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Sunday, April 05, 2009 Maggie, Community Member, asks

Q: tissue expander pain 2 1/2 weeks post bilateral mastectomy, swap with implants pre chemo possible?

I had a bilateral mastectomy 2 1/2 weeks ago and seem to be recovering very well. I have tissue expanders that my ps filled to what she says is a small b cup. While my recovery has been going very well and I have seen a physical therapist to alleviate my tight and painful left arm (where they took the lymph nodes) there has been a constant unchanging soreness and tightness under my arms and across my chest and along my sternum. My ps said that that is typical of the tissue expanders and nobody likes them. The thought of another 4 1/2 (possibly more) months of this fills me with dread as I had not imagined this degree of soreness and discomfort. I have been taking alleve and tylenol which does not help. Any advice ? I'm considering asking to have the tissue expanders exchanged for the implants asap before the chemo is due to start, as I understand that once the chemo starts they will not operate until at least 4 weeks after it's completed and that means the whole summer of being quite incapacitated. Is this operation possible at this stage or am I stuck in this situation for months. I don't want to delay the chemo as it does have top priority in my mind. Thanks for your help. Maggie

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Answers (29)
Koryn, Community Member
4/ 9/09 9:24am

Maggie-

My mastectomy was Oct. 28 last year.  Expansion was uncomfortable to say the least.  My P.S. prescribed Valium and later Flexeril for the (and what you most likely are feeling) muscle spasms.  The expander is UNDER the muscle, not right under the skin. I am now expanded to a full C cup but that took several weeks, couple of months to get to.  You P.S. may have gone too quickly in an attempt to finish expanding before chemo starts.  I still expanded for 6 weeks while in chemo.  It was not a problem.  The expanded breast is much larger than my real breast so that it will sag and droop like my real 45- year- old- fed- 4- babies- breast.  The spasms do settle down.  You will not heal at all during chemo so they probably don't want to exchange them out for implants right now.  A small cut on my finger is taking FOREVER to heal while I am on chemo - major surgery would delay your chemo by about 8 weeks.   The other plus sude of waiting it out is that it gives the skin a chance to stretch and settle into position, lighten up the stretch marks if any, and give a more natural appearance in the end.

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Angela, Community Member
4/ 6/09 3:11pm

Hi Maggie - - i am having this same surgery in another 10 days - - i'm freaking out.  I'm very nervous and have been doing so much reading about the expanders and all the implant stuff.  I wasn't sure that i would have chemo or not after the surgery - doc did not say as of yet.   Guess they will know during the surgery when they take out the lymph guard node - something like that.   the reason i'm writing is that you have and are going thru what i will be and i haven't been able to talk with anyone who has had to go thru this same exact surgery yet.  everyone else i see has reconstruction or something else but not the expanders per sae.   Can you give me any insight as to what to expect other than what you said in your message above?   I mean, i'm really impressed that 2 1/2 weeks and you are doing well - - i've been hearing 3-6 weeks recovery - - - i'm so glad to have found someone who can related to what i'm having to face.   If you can shed any light for me on what you've learned, what i may not already know, and what i can expect - - i would be greatly appreciated.   Confused and Scared - - need a rock to give me some strength and understanding.  

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Deidra Duncan-Goodings, Community Member
11/ 4/09 10:05pm

Hi Angela, I had my bilateral mysectomy on October 16, 2009.  I'm going to be really honest with you.  1st. HAVE A POSITIVE ATTITUE.  I found my lump on my honeymoon, after a follow up visit, my Physician found another tumor. The morning of the surgery I had my family and close friends with me the entire time, no crying, no fears, only hatred for Breast Cancer.  I took the courage of all the women who had gone before me in the OR and had the staff laughing, the last thing I remembered is the Anesthesiologist asking if I had anything to say before he put me to sleep, I told him that BC can kiss where the "sun don't shine", I really didn't say it quite that way, but you get the jest.  The surgeon told me I woke up laughing, first time he'd ever seen that :^)  2nd. YOU WILL HAVE PAIN, NOT DISCOMFORT, GOOD OLD FASHION PAIN. After surgery,  I was in PAIN, but the hospital kept me very comfortable.  I was released the second day (much to my dismay)  I felt I was being released too soon.  The expanders are UNCOMFORTABLE to say the least, hurts like hell,  especially the right side (lymph nodes removed). I have found sleeping propped up with a stuffed animal on either side as well as one  behind my head really really helps! No over the counter scripts help, you need pain medicine.  3rd.  Talk to your doctors, let them know how you're feeling... I told the PS I was extremely sore to start expanding, we will start next week. Please know that we all deal with pain differently, I have a low threshold for pain, so don't let our stories scare you, confront this dreaded disease which have taken too many of our sisters, mothers, aunts, away from us.  You will do just fine, remember I, along with Maggie and all others on this forum will be with you!  Kick Cancer's Arse!!!!!!!

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Smitch, Community Member
3/ 3/12 8:18am

I apprecate you fighting spirit to me its the only way to go at this thing. I had my double mastectomy with expanders in 2007. I have been looking for someone who may be able to answer a question for me. I want to exercise and was told I would be able to do any exercise I want. I have found that not true at all. My implants feel like they are under my arms to start and when I exercise it is worse. I am afraid and I don't like that feeling for I like to win. Have you figured this out?

Any help would be aprreciated.

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jensielee, Community Member
3/ 9/10 7:56pm

Hi, my name is Janet and just had the bilateral followed with expanders. I do have some soreness and tightness, but am doing very well so far. I massage the chest above the incision lines where the expanders are and below the incision line, this for me seems to help. I truly believe that all will settle in time, this is something that you body is not used to and needs to adjust. I also do little arm

lifts so that I don't lose much strength in my arms and is working so far. My best

advice is to have the best mental attitude and physical attitude possible, it helped me. My surgery was on thurs the 4th of march and I was released fri march 5th 2010. You will do fine with your surgery just as I did with mine.

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Reynolds Shook, Community Member
6/ 7/10 11:13am

Hey Maggie,

I have just been out of surgery with expanders 2 weeks.

This is the most interesting thing I have ever done.Since I am an artist and designer ,I am blown away with the plastic surgery.Advances are facinating.

 

I want you to look at this as an adventure not a dreaded one either.You will have discomfort at home after surgery,but just breath deep and move around a lot.It really helps and I have to say , I have had worse pain from headaches and lower back pain.

 

Do have pillows to prop your arms and prepare to rearrange yourself a lot.Have someone with you all day and night for 2 days after surgery and in hospital.

 

I promise you will be just fine ,and oh stay on a clear liquid diet for about 4 days for sure .

 

Keep smiling and do not be scared .I realise now how silly I was before surgery.

 

I am doing great.You will even wake up with clevage!!!!!I sur am smiling now and my friends are blown away with my quick recovery

 

rs

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candy, Community Member
7/ 5/10 8:11pm

Hi. My name is Candy and I just had tissue expanders placed in for the 2nd time. The first time I had both breast removed and a lat flap procedure on the left side (where cancer was found) and my white cell count kept going up so after 3 weeks in the hospital we decided that we needed to remove them. So we did, fortunately this got back to normal after about 2 months. So here I have waited 6 months ti try it again. I was out of the hospital the next day, everthing going ok until today I checked my temp and it is a little high. I am scared, I don't want to have to put my family through this aggrevation again. My right side feels fine because ther were no nodes or anything extra removed, but my right side has gotten really tight and sore and it bothers my thoughts thinking something is wrong. Did you have this problem? My surgery was preformed on June 24th.

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dawn, Community Member
5/12/11 8:12pm

What a wonderful, kind and inspirational person you are! I was just diagnosed and need to have a bilateral mastectomy and was totally dreading the whole experience especially the expanders. I also am a 25 year cancer survivor and only 45 years old but remain quite active and enjoy all sports. Thanks for helping people like myself get though this difficult time.

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PJ Hamel, Health Guide
5/12/11 10:08pm

Dawn, this is a tough time, when you're facing surgery, waiting to get things started... I hope your surgery and expander process go well, and that you're soon heading back towards good health. I have no doubt you'll be participating in your favorite sports sooner than you think, too! Best of luck - PJH

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dawn, Community Member
5/12/11 10:59pm

Thanks so much! I'll most likely be on this site again.

Dawn

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Phyllis Johnson, Health Guide
5/13/11 5:25am

Let us know how it goes.  We'll be here to answer your questions or to listen if you just need to vent.  I wish you a successful surgery.

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Stacey Neumann, Community Member
11/30/10 6:27pm

Hi Maggie, i had my first mastectomy in march, right side was the breast cancer. I then went through 12 weeks of 3 chemo drugs, now i am on one until june. In september i underwent a left mastectomy for preventative reasons, then they put in bil. expanders. Since then i have been getting expanded every week to this day. I have one more week left, then have to wait 3 monthes before i can have my implants in.

 

This is a long ordeal, I totally understand your frustration and fear. It is normal to feel what you are feeling. I have pain with the filling for about 2 days, but still have a hard time getting comfortable at night to sleep. I was recently put back on a mild muscle relaxer called robaxin. It has really helped me at night, causes a little drowsiness so I dont take it at night. I sometimes put ice on the spot that is causing the most discomfort, I was also told by my dr. that i can alternate heat also. It is a frustrating process and i cannot wait to be done with it, but i keep telling myself it will be all worth it in the end. I also went to physical therapy to help with some strengthening in my arms. I wish you all the best, hang in there, dont be afraid to talk to your doctor or nurse about your concerns, you do  not have to live in pain. You will be in my prayers as you go through this journey.

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hollie18, Community Member
3/22/11 1:45am

Hey! I'm 33 and looking at a prophylactic bilateral mastectomy in two weeks. I have been blogging about this, Long Live the Ladies.

 

I've also been following a purely prophylactic procedure that's been very informative and the woman undergoing it is chronicling the entire thing from the standpoint of being BRCA positive. Check hers out. I love it! Prophylactic Bilateral Mastectomy.

 

I hope these help and I hope things go really well for you in your surgery and recovery. You will be in my prayers.

 

Hollie

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Mj, Community Member
11/20/11 5:52am
Hi Maggie I have one expander in and it's fine I had it put in on the 20/10 and never had much pain with it at all it was more the arm and that was due to lymph node taken out they haven't pumped me up as I had more nodes removed and the only strangeness is that it feels something is moving but I have been told this is normal I think it's because I haven't been pumped up and the skin has stretched hope all is going well and remember it does get better but it is still good to cry and let it out bye for now mj Reply
PJ Hamel, Health Guide
11/20/11 6:24am

Thanks for adding your feedback here, MJ- it's SO helpful for all of us women to hear what one another are going through. Hope your process continues as smooth as can be. Smile PJH

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Ana M.. Quintero, Community Member
12/ 2/11 8:48am

Hi Angela I felt like I had to answer you.  I am bilateral mastectomies on 9/9/11 and they inserted the tissue expanders at the same time.  I don't need chemo or radiation because they found my cancer soon.  I had the expanders in until 11/16 and then one burst.  I had bilateral expander exchange on 11/18 to my dismay I burst my left one again on 11/30.  What a mess I leaked outside because I still had my fresh incision.  The expanders are very uncomfortable and needless to say you can't move around too much because they burst.  I sleep in a recliner so that I don't press on them.  If I had thought this out...I would have never done the expanders and simply worn a prosthetic bra. 

Don't be scared, trust in God because he has the plan for each individual.  We are chosen ones because we can tolerate.  I wish I could hug you because it seems like you are in need.  Good luck to you God Bless.

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Phyllis Johnson, Health Guide
12/ 2/11 7:18pm

Ana, I'm sorry you have had such a hard time.  What is your doctor saying about possible next steps?  You might want a second opinion from another plastic surgeon about what is causing implants to fail twice.  I would think that is very unusual.

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Ana M.. Quintero, Community Member
12/ 2/11 8:33pm

Thanks for answering me.  I think I will go see another plastic surgeon since I do work at a hospital.  The second time it ruptured I might have done it myself when I bent down to put on my boots.  I am going to be really careful this time around, but I will seek another opinion.  Thanks

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PJ Hamel, Health Guide
12/ 2/11 8:17pm

Ana, it sounds like it's the expanders you're having trouble with; most women don't have nearly the amount of challenges you've had with this proce, so you have my sympathy! I agree with Phyllis - you might want a second opinion from another surgeon. Once the implants are in place, they should be much more comfortable than the expanders. And hopefully once you get to that point, you'll be glad you undertook this process. Best of luck to you - PJH

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Ana M.. Quintero, Community Member
12/ 2/11 8:38pm

Thank you PJ I guess I will be heading to another PS.  I do work at a big hospital and we do have plenty of docs.  Thanks for the advice.

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Ana M.. Quintero, Community Member
12/ 2/11 8:38pm

Thank you PJ I guess I will be heading to another PS.  I do work at a big hospital and we do have plenty of docs.  Thanks for the advice.

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PJ Hamel, Health Guide
12/ 2/11 9:17pm

Ana, I'm glad you have access to a bunch of docs - good to have a choice. I wish you ALL THE BEST as you get through this and get on with your life! PJH

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Nancy, Community Member
12/30/12 10:40pm

Hi ladies

need some encouragment to handle expander.  It is on my left side and pain is not tolerable... any kind words will help !!!

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NAOMI, Community Member
12/12/11 3:04pm

I HAD A BILATERAL MAST 11/10/11 WITH EXPANDERS...THE EXPANDERS FEEL LIKE A HOT HEAVY ENGINE WHERE MY BREAST WERE...I KEEP TELLING MY SURGEON AND NOW THE PAIN MED ISN'T WORKING...I FEEL THE EDGES OF THE EXPANDER DIGGING INTO ME I CAN'T FIND ANY POSITIONAL, MEDICAL OR WRAPPING THEM RELEIF...I REALLY WANT THEM OUT ASAP BUT I'VE STARTED CHEMO SO NOW I HAVE TO LOOK FORWARD TO 5 MORE MONTHS OF PAIN.  BE READY FOR THE PAIN

 

NAOMI

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Phyllis Johnson, Health Guide
12/12/11 7:50pm

Naomi, I've heard a lot of women talk about how uncomfortable expanders are, and like you some experience pain, not discomfort.  Once the expanders are exchanged for the actual implants, most women feel much better.  You are right that your doctors aren't likely to want to do any kind of surgical procedure while you are on chemo because the chances of infection increase while you are on chemo. 

I'd recommend that you talk to your primary care doctor about your pain level.  Your primary care doctor knows your whole medical history and may have some ideas about the best pain relievers for you.  He or she may also be able to talk to your surgeon about what can be done since it sounds like your surgeon isn't listening to you as well as you would like.  I hope you are happy with the results once the whole procedure is done.  In the meantime, hang in there.  You will get through this.

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Michele244, Community Member
3/21/12 10:06pm

Michelle - 49yr old , I had a bilateral mastectomy 2/21/12. Im in my 4th week, and I cant begin to describe the pain I face every single day with the expanders. Its the pressure under my muscle and the sharp pains under my arms. My PS has prescribed to the point she has sent me to a pain mgmt clinic to help me.

Robaxin during the day with Ibuprofen / Dilaudid and Valium at night.  Im terrified of my first fill and I have days when I just want them out...The meds have not fixed the issue... Ive had a few Seromas and I wonder if this could be causing me so much pressure and pain? Tomorrow Im going to BEG my PS to do one fill then give me my permanent implants. If youve found something to relieve the constant heavy pressure.. PLEASE share with me!! :)

 

Have never experienced so much depression in being in so much pain...

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PJ Hamel, Health Guide
3/22/12 5:49am

Michele, you need to watch out for that depression, as well as treating the pain. Please speak to your doctor about this - tell him/her this is all affecting your life in a very negative way, and you need help dealing with it. Not just physically, but mentally and emotionally. Hopefully they;'ll hear you and respond. I hope you get some relief soon - PJH

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Michele244, Community Member
3/24/12 5:59pm

I so Agree! And I am now on Cymbalta to help relieve some of the pain and depression.

 

No one prepares you for the worst. More disappointed in the Dr.s almost dismal feeling to my constant pain. Pain Mgmt is where you go and a group that manages pain helps to take care of the pain for nerves and muscles - right?  Not sure all of these meds are working other then wiping me out...Im not seeing great relief from the Robaxin.. even upped to the 750 4 times...

 

Anyone else tried this? Has anyone used Flexeril instead?

 

Im dealing and Im trying soo darn hard to beat this pain.. its unbearbale to say the least and I just had my surgeon remove 180cc's of fluid from both breasts..

OMG That gave me relief!

 

Monday we start over... Fill - needle aspiration for the fluid ( Its already started to fill back up ) Im terrified of Mondays fill day... If they removed 18occ's of additional fluid build up..how will I ever be able to take in 50ccs? Is there a difference? -- Im scared not going to lie to you!

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PJ Hamel, Health Guide
3/24/12 8:35pm

Michelle, understand that the Cymbalta takes several weeks to kick in, so hang in there... Have you tried Reiki, or other alternative treatments? You need something to relieve you of not just the pain, but the stress, which makes it even harder for your body to cope with pain. Have you tried a pain management clinic? I hope you find some relief somehow... PJH

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Michele244, Community Member
3/25/12 2:55pm

Yes going to a Pain management clinic. Calling them tomorrow to reschedule an evaluation of all of the meds Im on..Im not very impressed with the pain mgmt clinics and their sense of urgency in helping. Went once never even saw a Dr. Just a Nurse Pract.

 

I think Robaxin is actually putting MORE pressure on my chest versus relaxing, and the Dilaudid and valium are the only things releaving pain. I cant work on those kinds of drugs and dont want to be on them!..

 

Tomorrow is my first supposed fill and most likely 2nd needle aspiration as the fluid has come back.. so I may be making a personal choice to remove the expanders, and get my quality of life back.I have novacaton time left and I fear I wont be able to perform my job in 2 weeks, even at half a day standing...

 

Has anyone ever taken them out due to the pain?

 

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PJ Hamel, Health Guide
3/25/12 3:53pm

Sure, Michele, you wouldn't be the first to decide the pain just isn't worth it. Especially if you feel it's going to impact your work - we all know how critical it is to have and keep a job these days. You might consider ending the process for now, and trying it again in a year or two. Or you might try autologous (body tissue) reconstruction, if you're eligible for it. It's a lot less painful, if my reconstruction is any indicator; it's also a lot quicker. I had very little pain, and was back at work, completely healed and with a beautiful new breast, within 3 weeks after mastectomy/reconstruction (had them both done at once). So, something to consider - good luck tomorrow. Sending you positive energy - PJH

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Michele244, Community Member
3/25/12 6:59pm

I am SO thinking about it. I was told with the stomach flap or tram it was like 8 weeks recovery!

 

If I end hte process - have them removed.. will most insurance companies let you re-do this type of surgery in same calendar year or even next year with a pre-existing condition? I cant imagine them being happy me ending a precedure that was so expensive.. I dunno?

 

 

Has anyone had good or bad affects in taking Lyrica for nerve pain??

 

Thanks!

 

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PJ Hamel, Health Guide
3/25/12 7:48pm

Michele, it's a Federal law that if your insurance company pays for your mastectomy, they have to pick up the tab for reconstruction. That said, not sure if that means one reconstruction, or as many as it takes until you're happy. This is definitely something you need to check with your particular insurance company... PJH

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michele244, Community Member
3/25/12 10:23pm
Just hearing your comments daily, help. Thank you kindly! Decisions decisions. I'm doing everything possible tomorrow is my 5th week of expander he'll and I'm hoping to get relief tomorrow! Thank you for this outlet..waiting to be the one that can make someone else smile! I miss ME. Reply
Michele244, Community Member
4/ 6/12 8:51pm

So glad I had friends and family to talk sense into me. After reviewing the a pain meds, I was changed from Robaxin to Soma 350 2 times a day and a Transdermal patch Duragesic. - THESE SAVED MY LIFE! Not to mention that I on a weekly basis check in with my surgeon for an ultrasound and needle aspiration if necessary for seromas has reduced my pain and suffering by 60%! - not kidding... Ive had 2 fills..the first one 50% without the new meds and almost DIED from the pain.. and then after the new meds too 100cc's this past Med with only soreness..Also going to Physical therapy,this works TOO!

 

Im not giving up,and neither should anyone else. Pain can suck the life right out of you. Investigate, ask questions, ask WHAT else can we do... thats how I found the seromas, and challenged my pain mgmt clinic to re-evaluate my meds... Its working... SO FAR! -- I'll update you in a week, another 100cc's. Im at 450 now.... how big is a med C? Does anyone know?????

 

Missed ya'll this week and needed to post something positive. !

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Michele244, Community Member
4/ 6/12 8:51pm

So glad I had friends and family to talk sense into me. After reviewing the a pain meds, I was changed from Robaxin to Soma 350 2 times a day and a Transdermal patch Duragesic. - THESE SAVED MY LIFE! Not to mention that I on a weekly basis check in with my surgeon for an ultrasound and needle aspiration if necessary for seromas has reduced my pain and suffering by 60%! - not kidding... Ive had 2 fills..the first one 50% without the new meds and almost DIED from the pain.. and then after the new meds too 100cc's this past Med with only soreness..Also going to Physical therapy,this works TOO!

 

Im not giving up,and neither should anyone else. Pain can suck the life right out of you. Investigate, ask questions, ask WHAT else can we do... thats how I found the seromas, and challenged my pain mgmt clinic to re-evaluate my meds... Its working... SO FAR! -- I'll update you in a week, another 100cc's. Im at 450 now.... how big is a med C? Does anyone know?????

 

Missed ya'll this week and needed to post something positive. !

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PJ Hamel, Health Guide
4/ 6/12 10:00pm

Michele, that's super news! I'm SO glad you advocated for yourself and have gotten some pain relief. Hopefully you continue down this good path.

 

I think your surgeon would be the one to tell you wnat a medium C cup would be as far as cc's go; apparently it's somewhat dependent on your body type. From my research, it looks like a 36C would be about 400cc... but do check with your doctor, OK? Take care - PJH

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Phyllis Johnson, Health Guide
4/ 7/12 10:16am
Michelle, I am so glad you found a way to manage your pain. I hope other people going through the transplant process will read your story. Most people feel fine after the real implants go in (allowing some time to recover after the surgery). Thank you for the update and continue to let us know how you are doing. It sounds like you should be fine soon. Reply
Howdy, Community Member
4/ 7/12 4:23am
I agree I had my expanders put in on Thursday and can not believe the pain I amY in. I have been put on 3 different medications and only one helped. I am suppose to be discharged today and am winding what to do about the pain since nobody will ask for a pain med that will help me. It is so hard to explain the typr of paid you are in. Care can't sit stand or layhh Reply
PJ Hamel, Health Guide
4/ 7/12 5:32am

I'm so sorry you're going through this pain... If you haven't read through this thread, please do; hopefully you'll find some info. that will help you advocate for yourself in trying to get the pain resolved. There may be something new to try - but you do have to stand up for yourself, and sometimes quite forcefully. Best of luck - PJH

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Michele244, Community Member
4/ 7/12 11:37pm

Howdy, and many others --

 

Just a few weeks ago I was on here begging for someone to tell me how to fix the pain.. how to keep me sane... how to fight my depression... I thank this forum for the information, support and insight.

 

Communicate - over communicate. Ask alot of questions. Many you wont know to ask unless you've heard or read somewhere someone elses experience. This helped me. I researched I spoke to other Drs.

I was a pain in the ass to many people.. But it worked!

 

4 weeks of pain, I felt my life dying.. litereally depressed daily of pain, not excited and thinking seriously of taking out the expanders. I thought to myself, my quality of life means more.. Cancer free.. thats the objective.. pain -- not in my plan...I am a POSITIVE person, feeling that way was a wake up call to me and my family. I was losing ME. I needed change and quickly!

 

Things I did immediately:

- Got physical Therapy at Turning Point in Alpharetta (They are fabulous)

- Had Pain Mgmt re-evaluate the meds they gave me.. New ones are working!

- Explained my SERIOUS concern with my PS about the pain, and her ownership in helping me.Told her I was ready to have them removed, and wanted to know ALL options to check before doing so.

- Since the pain meds didnt help my pain at ALL -- My PS stated that I had fluid and ordered an ultrasound since something didnt seem right on all of these meds and at the 5 week mark.- She was right.

 

- What they found were Seromas.. bodies of fluid stored in the cavities of your empty non filled breasts... My original Breast surgeon actually did the ultrasound and needle aspirated 120cc's from my left and 70cc's of fluid from my right. -- PAIN gone. Can you beleive 180cc's of extra fluid?? Let alone in an implant? -- So weekly I go to a Post-op appt to have the ultrasound check my expanders and look for fluid. Im aggressively fighting this. Insurance DOES pay for these visits.- I also bought a tight sports bra and an ace bandage to wrap around my chest just to compress and keep the fluid from coming back. Ask your PS if thats ok...

 

Its painful.. I wish I knew 5 weeks ago what I know now.. When I read so many of these posts, I cried for every woman on here. I still cry for you, and I pray you research, ask questons, and challenge the process when needed to help YOU manage the pain. If the pain meds dont work -- tell someone - change them. 

 

 

Im on Soma 350 2 times a day and a Transdermal patch that lasts 3 days. I take 1 Valium at night to sleep, and thats it. I used to take Dilaudid 4 times a day with valium and stay in a coma WITH pain. -- NO MORE!!

This is what works for me... doesnt mean it will work for you. ALWAYS speak to your Dr. I ended up at Pain mgmt clinic because my Surgeons couldnt diagnose pain management.

 

Long story short.. seriously...  Take the pain, anxiety into your own hands. What I mean by this is, for weeks I cried, and just accepted this was what would be until the time it ended, and lived with it miserably. - Then a very good friend looked me in the eyes and said "This isnt you, I want the old Michelle back" we'll fix this together.....  And started the journey of a different path...

 

I'll update as I can... Im thankful for this forum, and I pray for every single woman on here. DO NOT give up. Feel free to email me Michele244@aol.com if you like...

 

Godspeed - Have a great Easter!

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PJ Hamel, Health Guide
4/ 8/12 6:14am

Michele, what a wonderful post to read first thing Easter monring - it's like you've come back to life. Pain is eviscerating; it can destroy you. Thanks for this valuable advice about NOT living with it, NOT accepting it as "natural" - there are usually things you can do about pain, but sometimes it takes a lot of effort - as you found - to figure out what's causing the pain, and to fix it. I hope you stay on this same positive course as you continuee to heal. Blessings - PJH

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Michele244, Community Member
5/12/12 1:59pm

June 20th.. is MY day.  Transplant takes place and the hated expanders will go away. I've thought about framing one of them to remind me of when I think something is bad -- just look at this bad boy and remind myself things could be worse.- Like these! OR like having cancer.

 

I talk to sooo many people -- and they say, I really dont remember... when you tlk about pain, and expanders and experience.. Truthfully I personally will never forget this whole experience, and I dont think we should.  Afterall, If you are here to talk about it, your thankful Im  sure.

 

By the way Ladies -- at week 10, I got a second opinion and went with ANOTHER Plastic Surgeon. If you are not happy, IT IS your body. Dr.s will hate me for saying this.. but it was the difference of one Dr saying "I'll do the best I can, Im not a miracle worker" to another Dr. saying "Im going to make you pretty"......

 

Im glad I found this forum, and Im living with the expanders in month 3 its tolerable, but I am still on pain meds.. its hurts.. I know but it does get a bit better... I'll be backon after June 20th to let you know I survived the new breast sunami! -- Cant wait!!!!

 

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PJ Hamel, Health Guide
5/12/12 4:35pm

Oh, Michele... what a welcome relief that will be, to get the expanders out! I trust your surgery will go smoothly, and your recovery will be uneventful. AND that you'll love the result! Thanks for reminding us all that it's up to use to decide what we want done, and who we want doing it; sometimes we just have to get out there and fight for ourselves to get the results we want. Best of luck to you - PJH

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Trina Powell, Community Member
7/ 4/13 10:40am

I had a double 7/12 with expanders-no drains. Uncomfortable YES! but had bouts of seroma constantly with eventual eruptions on both sides. Expanders were intact but the seroma caused the incisions to open and then just plain not heal. The expanders were eventuall pushed to the surface and could be seen thru the pend incisions. I had bot expanders removed and went staight to the implants in Sept. again seroma, eruptions and the implants were pushed thru the incisions. I had them removed in Dec. and am now without anything. The incisions finally healed completely closed in Feb. Now I am having intermitten bruising in the chest area, sometimes light sometimes severe. I have yet to hear of anyone with similar symptoms

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PJ Hamel, Health Guide
7/ 4/13 9:21pm

Trina, sounds like you had a terrible experience; I'm so sorry. Your body must be particularly susceptible to bruising and swelling; the seromas sound like a severe reaction. Have you considered getting a second opinion from a different surgeon, about whether or not to give implants another try? Worth thinking about. Best of luck going forward - PJH

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Trina Powell, Community Member
7/ 5/13 10:35am

My PS wants to try a TRAM with maybe alloderm. I did not have tissue conserving surgery.I did start reconstruction with expansion which failed miserably as you know and now have some excess tissue but there is a large amount of scarring so the tissue in some areas would be too thin to be viable I would think and have to be removed. I do think I would like to try again but do not have a great deal of confidence in my present PS. PSs are few and far between in my area and fear going far from home in case I would need immediate help. I think my GP may be able to help me locate another PS just haven't gotten brave enough to approach the idea of going thru all this again just yet. Did you have a FREE Flap Tram? How quickly was your recovery time and healing?

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PJ Hamel, Health Guide
7/ 5/13 2:19pm

I didn't have a free TRAM - it remained attached. And anyway, the DIEP flap is the newest/best surgery; I had my TRAM 12 years ago, so a lot has improved since then, and most good surgeons would rather perform the DIEP. It's tough when you don't have reliably good health care nearby, I know. And I understand your fear of traveling too far, then having to go back for the after care. Check out this list of Comprehensive Cancer Centers, which are government-designated "best cancer hospitals in the country" - if there's one near you at all, that would be the place to seek a second opinion. Good luck - and check back in here when you decide what to do, OK? We're here for you. PJH

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Peg, Community Member
12/27/11 2:32pm

Naomi,

I am so sorry you are going through all of that.  I too had a bilateral mast on 11/8/11 with the expanders (I am 45).  I had 3 expansions done after surgery and on the last one my PS gave me 120 cc.  It was the most uncomfortable (I am being nice) feeling EVER!  I  have been on valium and Norco since.  I am worrying about being on these drugs this long but I have such pain that the over the counter drugs don't seem to be helping.   I had 3 lymph nodes removed on my right arm the back side of the arm has lost some of feeling down to my elbow.  I wonder if anyone else has had this, and has anyone else been on this strong of paid medications for this long?  Alot of the articles I have read are stating 2 weeks and you are back to a "normal" life.  As of now I still have some one driving me everywhere because of the medications I am taking.  I also feel like I can't go a day without taking a nap.  I am coming to the conclusion that I must have a zero tolerance for pain.  On an upper note I am cancer free and absolutely love my PS and his office.  I do have a WONDERFUL support system, and know I will come out of this stronger than I ever was before. 

 

Peg

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Chantal, Community Member
1/30/12 2:01am
Peg, how are you doing a month later? I hope better. I had a bi mast on january 5, currently in expansion hell, and am miserable. My chest feels like tight hot scratchy sandpapered cement walls sitting where my boobs used to be. I am raw with emotion and sick of feeling so sore and cranky. I have a husband who is sick with stress and also 2 young children. I need to feel normal! I miss my boring life! Chantal Reply
PJ Hamel, Health Guide
1/30/12 4:50am

Oh, Chantal, I'm so sorry you're having to suffer through this... Luckily, there IS an end to the process, and you WILL feel normal again. Sending you healing energy, and I hope that you start to feel better soon. PJH

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Chantal, Community Member
1/30/12 12:31pm
Thanks pjh for your reassurance. I'm feeling down. I am not sure of your story, but can I assume you are post expansion? Or just super strong and a great cheerleader!? If you are post surgery stuff, did you get relief w the implants? I need a light at end of tunnel!! Xo thanks! Reply
Chantal, Community Member
1/30/12 12:32pm
Thanks pjh for your reassurance. I'm feeling down. I am not sure of your story, but can I assume you are post expansion? Or just super strong and a great cheerleader!? If you are post surgery stuff, did you get relief w the implants? I need a light at end of tunnel!! Xo thanks! Reply
Chantal, Community Member
1/30/12 12:32pm
Thanks pjh for your reassurance. I'm feeling down. I am not sure of your story, but can I assume you are post expansion? Or just super strong and a great cheerleader!? If you are post surgery stuff, did you get relief w the implants? I need a light at end of tunnel!! Xo thanks! Reply
PJ Hamel, Health Guide
1/30/12 4:54pm

Chantal, I didn't have implants - I went with the body-part reconstruction, with a TRAM flap. So I don't have direct experience with this - but have connected with a lot of women who have, and they ALL report feeling much, much better once the implants are in and settled. So, yes, I'm a cheerleader, but I also have testimony from others in your situation that things WILL get better! Hang in there... PJH

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Mary C., Community Member
2/13/12 10:09pm

I had a masstectomy on 12/5 and then got a bad infection so more surgery on 1/23.  It has been a couple of weeks after your last post and I want to know if you are doing better?  I am still considering implants in 3 months but also want to know how long the pain is going to last if I go through with it.  This has been such a difficult time.

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Chantal, Community Member
2/14/12 1:40am
Hi Mary, sorry to hear you had a terrible infection. Is everything settled now? I had an infection a day after mastectomy but it was controlled via antibiotics at the hospital and a PICC line IV at home. Your situation sounds like it was much more involved. Hope you are ok. Good news is that I am feeling pretty good today! I wouldn't say fantastic, but I am finally feeling like I am going to make it! The weekly expansion process is a dreadful situation, but just like child birth (if you've had children), the pain is ridiculous but then 3 days later I can not recall that same pain exactly. I suppose it's your body and mind's way of protecting itself. I have an expansion on Wednesday at it will also serve as my pre-op appointment for my March 8th surgery. I can't wait for these horrid expanders out of me! It's been such a tease having my nipples right now knowing they will be gone. I am trying to imagine the emotions I will feel staring at my body with missing body parts ( both nipples). As of now, my breasts look like a "bad" boob job, because of the shape of the expander. I am being expanded extensively because I will be losing so much skin in this next surgery. I digress I suppose. Back to your question, i think some of the pain will depend on how your plastic surgeon may approach your personal situation. My ps took the fast track and expanded me quickly so the process did not last for 6 months or more. I had my bi mast on jan 5 and my implants will go in on mar 8. Yes, the pain can seem barbaric, but I am moving ahead and you will too. You will amaze yourself with your strength and you will also feel fragile and depressed at times, and then you will feel ok, all in the same day!! Hugs to you! Xo Reply
Michele244, Community Member
3/24/12 6:07pm

Chantal - GREAT to hear youre feeling better in such a short time.. its been almost 5 weeks for me with no relief... WHat did you do? What did you take?

Any physical stretching activity -- share share share!

 

Im looking for that light too my friend and right now the roads are pretty dark!

Send it my way!! :)

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Phyllis Johnson, Health Guide
3/25/12 8:41am

Michelle, it sounds like the main cause of your pain is the fluid build-up called a seroma.  This is very common after breast surgery (and other surgeries too), so although I'm sure the tissue expander is a part of the problem, it doesn't seem to be the main problem.  Keep on going back to the doctor to have the seroma drained, and ask about prevention techniques.  Your idea about stretching is a good one.  Maybe a physical therapist would have some ideas about ways to reduce the pain. 

I have dealt with a lot of pain over the years for various reasons.  I have two main ways of coping.  If it is a chronic problem like the arthritis in my knee, I learn to ignore it.  Pain is usually our body's signal that something is wrong.  Once I realize that the pain is there to stay, I think about other things and focus on something pleasant when the pain flares.  When the pain is for a purpose like childbirth or getting rid of cancer, I try to focus on that outcome instead of the pain.  Your current pain is a combination of the two kinds of pain I have described.  It has a purpose.  Your body no longer has cancer, and at the end of the reconstruction process you will have a new breast so that you are balanced and don't have to hassle with a prosthesis.  But the pain from the fluid build-up is your body's call to action to have doctor drain it or to take other measures to reduce the fluid.  Some people have more trouble with seromas than others, and you may be in the unlucky group that takes longer to heal from surgery.  But keep your eyes on the prize--good health and a balanced body.

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Michele244, Community Member
3/26/12 7:12pm

You must have ESP? LOL. Today round 2 of the needle aspiration to remove fluid build up after my PS gave me 50cc for my first fill.Yell Sore on right side miserably but releaved a little from aspiration left side. Im going back Thursday for another check on fluid with ultrasound. At this point its my original breast surgeon doing the removal they have the ultasounds at BCS.. The fill is hard..Im trying to ignore it.. Im also having to work at the same time, so meds sometimes interfere with my day.

Back to Pain Mgmt tomorrow -- Physical therapy Wed!! Thurs drained again...

 

Its got to get better right? I hear you sister I hear you!!!!

I just want ONE good day! -Kiss

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Phyllis Johnson, Health Guide
3/26/12 7:17pm

The good days are coming.  Hang in there and keep communicating with your doctors about your pain levels and changes you notice.  It will get better.

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Chantal, Community Member
2/14/12 1:47am
Hi Mary, sorry to hear you had a terrible infection. Is everything settled now? I had an infection a day after mastectomy but it was controlled via antibiotics at the hospital and a PICC line IV at home. Your situation sounds like it was much more involved. Hope you are ok. Good news is that I am feeling pretty good today! I wouldn't say fantastic, but I am finally feeling like I am going to make it! The weekly expansion process is a dreadful situation, but just like child birth (if you've had children), the pain is ridiculous but then 3 days later (after expansion) i can not recall that same pain exactly. I suppose it's your body and mind's way of protecting itself. I have an expansion on Wednesday at it will also serve as my pre-op appointment for my March 8th surgery. I can't wait for these horrid expanders out of me! It's been such a tease having my nipples right now knowing they will be gone. I am trying to imagine the emotions I will feel staring at my body with missing body parts ( both nipples). As of now, my breasts look like a "bad" boob job, because of the shape of the expanders. I am being expanded extensively because I will be losing so much skin in this next surgery. I digress I suppose. Back to your question, i think some of the pain will depend on how your plastic surgeon may approach your personal situation. My ps took the fast track and expanded me quickly so the process did not last for 6 months or more. I had my bi mast on jan 5 and my implants will go in on mar 8. Yes, the pain can seem barbaric, but I am moving ahead and you will too. You will amaze yourself with your strength and you will also feel fragile and depressed at times, and then you will feel ok, all in the same day!! Hugs to you! Xo Reply
Phyllis Johnson, Health Guide
2/14/12 5:28am

Chantal, it's wonderful to hear that you are feeling better and also coming to terms emotionally with the pain involved with the expansion process.  Although I haven't had implants myself, I hear from many women that they can't believe how much better they feel when the real implants replace the expander.  I hope the next steps of the process go well for you.

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Mary C., Community Member
2/14/12 5:09pm

Thanks for your reply.  When I had the mastectomy I had a lot of bleeding afterwards and a hematoma  (blood clot) formed.  That was a perfect breeding ground for infection.  I blame my first surgeon that he did not send me home with antibiotics and did not seem concerned at all.  He said it would go away but after 8 weeks it still hadn't.  When I went and saw the oncologist she was shocked that he did not do any repair and got the p.s. to get me into surgery right away, where he found a serious infection.  I have to be on antibiotics for a month.  Not happy with first doctor at all.  I guess the bottom line is that I am just mad that my world has been turned upside down and my only way to survive cancer is to have to suffer and go through surgeries.  I want the expanders but I don't want the pain, drain tube and more surgeries.  This has all been so overwhelming and I have not come to a place of acceptance yet.  Thanks for reminding me that I have the strenth to do this.  Thanks for also being honest about how it feels.  I do know what you mean about chilbirth, I have 3 daughters.

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Cathy, Community Member
4/16/09 12:49pm

Hi Maggie - I know exactly how you feel!  The tissue expanders are very painful.  No one really told me this.  The doctors used words like "uncomfortable", etc.. I have had mine in since Jan. 15th and have my exchange surgery next week (4/23) and I can tell you I have been in a lot of pain the whole time.  I have had to take vicodin and motrin the entire time.  After the second filling I was screaming in pain and thought of jumping out the window (wouldnt really do that), but I will not forgot how painful that weekend was.  It did lighten up a little but then I would have another fill.  I asked the PS to please remove them that I could not take the pain anymore, but she said they have never done that before.  I wanted to go to the ER one day because they hurt so bad, even on the drugs... I dont think enough true information is given to BC patients.  We have to make so many decisions, so fast.  Prosthesis would have been simpler, easier and less painful, but I was thinking of how I would look in clothes.  I dont have much encouragement and I am sorry but I think the truth will make things easier for you to deal with.  I was only made to wait for 8 wks after my last fill.  That is pretty fast.  I refused the last couple of fill because of the pain - opting for a smaller size of implant later.  See this article also: http://www.fda.gov/cdrh/breastimplants/labeling/mentor_patient_labeling_5900.html#5

Best of luck to you and God Bless you. Cathy

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Gloria, Community Member
3/ 4/12 1:49am

HiCathy, On feb.8th I had a masectomy and the tissue expander put in right after. and im like you no one told me anything about  the pain that i would be having  i havent had any fillings yet  but im scared as hell.  because im in pain right now i cant imagine the pain i will be in with the fillings. I will be starting radiation in 2weeks  and thats going to take about 6weeks i dont think i will be able to handle the pain that long  And you are so right we do have to make so many decisions,so fast...May god help each and everyone of us  going through this horrible and painful time!!!

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PJ Hamel, Health Guide
3/ 4/12 6:38am

Gloria, you're right; I think the pain of reconstruction involving implants and expanders is underestimated and under-reported by most doctors and surgeons. All I can say is, hang in there - each day that passes, you're that much closer to being through the process. I hope you've reported the severity of your pain to your surgeon (and his/her nurses); there might be some measures you can take to reduce it somewhat. And, with the expanders, at least, prior to the fills, it may tend to lessen with time, as your tissue actually expands and gets used to its new shape. I hope that's the case for you - best of luck. PJH

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veronica, Community Member
3/15/12 11:06am

I too had expanders placed recently, 2/28 and can not believe no one told me about the PAIN..worse pain O have ever experienced. It should be illegal for them to nnot inform us of this! I never would have done this to myself. Veronica

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PJ Hamel, Health Guide
3/15/12 3:04pm

Veronica, I'm so sorry you're going through so much pain; it sounds like you're experiencing more than most. Have you tried accessing a pain management clinic? How about acupuncture? When pain meds don't work, it's good to try alternative solutions... Best of luck, and I hope your pain subsides soon. PJH

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sheppey, Community Member
5/24/09 6:38am

I had bilateral mastectomy 2 weeks ago and had the expanders implanted.. my left breast is swollen to a good c cup an is very tight with a feeling of fullness, they tell me there is a slight infection there.  however my pain which had me screaming tonight is in my right breast i can feel the port of the expander and i think it may be touching a nerve.  I cannot move my right arm at all.  I did some sweeping today and I am not sure if tht was too much.  I read that having the top ups of saline are also painful i really dont know if I can take all that.  i am only 2 years out of brain cancer and now this.  sorry for whining but i have honestly never felt the pain that i felt today.. any ideas on pain relief i have taken 2 endone which i like vicodyn i beleive and so far it is still there.  not as bad or i wuoldnt be typing but definately there.. any advice would be appreciated.

thanks

jayne

 

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Percy, Community Member
8/29/09 10:51pm

Hi I am getting ready for bilateral and the expanders.  I like to be informed because it helps me feel like I have a sense of control.  The mind is an amazing thing when overcoming fear and pain.  I like the honesty of it all I think it helps you to cope better.  I thank you for relating your experience.  It has helped me prepare my mind.  I pray you have continuous success, peace of mind and a calm heart on your journey and that I can be a source of comfort to others. thanks so much

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sheppey, Community Member
8/30/09 12:00am

Well I am now right down the track of my surgery and next week I go to have my expanders removed and my implants put it.  The expanders have been a pain as they are just so imoveable and it is like having 2 lumps of granite on my chest, although I do see they are a necessary evil and I have got through the 3 months  so bring on the next stage. 

good luck to all

jayne

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joan, Community Member
9/ 5/10 8:59am

Well? does it get better? this expansion process is hell and I have not felt comfortable for a day, is there light at the end of the tunnel?

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Molly, Community Member
4/19/11 7:58pm
Hi. I am 13days post op prophylactic mastec with expander reconstruction. My left breast is doing very well and for the most part, the right is ok except for the lower outer area. The pain I am experiencing is best described at sharp, severe stinging or burning and it can hurt with any type of movement and actually bring me to the ground in pain. I went to my surgeon yesterday and he believes i am having muscle spasms. I am on soma, muscle relaxant, but am also taking advil around the clock. The percocet, pain med, does not begin to relieve this pain. I have alternated heat and ice....anything I can do I try. It is very depressing. I am very active and i have not been able to function for the past 4 days. I know this may not help you much now except to know that I am out here and experiencing the same. I return to the surgeon tomorrow and if I learn anything I will certainly post it. It is just so frustrating, especially since I can pinpoint the exact spot of my problem. Thank you for your post. You are the first I have found that sounds similar..it truly helps if only emotionally. Molly Reply
PJ Hamel, Health Guide
4/19/11 9:09pm

Molly, you WILL feel better. Time heals, it truly does; I konw that's not much comfort to you now, but every day that passes, you're that much closer to being pain-free. I hope the surgeon is able to offer you something that gives you some relief. Take care- PJH

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Lea, Community Member
4/25/11 6:05pm

Hi Molly. I had a bilateral mastectomy 9 wks ago w/expanders placed at the same time. The mastectomy went fine, no complications, not much pain. We have expanded every wk since my 2nd wk out of surgery. At first it was ok but each fill my symptoms got worse-muscle spasms, nerve impingement, and spine/ribcage pain from the distortion of my muscles. I sleep 4-5 hrs a night. NO ONE told me expansion would be painful, let alone excruciating. (yes, "discomfort" seems to be the word of choice), and my PS still looks at me like he wants to roll his eyes when I tell him how much pain I am in.  I too am used to being active, and I haven't been able to work since early Feb. due to the pain and having a strenuous occupation. I can't even vacuum! I take robaxin for spasms, neurontin for the squashed nerve, advil when it's enough, and vicodin when it's not. Still, I am in pain 24-7. I am glad to know I am not alone, as I was starting to feel bad about myself due to how the PS is reacting. I wish someone would have told me the truth up front- I was only a "big" A-cup before my surgery, staying flat would not have made that much difference. My and my husband's friends all decribe me as strong or tough, and yet I had really started to doubt myself because I feel so much pain. Not everyone will have this much pain, I'm sure, but girls, PLEASE be warned it's NOT as breezy a process as the docs want you to believe. Think long and hard about how you respond to pain and whether plastic surgery is more important than your actual quality of life. I wish I had known in January what I know now. Lea.

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PJ Hamel, Health Guide
4/25/11 9:39pm

Lea, I'm so sorry you're having to go through this. I think doctors do tend to downplay the pain; or at least its possibility. I'm always surprised that so few doctors recommend a body tissue reconstruction, also; it's a longer surgery, but once it's over you can start to recover, without the 4-5 months of fills, further surgeries, etc. And to me, it seems a lot less painful (or at least mine was). But anyway, you're partway down this path now; I hope the pain eases soon, and you can get on with your life. Take care- PJH

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Lea, Community Member
4/26/11 9:01am

Thanks PJ! I did consider body tissue reconstruction, but I love to lift weights, and my occupation requires upper body strength as well, so I was not comfortable cutting and shifting muscles. A free-flap (no muscle cutting) surgery would have required me to travel to another state, and we were too fearful of the possibility of tissue necrosis. I have one more fill to go (I only wanted a big "B") and I am hoping my body will start to calm down once we stop aggravating it every week! Then we wait 8 wks for the "swap." I am so very glad you had a better experience and I deeply appreciate your compassion. I DO feel blessed that I didn't have to have chemo (I had the Oncotype DX test) and I am so lucky I found the lump, which was invisible even on MRI. It would have been years before screenings found it,(and my other breast turned out to have abnormal pre-cancerous changes as well) so it was a miracle we caught it at all. I know how lucky I am, it's just I get depressed when the PS acts like I am making this up, so I appreciate y'alls personal stories and support! Be well and God bless. Lea.

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PJ Hamel, Health Guide
4/26/11 11:43am

Lea, that's the worst, isn't it? When your doctor, from whom you'd expect the utmost compassion, pooh-poohs the pain you're feeling. I've had that happen to me, too - wanted to just say, "If it's so easy, why don't you have this surgery - then tell me how YOU feel?!" Definitely aggravating. Sounds like you've got a super attitude, though. And remember - every day that passes, you're that much closer to being healed and pain-free. Take care- PJH

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Amanda, Community Member
7/21/11 4:20pm

I have gone on line a few times when I question my pain with expanders...then I am reassured I am not crazy...It was interesting reading this go round of blogs as my pain is incredible at nite and I have to hold my breast when I move.  I feel like I am being a baby.  I mention this to my PS and he just looks at me...it is what it is and hopefuly I'll be ready by September for my final implant.  thank you all for your input.

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PJ Hamel, Health Guide
7/21/11 10:11pm

I'm so sorry you're having this level of pain - every woman's experience is different, and it sounds like you're having a tough one. I don't know if you've read our breast implant series, but you might find some helpful information there.

 

I'm sorry your surgeon/doctor isn't showing a better bedside manner... Hopefully things will improve a bit over the next few weeks, and the surgery itself should be a relief - so best of luck with it, OK?  Take care- PJH

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Kelley, Community Member
10/26/11 7:07am

Amanda- it will be 3 weeks on Friday since my bilateral mastectomy and I am feeling like a big crazy baby also.  I have not even started expansion yet apparently due to the "strength" of my chest muscles, my Ps wanted to wait two weeks for some atrophy.  I am uncomfortable all the time, but starting around 6 pm it gets worse.  My expanders are sharp.  They feel like someone overcooked a tupperware container in the microwave until it got all collapsed and wrinkled and then filled it with rocks and stuck it in my chest.  There are areas where i feel like it will rip through my skin any second.  My right expander seems to be sitting on a nerve or something as every time i move i get what feels like an electrical shock.  Im ready to settle on being flat chested just to get these things out!  Its sad that knowing other people are uncomfortable too makes us feel a little better.  Did things get better after the implants were placed??  Kelley   

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PJ Hamel, Health Guide
10/26/11 8:40am

Kelley, I'm sorry you're going through so much pain. The process can be very tough, for sure. At least htere's light at the end of the tunnel - I hope things get better as you progress through the process. Take care- PJH

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Amanda, Community Member
10/27/11 2:57pm

Hi Kelly,

 

My final surgery has been post poned since my "fills" went a little slower due to pain.  I was suppose to go November 8th but he wants to do 1 more (I don't know how!)  and surgery after Thanksgiving or Xmas.

 

Your discomfort sounds awful...what does your surgeon say about that?  My expander shifts each visit the port has moved...strange...  .

 

I wish you well...

 

Amanda

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Kelley, Community Member
10/27/11 6:24pm

Hi amanda- he thinks I am having muscle spasms. i worked out every day prior to the surgery and he thinks my chest muscles are spasm causing the nerves to rub or something. I am now back on pain meds and trying flexeral to attempt to calm things down. if this has not helped in 24 hours he is going to add some saline to my right expander, hoping to smooth it out and shift its position..this process is definitely more than I bargained for.. I hope your next surgery goes well. k 

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Melanie, Community Member
5/11/12 12:14am

Hello Amanda,

I love your analogy of the Tupperware container, that is how it feels.  I described it to my nurse like an empty square chip bag crammed into a round space.  So very uncomfortable.  And like many others on here I didn't expect the discomfort I'm experiencing from the expanders.  I see your post is an old one.  I'm only 2 weeks post bilateral mastectomies with tissue expanders.  How are you now?

 

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PJ Hamel, Health Guide
5/11/12 5:24am

Melanie, we all get through this one way or another; but it's certainly hard as you're living it, day by day. I wish you all the best, and a steady lessening of pain... PJH

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PJ Hamel, Health Guide
5/11/12 5:24am

Melanie, we all get through this one way or another; but it's certainly hard as you're living it, day by day. I wish you all the best, and a steady lessening of pain... PJH

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Deanna, Community Member
10/10/12 9:32pm

Finally, someone who feels just like me.  I am one week out from my bi-'mmastectomy and the expanders are killing me.  I didn't realize how painfulthiswould be or I would have not had reconstruction.  I see my general surg. tomorrow and my ps Friday and I am seriously considering having the expanders removed and foregoing the reconstruction.  As anyone else done this?

I need something done before I start chemo, I can't stand months of this.

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PJ Hamel, Health Guide
10/10/12 9:51pm

Everyone reacts differently, Deanna. And some women, as unfortunately you're finding, have a very painful experience. I hope your surgeon can suggest something that could help. Have you read all the way through this thread? Some women have found various ways to relieve their pain... I wish you the best of luck. Whatever you do, it's your body, and your decision; don't let anyone talk you into doing anything you don't want to do. Take care - PJH

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Doreen, Community Member
11/19/12 12:42am

Hi,

I'm just wondering how you are doing and if you decided to keep your expanders in?

 

Hope you are feeling better soon!

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Michele244, Community Member
11/19/12 3:35pm

Deanna,

 

HOLD ON GIRL! You wont regret it!!

I too went through LIVING hell with my expanders. Depression, serious pain, I even went on a Pain "patch'' - no lie..

 

Dont give up. You might regret it later...

Couple of options...

 

- Physical therapy - OMG it works.. get your PS to recommend one

- Stretch your arms.. slowly every day - I laid on the floor and did it.. slowly..

- Get a better pain med - if yours isnt working get something else.

- See if your Dr will give you a lidocaine patch.. it helps..

- For me, it was better pain management. I couldnt sleep or walk, it was brutal.

Changing my meds and seeing a Physical therapist "helped" until I could get them out..

 

Also -- check and see if you have "seromas" its fluid under the expanders that sometimes needs to be drained. An ultrasound can find this. I had HUGE amounts of fluid.. almost 100cc's in each side...

 

Hope this helps.. Email me if you want to chat

Michele244@aol.com

 

I'll be thinking about you! Good luck.

Michelle

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Michele244, Community Member
11/19/12 3:35pm

Deanna,

 

HOLD ON GIRL! You wont regret it!!

I too went through LIVING hell with my expanders. Depression, serious pain, I even went on a Pain "patch'' - no lie..

 

Dont give up. You might regret it later...

Couple of options...

 

- Physical therapy - OMG it works.. get your PS to recommend one

- Stretch your arms.. slowly every day - I laid on the floor and did it.. slowly..

- Get a better pain med - if yours isnt working get something else.

- See if your Dr will give you a lidocaine patch.. it helps..

- For me, it was better pain management. I couldnt sleep or walk, it was brutal.

Changing my meds and seeing a Physical therapist "helped" until I could get them out..

 

Also -- check and see if you have "seromas" its fluid under the expanders that sometimes needs to be drained. An ultrasound can find this. I had HUGE amounts of fluid.. almost 100cc's in each side...

 

Hope this helps.. Email me if you want to chat

Michele244@aol.com

 

I'll be thinking about you! Good luck.

Michelle

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Phyllis Johnson, Health Guide
11/19/12 7:21pm

Michelle, thanks for adding your voice of experience.  I remember so well how much trouble you had at first.  Of course, some people have very little trouble with implants, but for those who do, it will help them to hear from another person who had a lot of problems, that you now feel it was all worth it.  Glad you are doing well now.

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Deanna, Community Member
11/19/12 8:35pm

Actually, I stil have my expanders. My PS prescribed an muscle expander which help greatly.  I am so use to the expanders now, I don't need anything.  Even fill-ins aren't bad.  Thanks everyone for the nice thoughts and suggestions,.  Glad I didn;t give up.  I begin chemo next week and will finish the reconstruction late.  Never give up. Have faith in God. Thats all it takes.

 

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Deanna, Community Member
11/19/12 8:35pm

Actually, I stil have my expanders. My PS prescribed an muscle expander which help greatly.  I am so use to the expanders now, I don't need anything.  Even fill-ins aren't bad.  Thanks everyone for the nice thoughts and suggestions,.  Glad I didn;t give up.  I begin chemo next week and will finish the reconstruction late.  Never give up. Have faith in God. Thats all it takes.

 

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Michele244, Community Member
11/19/12 10:39pm

Yeah!! Glad to hear!!! Good luck next week.. :)

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Chantal, Community Member
1/30/12 12:26pm
Amanda, not sure if you check this site anymore, but am wondering how you are feeling a few months out? I'm freaking out over here in my personal misery and wonder about the other side of expansion pain. I hope you are feeling strong and can give good news! Xo chantal Reply
AMANDA, Community Member
1/30/12 1:38pm

Chantal,

I am so sorry you are so uncomfortable...my implant finally went in right after Christmas and I have finally reached the other side 4 surgeries later...it is the first time in a year I have FINALLY felt like myself.  There was barely any pain to this "final" surgery-I kept waiting for it...and I love my implant...it is so soft and nice, not the hard cannonball that felt like was in there. 

 

The only minor complaint I have is my size is not the same and it seemed we overexpanded-but "there are things we can do for that" I'm told...my 3rd post op visit is this week which I will learn more.  I don't mean to be vain but I'm selfconcious being lopsided... . 

 

So there is light at the end of the tunnel...the expander was not an easy time at all I am relieved and so will you soon I hope...

 

Amanda

 

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Chantal, Community Member
2/ 1/12 2:40am
Thanks Amanda, good to know that you are doing well. Are you feeling lopsided because you have one reconstructed breast and one natural, or are they both reconstructed yet uneven? I had a nipple sparing mastectomy with expanders put in both breasts and inflated to a full c cup immediately... Well, now it turns out I I'll have to lose my nipples after all (margins are not great, cancer still there) and a lot of the expansion work I have done already will be in vain since I will have to lose so much skin during next surgery... So I got filled today and my breasts are huge and painful, I'm probably a full D! We are trying to expand as much so i dont have tight round looking implntsvwhen that day arrives. My next surgery is March 8. I'm sad. I'm going from looking like a breast augmentation to being nipple-less, it's such a tease. Anyway, it is what it is. Ttyl! Reply
PJ Hamel, Health Guide
2/ 1/12 4:42am

Chantal, I'm sorry you're having to go through this extra surgery, and lose your nipples, and all the gains you've made. At least the end of this process you'll finally see the pain abate; and perhaps at a later date you can have those nipples "reinstalled!" Good luck March 8 -- let us know how it goes, OK? PJH

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Chantal, Community Member
1/30/12 12:27pm
Amanda, not sure if you check this site anymore, but am wondering how you are feeling a few months out? I'm freaking out over here in my personal misery and wonder about the other side of expansion pain. I hope you are feeling strong and can give good news! Xo chantal Reply
dawn, Community Member
11/ 8/11 10:17pm

Hello fellow expander friends,

I just had my "exchange" surgery last week after having my expanders placed in June following my bilateral mastectomy. I want to encourage everyone going through this very difficult and painful expererience that there indeed is a "light at the end of the tunnel"! Immediately following my exchange surgery, I felt the absence of my expanders and have been feeling great. What helped me a great deal during the long expansion process was ensuring that I was comfortable sleeping at night by getting a script for Ambien, using a u-shape body pillow (on line) which made me feel like I was in a comfy cocoon, and listening to my I-pod. Hang in there everyone! You are all strong, remarkable women and can get though this! Dawn

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Phyllis Johnson, Health Guide
11/ 9/11 6:24am

Dawn, thank you for sharing your experience.  I am sure it will encourage those still in the uncomfortable/painful stage of expanders.  Your tips for sleeping sound like they could help all of us.

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Tammy, Community Member
1/14/12 10:50pm
Hi - I had my expanders changed for my implants 6 months ago and still feel discomfort. Anyone else out there still feel discomfort and occasional pain 6 months after? Thanks! Reply
PJ Hamel, Health Guide
1/14/12 11:08pm

Tammy, it takes awhile for your nerves to heal; and I know from my own reconstruction, the pan can linger for quite awhile. Have you spoken to your surgeon's office about this? Perhaps the nurses would have some suggestions for how you can deal with this discomfort... Take care - I hope you feel better soon. PJH

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dawn, Community Member
1/14/12 11:39pm

Hi Tammy,

 

It has been 10 weeks since my exchange surgery and the pain has just decreased to a tolerable level the past week. I take Advil twice a day and it barely takes the edge off; but I'm unable to take any pain meds as they cause too much drowsiness and I don't feel safe driving! I was actually looking into getting them out as they have been so uncomfortable but feel that I don't have an alternative as I'm only 46 and can't imagine dealing without any chest. How often do you have pain? I did tear my skin graft post mastectomy which resulted in a lot of repair work during my exchange surgery which my surgeon said would extend my recovery. However, I'm frustrated with the 24/7 constant pressure/squeezing. Has your pain level gotten better every month since surgery? thanks for your input.

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SusieQ, Community Member
6/28/09 9:29pm

I have had my expander in for almost a year. After your expander has been expanded for a while your PS should be able to take some of the fluid back out. If you haven't had chemo yet and are already fully expanded it's no wonder you hurt. The pain does lessen as time goes by. The muscle does stretch and will relax somewhat. Since I was going to under go extended chemo because of a clinical trial my PS had me come back about 8-12 weeks after my last expansion to take some of the fluid back out which greatly relieved the pressure. Remember this will not feel so bad once the permanant implant is in place. Hang in there. Do you have a physical therapist? If so, have them show you exercises to do so you can get back your range of motion in your arms. My left shoulder was very painful due to the axillary lymph node disection, but slowly stretching out my muscles really helped. Get your doctor's permission before beginning any exercises and go slow. It's a process, but you'll like the results once you are finished. Stay strong, it's not easy!

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Cr, Community Member
7/ 5/09 10:16pm

I am having a mastectomy on the left and a tissue expander placed.  I have heard that it really isn't that bad.  Maybe it depends on your doc.  The one I have is a top-notch doc in this area.  I will not have to have radiation and chemo, just this surgery.  How bad is it to get it filled each week?

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SusieQ, Community Member
7/ 6/09 12:27pm

Hopefully, your doctor will be conservative and do the fills slowly. You will have quite a bit of tightness the day of the fill and for a couple of days after. It is not really painful, but uncomfortable. You may also feel some pain in your back and shoulder. My doctor told me this is because as the muscle in front is stretched, but muscles in the back and shoulder are also being pulled on. This lasts for a couple of days too. I did my fills over several months because I started chemo about 6 to 8 weeks after my mastectomy. Because the first 4 rounds of chemo were kind of tough and I knew I wouldn't be feeling to good, it took me about 4-5 months to finish my fills. I also had to re-schedule a couple of times because of illness and weather related issues. Although the doctor may have a certain 'normal' schedule, you can take your time and do the fills every other week if they are too uncomfortable doing it once a week. You can also do half fills, which would take longer and require more trips, but might be more comfortable for you. It's what ever you can tolerate. There is no hurry. As I stated, my finish up surgery has to be postponed because of the clinical trial I'm in, So I"ll have my expander in for over a year. I'm really going to be glad to get it out.

 

You might also have some sharp shooting pain from time to time, initially, but that goes away. This is part of the healing process. Nerves get cut and then when they heal and 'wake up' you get a sharp 'stitch' like pain. This does eventually go away. You may also have some muscle spasms in the pec muscle during expansion. Tylenol or Motrin helps with this. This also comes and goes and lessens with time.

 

For the most part I don't notice the expander, but sometimes it feels like a rock. Just remember, it's temporary.

 

Good Luck and God Bless

 

My mastectomy was on my left side too!

 

Oh, I also used a heating pad and my shoulder and chest, just remember to not let it get too hot when on your chest because you won't be able to feel the heat in the skin where your mastectomy is and run the risk of burning yourself, so be careful when using a heating pad.

 

Another tip. After your mastectomy have a pillow to put under your seat belt on the way home and also one to put under your left arm if you don't have an arm rest. Also, a pillow under your shoulder/upper arm at night also really helps.

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Robin, Community Member
5/19/10 5:26pm

Hi Maggie - Sorry to hear you're in pain.   But you're not alone. (For what that's worth, right!?!)  I had bilateral mastectomy done on 2/3, with reconstruction at the same time.   Since mid-March I've had nine fills/expansions - every two weeks.   Each one gets progressively more "uncomfortable."  And with each one, the "bad" period - with the most discomfort - lasts longer.   At first it was 2-3 days, but now it's worked up to 7-9 days.  Fortunately, my PS is very aggressive when it comes to pain.  He's prescribed Percocet, which seems to work.  (This, after a few less successful tries.)   But I feel like a junky, taking 1-2 pills every four hours for a week or more.   Then I slow down to 1-2 at night only, until the next fill when the cycle begins again.   I have 2-4 more fills to get to a full C-cup, but honestly....not sure I can handle it.  I may settle for a B-cup and just get the implants done sooner.   But sometimes I think, "Hell, I've gone through all this - I want really nice breasts!"   We'll see.    As for the chemo, that's a tough one.  It has to be the priority though.  I was fortunate in that regard - had chemo prior to surgery.   I wish you all the best.   There really is a light at the end of the tunnel.  --Robin

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Tina, Community Member
6/10/10 4:53pm

I was recently diagnosed with breast cancer and I am considering a bilateral mastectomy as one of my possibilites.  I am only 24 years old and I know that this is a huge decision to make.  From what I've read on here it seems as though the recovery period is much longer than i had anticipated it would be.  How long of a period of time did everyone have to wait before getting the actual implants and not just having the tissue expanders?

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PJ Hamel, Health Guide
6/10/10 5:46pm

Tina, you might be an excellent candidate for an autologous (body tissue) reconstruction; please read our post on autologous reconstruction vs. implants. As I understand it, it's a many-months process getting implants, as first the expanders have to be filled, very gradually, to stretch your skin; this takes numerous appointments. And only then can the implants replace the expanders. Be sure you research ALL the possibilities for reconstruction before you decide what type to have, OK?

 

And, of course, you'd best do the same for bilateral mastectomy. Even though it seems weird, you can still get breast cancer after a double mastectomy, since some tissue remains. So, speak to your surgeon and/or oncologist about your risk of recurrence or a new cancer, with or without the mastectomies; and be sure you understand that risk. Good luck - PJH

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Michele, Community Member
8/ 7/10 5:38am

Hi Tina

 

First I just wanted to say that I am so sorry to hear that at such a young tender age, you are diagnosed with breast cancer.  I was a new bride at 24 and could not have imangined being able to digest that sort of news.  I am now 45 and on June 8, 2010 had a bilateral mastectomy with expanders due to stage 1 cancer in both breasts. I realize it has been two months since you have posted and may have already made your decision but I still want to encourage you to do your homework and research as much information about your diagnosis and choices as possible. I am very proud of the courage you have to post on this site and ask questions...you have only just begun and already are dong very well.  I will be going for my first fill for my expanders this Monday August 9, 2010 and would not have known how painful the fills were except that I went onto this site and was informed.  I now know to tell my plastic surgeon that I only want 50cc at a time no matter how long it takes to get to my desired cup size and I will definately be digging up my old bottle of vikodyn that I have left over from after surgery.

I cannot tell you what road to chose as far as your treatment but I what I can tell you is even though you are young you are not alone.  God bless you Tina and keep us posted on what you decided to do and what your future treatment plans are. -Michele 

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Tina, Community Member
8/ 9/10 8:09pm

i had the bilateral on friday actually.  the nights r worse 4 me so ive been sleeping during day most of the time.  starting chemo in 2 weeks and will find out my pathology on thurs during my post op.  will post more updates as im feeling better

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PJ Hamel, Health Guide
8/10/10 6:08am

Tina, I hope your path report shows "good" news, and that your chemo goes as smoothly as possible. Best of luck - PJH

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gdeg, Community Member
3/14/11 12:21am

I was wondering how the rest of your breast reconstruction went. I am 53 years old, I had a bilateral mastectomy in June 2010, and went through 6 months of chemotherapy. I have been happy with my prosthetics and frankly only recently have considered reconstruction, and the only reason is because I am physically active and want to swim etc..

 

But after reading everyones posts I am scared off. I have heard and read horror stories about the pain and suffering. I am thinking how can I work, how can function with all that pain. I have a low tolerance for pain as it is, and I very low tolerance for drugs.

 

Is there anyone who says, yes it was not pleasant, but if I had to do it all over again I will?

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PJ Hamel, Health Guide
3/14/11 6:01am

Have you explored body tissue reconstruction? That's what I had, and yes, I'd do it again in a heartbeat. There was very little pain, certianly a lot less than that involved with implants. And it was 10 years ago, and the reconstructed breast looks and feels great. With a bilateral it would certainly be a longer recovery; and yes, it's not pain-free, but I highly recommend a body tissue reconstruction. You may find our posts on deciding whether to have reconstruction, and body tissue reconstruction, quite useful as you decide what to do here. Best of luck - PJH

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gdeg, Community Member
3/17/11 12:03am

I haven't. I will look into that. Thanks so much!

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PJ Hamel, Health Guide
3/17/11 5:58am

Glad we can help - best of luck as you make this decision. PJH

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Phyllis Johnson, Health Guide
3/14/11 9:18am

Because of the type of surgery I had I'm not a good candidate for reconstruction.  In the thirteen years since my mastectomy, I have seen tremendous advances in "swimming" prostheses.  The first one I had floated up and was worse than nothing at all.  The one I have now is designed for exercise and swimming and works great.  If you decide not to do reconstruction, I'd recommend that you look into swimming prostheses.  Your insurance may cover the cost or at least apply it to your deductible. 

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lizval41, Community Member
4/19/11 10:17pm

Hi,

 Just wanted to post a little note to answer your question. In my experience the amount of pain depends on your communication with your doctor. My doctor originally started my fills with 100 cc's. That was too painful. He moved it down to 50 cc's for the rest of the time. I would be sore for a day or two and then I'd be back to functioning normally. I had the fills once a week. I also had the option of waiting two weeks between fills if once a week became too much. There came a point when the fills became too painful and I wasn't able to function normally for days afterward and that's when I said I was done. I have been reading the posts about the people who have been in horrible pain and I'm wondering if maybe their doctors have been a little too aggressive with the fills. The only horrible pain I had was the first fill which was so painful it literally hurt to breathe. My doctor offered to take some of the fluid out that day to relieve the pain (another option) and adjusted the rest of the fills accordingly which were much easier. There are things the doctors can do to keep you comfortable. So, with that being said - yes. I would absolutely do it again. I'm sure every case is different but I thought it might help if you heard one of the more positive experiences to balance it out a bit. Best of luck with whatever you choose!

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pamela35601, Community Member
3/15/12 2:50pm

Thank you for a positive post.  I'm scheduled for bi mast 4/3/12 with immediate reconstruction with tissue expanders.  Reading all these posts has scared me really bad.  I'm already in pain from my last MRI-guided tissue biopsy that went so deep I could feel the entire procedure and has left me in constant pain and nerve damage.  I was actually looking forward to the bi mast to alleviate this post biopsy pain....but after reading these posts...I'm now terrified.  I've been staying calm and positive through this entire ordeal (so far) and didn't give much thought to the reconstruction phase until stumbling across this site.  Now I wish I hadn't started reading all this negative information.  I will continue to remain positive and hope for the best outcome.  I've had a high threshold of pain and hope I can endure this upcoming tissue expanding process better than these scary posts.  Wish me luck !!

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PJ Hamel, Health Guide
3/15/12 3:00pm

Pamela, remember - people are MUCH more likely to post about their negative experiences than their positive ones. So you're reading a "worst case scenario" here. Take this one step at a time; try not to worry too much, because worry accomplishes absolutely nothing beyond making you feel bad. "Terrified" isn't helping - I'm sure you knnow that. Since you have a high pain threshold, I'm betting you'll do just fine... In the meantime, you might ask your hospital folks about Reiki, or any other pain management suggestions they have. It's best to be prepared for the worst, but believe in the best. Take care - PJH

 

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fireflybluesky, Community Member
3/18/12 11:02pm

@Pamela - I had bilateral mast 11/8 with immediate reconstruction w/tissue expanders too. I was expecting some pain afterwards and wanted to share my thoughts with you.

 

Immediate pain - my post-op pain was on my right side (this confused me a bit because the sentinel nodes they removed to test for cancer was on the left). I later found out that I has some bleeding on the right side during the operation, which I attribute to the pain now - kinda like an internal bruise, painful if your gonna go out and use a shovel, but manageable with rest and some meds. Pain would be about 3-4 on a childbirth scale, totally local.

 

Managing pain - I started with 1 percocet when the pain ramped up. The nurse talked me into trying 2 after seeing me wincing in pain while trying to sleep (about a 7 on the scale). I didn't get relief and mentioned to a floating nurse that it seemed to be muscular. She said that some PS will prescribe muscle relaxers and contacted them to get an order. I will say, I experienced immediate relief! I know the PS only put the minimum 50ccs in during surgery, so I was surprised of the pain. But think, your stretching a muscle that has been there for how many years happily doing it's thing?

 

I used percocet as needed 5 days post op - flexirol for ?? days & the days of fills. hope this helps you :)

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PJ Hamel, Health Guide
3/19/12 4:48am

Thanks so much for taking the time to detail your experiences here - it's a huge help to hear from women who've been through the expansion process. Great tip about the muscle relaxers. I hope you're continuing to do well - have you had your implants yet? Must be about time, yes? Take care - PJH

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Tina S, Community Member
8/ 5/12 10:41pm

I had a bi-mast with expanders on 07/24/12.  I am so glad that I didn't read any of these comments prior to my surgery.  I was diagnosed with DCIS on 06/25/12.  The cancer was in my left breast and undetectable with MRI.  Due to fiberous breast tissue a bi-mast was recommended.  Good thing because pre cancerous cells where found in my right breast as well.   I am almost 2 weeks out.  I knew going into this that recovery wouldn't be a walk in the park.  My biggest concern going into this was not waking up after surgery.  I am a wife and mom of 3.  This part was the worst thus far.  In recovery my PS came to see me.  I told him "thanks for waking me up".  He just put his hand on my forehead and said I did great. Has it been a walk in the park. Heck no!!  I'm here though.  I know this will pass and the discomfort I feel is temporary. 

 

I have a lot of tightness on my left side and I attribute that to my nodes being removed. I hope to have my drain tubes removed at my next visit 08/07/12.  I think that will give some comfort.

 

Good luck to all of you who are dealing with this wonderful think called breast cancer.  Stay strong and keep positive. 

 

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PJ Hamel, Health Guide
8/ 6/12 5:36am

Tina, I hope you continue to enjoy an uneventful recovery, and feel better and better with each passing day. Thankfully, DCIS is the only truly curable breast cancer; and women with DCIS have about a 99% survival rate, so statistically speaking, you should be in the clear. Best of luck to you as you continue to heal - PJH

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Tina S, Community Member
8/ 6/12 8:28am
Thanks PJ. I feel very very fortunate to be in the situation I am in. No chemo or radiation needed. Do you or anyone have any suggestions how to prepare for the removal of drain tubes. I am anxious about the pain and process in general. Reply
PJ Hamel, Health Guide
8/ 6/12 9:29am

Tina, just close your eyes and hold your breath - my experience was it was about as fast (and painful) as getting a shot, or a bee sting. When they took mine out, they just gave 'em a quick tug and they snapped out. OUCH! But over in a half-second. Speak to your surgeon's nurse for more information, but I really don't think it'll be an issue for you... Take care - PJH

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Dina, Community Member
11/27/11 9:30pm
Hi Tina, I'm 24 years old & tested positive on both the BRCA tests 1 & 2 for the cancer gene. I have had a double mastectomy & reconstruction for prevention purposes. I'm 2 weeks post op & have already had 2 fills in my expanders. My PS estimates the entire process to take 3-4 months before my implants replace my tissue expanders. The expanders are beyond annoying but I'd have to say the hardest part for me would be adjusting to sleeping on my back. Also, I've been experiencing a fever ranging from 99-101 has anyone else had this problem?? I hope all is well with you! Reply
Phyllis Johnson, Health Guide
11/28/11 6:10am

Dina, please let the doctor know about that fever.  It might be just a "bug" that's going around, but it also could be some sort of post-surgical infection that needs treatment.  Some people find that sleeping in a recliner is more comfortable than sleeping flat on their backs.

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E.S., Community Member
6/10/10 10:20pm

I had bilateral mastectomy with immediate tissue expander placement on 03/18/10.  Nobody ever told me how painful the tissue expander process is...it is extremely painful, at least for me it is. I just had my last expansion yesterday 06/09/10. The best advice I can give is to pre-medicate prior to your expansions, wait 7-10 days between each expansion, only allow your Dr. to expand 50cc or less in each breast at a time. My Dr. added 125cc in each breast and I cried for the entire week day and night with no relief from any pain meds!! I found that 50cc was perfect for me.

Good Luck and God Bless you!!

E.S.

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Debra, Community Member
6/18/10 6:16pm

Hi I had a mast on 3/23/10 with te inserted on that day on the cancerous side.  Did well for a month or so, was actually glad to have a drain re-inserted for two weeks until I developed an infection at the site, and removal of the drain.  After that it went downhill fast, developed a redness and white hot pain in one quadrant.  Liquid continued to pressurize the area, ps tested the liquid for infection and none was found.  I wanted to write because it did finally get a little better...he removed some of the fill (about 60 cc) and left it that way.  I think a lot of the pain was because my body was not re absorbing the liquid, when that finally happend the pain lessened to a tolerable level...the reabsorption happened within an hour or two, my back felt itchy (like a healing itch) one night and the next day the pressure and swelling was only about 50%.  Had 30cc reinserted and all's well, will have another 30 or 60 in the next couple weeks and then I begin radiation.  I really wanted to write because when I had the white hot pain and redness I couldn't find any blogs that turned out well, every one seemed to have had to remove the te.  the plan is to radiate 7 weeks and then two implants, since I was an A before I am just happy to be a B, couldn't really imagine filling any larger. 

 

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rose kennedy, Community Member
7/13/10 7:26pm

hi e.s. i am going through the tissue expander now actually the same date as u 100 cc every 2 weeks, 2 more to go. how long after the last refill then you get your inplants. did u work during the refills.  i am still off work still has a lot of pain.

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E.S., Community Member
7/13/10 9:16pm

Hi Rose, no, i didn't work. One of my biggest problems was not being able to sleep at night because it was so painful. I was exhausted by the time i needed to be up for work.  I have a 3 year old who wakes up during the night and i didn't want to be all drugged up on pain meds/sleeping pills at night..I am single Mom and a R.N. so I really needed sleep to function. I am having the swap done in Sept. (that will be three months from my last fill). Good luck!! I recommend support groups too!! I found myself getting  a little depressed.

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joan, Community Member
9/ 2/10 9:29am

have you had exchange surg. yet? If so , does the discomfort go away? I'm miserable with this expansion process. I tried going down to 40cc and it was still awful!

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E.S., Community Member
9/ 2/10 10:33am

HI Joan, no, I haven't had the exchange surgery yet. It seems the girls in my doctors office have not submitted the request to my insurance company! The request was suppose to be submitted a month ago!! Needless to say, I am heading to UCLA tomorrow to consult with another doctor in regards to my exchange. This was just the last straw in a string of events with this office!!! The dr. was great but not happy with girls in the offfice at all!!! So, yes, I am still in a great deal of pain! I just want these T/E out!!Laughing Hope your doing well. Keep your head up and smile on your face. God Bless you!!

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Lori, Community Member
6/30/10 7:33pm

I was just wodering what it feels like when they take the drain tubes out? After reading everyones comments I'm braving the storm for my fills.  I start July 2, 2010.  I've made this far bring it on

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PJ Hamel, Health Guide
6/30/10 9:28pm

Lori, I've had mastectomy drains out - it was a quick, biting pain, like getting a shot. Ladies, can anyone describe the pain of getting your expander drains out to Lori? Thanks - PJH

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Sandra, Community Member
7/ 4/10 5:09pm

Wow....just read everyone's experiences.....makes me cry, but also with relief, as there are times I don't think I can take the pain anymore....nothing relieves it....Had a bilateral skin-sparing mastectomy on May 21 of this year with immediate expanders put in....I had had implants 22 years ago, so this made it possible for them to expand me faster than most..  So I immediately got 300 cc the first time.  with/drains....then the next expansion was 200 cc....I thought I was going to die from the back pain but fortunately I was warned and the true pain only lasted a day - uncomfortable to say the least but it got better.  The next fill was 50 cc....couldn't take anymore.  The last? one is supposed to be in a couple weeks at 75 cc....that will make me a small D which is where I was to begin with. 

 

Wow - I feel horrible with these expanders.   Days are not so bad, but night time is a nightmare....no comfortable position and the strangest tingle/pain constantly....really hard to explain the feeling.  I am so sick of the pain that I feel at times that I could scream....but, like the rest of you, I want to look good when all is said and done so I tolerate it....I am a nail tech by trade, so going back to work was hard and the muscles tighten until I want to cry....nothing helps the pain....not even the narcotic pain relievers....I alternate between Tylenol and Advil during the day, but it is only a "band-aid".....

 

Does anyone else experience the strange tingling - almost like you have frozen your fingers and they are thawing out - pain almost constantly?  Cold makes me incredibly miserable and the constant pressure is almost mind blowing..   They don't tell you any of that....and I am going to Mayo which is an awesome place to be.....Please help me out if you have any advice on what to do...

 

I am having a benefit given to me in a couple weeks, as I am self-employed and when I don't work there is no income, but if I have another fill before then I won't fit into the cute shirt I had made for the occassion.  This is hell....and anyone that says it isn't is a liar.....God help us all.....it makes it hard to be thankful that the cancer is gone...I am one of the fortunate few that does not have to have chemo.....I am so looking forward to the implants and being done with the stretching.....talk to me ladies...

 

Sandradee1950@mchsi.com

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PJ Hamel, Health Guide
7/ 4/10 5:53pm

Wow, Sandra - that sounds so tough... I'm sorry I can't help, as I had a TRAM flap reconstruction. Does your cancer center have a pain clinic? You might check that out. Ladies, does anyone have any comfort or words of advice for Sandra? PJH

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Mary Doyle, Community Member
10/31/10 11:50pm

Hello, I am giving myself permission to be in tears. I had a double mastectomy on 10/12/10 with tissue expanders for the reconstructive phase. My PS did give me a heads up that my mastectomy would be nothing pain wise to the expansion process. It all happened so fast and I am one of the lucky women that will not have to have Chemo or Radiation because they caught my cancer early enough. The only fill I have had was the same day as surgery. Just had my drain tubes removed on 10/28. I was having to much pain in my right breast that he decided not to give the fill. I nearly died when I saw the 2 huge syringes filled on the counter!Yell I appreciate you sharing your story and I know it's going to be hell, and I know I'll be settling for a B cup! My next PS appt. is 11/8/10. I will definitely get medicated and have a driver.

Feel free to talk to me and God Bless,

doyle1101@q.com

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PJ Hamel, Health Guide
11/ 1/10 4:33am

Hi Mary - Take heart; with medication, you might find that it's not as bad as you think. Please try to think positive; if you "know" something is going to be awful, then that can turn into a self-fulfilling prophecy. What if you decide it's not going to be so bad, with the help of drugs? You might dread it less, go in less stressed, and have a better experience. Give it a try this next time; and hey, "settling" for a B cup isn't so bad, right? If you're into larger breasts, it's certainly better than nothing... Manage your expectations to fit the situation, and you'll be happier all around. Take care- PJH

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Mary Doyle, Community Member
11/ 1/10 10:52am

Thanks so much for your reply. I am trying my hardest to stay optimistic on next Mondays PS appt.

 

I had a horrible night of pain in the right breast(the one that had the cancer).Burning pain that radiates through to my back. Every breath I take I feel the burn.

Did you ever feel like the device on the spacer that they have to find to inject was moving around? I feel like if I could go under my breast and somehow move clock wise I might get some relief.

 

Narcotics don't mix with me, so I have to have something to offset the nausea. I keep telling myself that any pain and misery from drugs is worth not having Chemo or Radiation.  

Thanks again for the support,

Mary

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PJ Hamel, Health Guide
11/ 1/10 12:49pm

Mary, I'm so sorry this is such a rough procedure; including the nausea. Wow - you really did draw the short straw! Here's hoping this time goes better... I'd ask your surgeon about the "moving around" sensation you have; or take this quesiton, and turn it into a sharepost on this site, so more women will see it. That'll give you a better chance of someone who's been through it responding, and sharing any tips they have. PJH

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shsh, Community Member
1/ 7/11 4:46pm

Have just found all of you and 'enjoyed' reading your messages. I had been feeling pretty alone, because I'm in Italy - and nobody told me how painful this expander would be. I had a left side mastectomy just before Christmas, and they put in an expander and immediately filled it up with 200... whatevers. I can't believe what it feels like - it's like having a brick inserted under my skin - it's not 'discomfort', it's sore. Last week I would have told them to take it out if it were easier. They say that I'll get used to it; I'm not sure what I think of that. It's hard to have to get used to this level of pain. I too feel exhausted as being in pain is tiring - and of course you don't sleep really well. I'm a bit freaked out about the idea of being like this for about 6 months - which is the plan that my doctors gave me. I'm supposed to go back to work on Monday - I'm a teacher - and that is going to be really hard.... my shoulder hurts and .... moan, moan, moan....! Thanks for writig up your stories though. It helps to know you're not alone.

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joan, Community Member
9/ 2/10 9:16am

I hope you read this post, I am going through this right now, find it unbearable, you are  past all this, does it get better?? They really minimize the pain this causes, any advice?

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PJ Hamel, Health Guide
9/ 2/10 6:04pm

Joan, you might try posting this comment as a new question in our question and answer section. You're more likely to get more visibility there. You could also scroll through this thread, and send a private message to any of the women posting by simply clicking on their name, then clicking "send a message." Good luck - PJH

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frightened RN, Community Member
9/26/10 11:33pm

Whew! Sounds like EVERYONE is having a lot of pain with the expanders and  am getting a little worried! I am an RN age 57 bilateral mastectomies 9/9/09 and will have expanders 10/4/10.

Things  I learned from this format is to ask for a muscle relaxant (flexaril probably) because when they cut the muscle it makes sense that there are going to be muscle spasms. 

Also to ask for only 50 cc in each breast each time.

I plan to use Motrin but I think my MD wants me to wait on that for at least 2 wks post op because of potential bleeding.

No one mentioned ice packs, sounds good to me but will ask the Dr.

Getting a lot of pillows and may sleep in a recliner.

Can anyone tell us that it was easy and not that painful, one lady in my support group said it wasn't bad at all.  Best wishes to all! 

No chemo or radiation needed for me and my daugher is an RN so she will be taking care of me for 4 days I feel very blessed!

 

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PJ Hamel, Health Guide
9/27/10 6:16am

It's human nature that people tend to share their tough experiences more than their peaceful/easy ones... I know there are plenty of women who've had expanders/implants where the process wasn't "too bad," as your acquaintance says. Sure, there's pain; and for some women it can be pretty tough. But for many others, it's something you'd treat with Motrin. At any rate, there's a definite light at the end of the tunnel. Best of luck to you - PJH

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Sigster, Community Member
9/30/10 4:08pm

I had bilateral mastectomies with immediate reconstruction with tissue expanders last Wednesday, 09/22. So I'm 8 days postop. My drains were removed 5 days postop. My plastic surgeon will start filling my tissue expanders next Monday, 12 days postop. I made a big mistake and read blog after blog after I was diagnosed with breast cancer on 09/03/2010. The more I read, the more scared I became. The surgery wasn't near as bad as I had come to expect. The blogs made it sound like the world was coming to an end, which is very far from the truth.

And I made the same mistake again, trying to find some info regarding how to prepare for tissue expander fills. The blog posts, again, are nothing but negative and raise your anxiety level. Nobody here is doing anyone a favor by scaring others to no end. If you have such huge problems with your tissue expanders, make it abundantly clear to your plastic surgeon! Wanting to look good afterwards??? Are you kidding me? We are dealing with cancer, ladies! Why would you go through a ton of pain, just to have a certain size breast? I am grateful that my cancer is gone, I don't need a C or D cup to make myself feel good! For myself, I have found that a positive attitude makes all the difference. My husband tells me that I have a very high pain tolerance, and that may be true, but I also am grateful that God has answered my prayers and for all my supportive friends who have helped me through this.

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PJ Hamel, Health Guide
9/30/10 8:22pm

Hi - Glad to hear your surgery and the implant procedure are going well for you. Thanks so much for reporting your positive experience here - as I said before, it's much more likely people will take the time to report negative experiences, than positive ones. So - thank you for connecting here! PJH

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Queen, Community Member
9/ 1/12 11:55am

I just had a masectomy on August 9 , 2012 with immediate reconstruction I have read a lot of the post here and wish I had read this before my surgery with tissue expanders. First of all I would like to say for those of you who talk about positive and negative experiences it has nothing to do with being poistive or negative its about woman relating about what their experience has been. I too have  had a bad experience with these tissue expanders I have not been able to sleep at night and yes they do feel like a brick inside your chest. I was diagnosed with invasive ductal breast cancer on June 26, 2012 and when you are not presented with all the facts it is very disappointing because doctors don't give you enough info I did not even know that there would be a second surgery . The way it was expained to me was that it would be a one time sugery I was told that implants are not permanent because they will need to be replaced every seven to ten years.  I was not well informed after being diagnosed you have so much on your mind. Just because their are ladies who are experiencing pain does not make their story negative it is the truth had I known what I know now about tissure expanders I would have never had it put in . I have had so many sleepless nights I am not a whimp but the pain has been unbelievable all I could do is cry and pray . Most doctors try to describe the pain as uncomfortable  but  the truth is for some of us this is more than just uncomfortable. My family has witnessed how I have changed because pain will change you.  I was not told about pain meds this is something that should be discussed in the beginning I believe the doctors I have are very good doctors but the fact remains that we should be told everything.  I've decided to have my tissue expanders removed because to me it is not worth the pain. I don't care what people say about my chest area because I know why I look the way I do and that I have my life and I am a cancer survivor. I believe everyone should be able to relate their personal experience weather it is pleasant or unpleasant everyone has to do whats best for them. I don't consider my story negative just informative and those of you who have gone through this process without pain or minimal pain God bless you and the same for those of us who have been through the pain of reconstruction it does not make us a failure . I know I am not a failure Im doing whats best for me. Thank you ladies.

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PJ Hamel, Health Guide
9/ 1/12 12:26pm

I am so, so sorry you've had such a tough, painful time with the expanders. I think most women would agree, surgeons totally downplay the amount and duration of pain you might experience. They also fail to inform women fully about body tissue reconstruction, in my opinion. That's the route I chose - it was a long surgery, and painful for a day, uncomfortable for a couple of weeks, but it's been fine now for 11 years - and never any need for a replacement. Statistics show, the vast majority of women aren't fully informed about their reconstruction options - or even about reconstruction at all. I hope as we move forward with awareness, this will change. In the meantime - it's your body, and you've done what's right for YOU - that's what matters. I hope you feel better soon, and have an uneventful recovery once the expanders are removed. Best of luck to you, and thanks for connecting here - PJH

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Michele244, Community Member
9/20/12 10:40pm

Queen -- Tell it like it is! There is no holding back.. If you scroll up you will see weeks of my posts where I thought I would die with those freaking expanders. They are hell. No way around it! When I hear that someone says you can go back to work in 2 weeks.. I want to say "Are you kidding me?" Maybe 2 in 1000 people.. Not me...

 

The words "discomfort" or uncomfortable are an understatement.. Its like wearing a tight underwire bra that never comes off, and your pectorial muscles throb all day. - I know, I lived it! I cried every day until I decided to make some changes and take matters into my own hands.. My PS just said " You'll get better, have a good day".. After 10 weeks I got another Dr. And she saved me!

 

Here's my suggestion.. Use what will help you..

 

- Check and see if you have seromas ( bodies of excess fluid under the expanders) this amplifies the pain sometimes.. a simple ultrasound will find it and your PS should be able to do..

 

- If your having some really bad thoughts, or depression.. ask for something NOW.. you wont be on it forever, but it may help take the edge of.. pain leads to depression.. and quickly!I used Cymbalta for 4 months.. Have been off for 3 mos.- It worked!

 

- Muscle relaxers were my savior and a pain patch.. I was the extreme in pain, and I was eventually sent to a Pain clinic.. Your PS will not prescribe pain medication beyond a temporary period. Get someone to OWN prescribing and treating your pain.. Your insurance covers it.

 

- If Physical therapy is an option, find a place that does it for Breast cancer patients.. If not.. lay on your bed.. or a floor... and stretch your arms very gently... For you, probably not for a month or two... I did it in month 3...

 

I just had my transfer in June -- Silicone gel breasts.. They are not perfect yet, but feel 100% better than the expanders... I was Diagnosed Jan 16, 2012, Surgery 2.21.12 and transfer surgery June 20th... Its now 8 months and its still  not 100%.. But I am getting there and I am not having to have chemo or radiation...

 

IDC Stage I ER+ Her2-  Onco DX test 13% re-occurrence... Im on Tamoxifen for the next 5 years...

 

Good luck to you.. feel free to write back anytime.. I'll pray for a painless week for you friend!

 

Michelle

 

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Michele244, Community Member
9/20/12 10:40pm

Queen -- Tell it like it is! There is no holding back.. If you scroll up you will see weeks of my posts where I thought I would die with those freaking expanders. They are hell. No way around it! When I hear that someone says you can go back to work in 2 weeks.. I want to say "Are you kidding me?" Maybe 2 in 1000 people.. Not me...

 

The words "discomfort" or uncomfortable are an understatement.. Its like wearing a tight underwire bra that never comes off, and your pectorial muscles throb all day. - I know, I lived it! I cried every day until I decided to make some changes and take matters into my own hands.. My PS just said " You'll get better, have a good day".. After 10 weeks I got another Dr. And she saved me!

 

Here's my suggestion.. Use what will help you..

 

- Check and see if you have seromas ( bodies of excess fluid under the expanders) this amplifies the pain sometimes.. a simple ultrasound will find it and your PS should be able to do..

 

- If your having some really bad thoughts, or depression.. ask for something NOW.. you wont be on it forever, but it may help take the edge of.. pain leads to depression.. and quickly!I used Cymbalta for 4 months.. Have been off for 3 mos.- It worked!

 

- Muscle relaxers were my savior and a pain patch.. I was the extreme in pain, and I was eventually sent to a Pain clinic.. Your PS will not prescribe pain medication beyond a temporary period. Get someone to OWN prescribing and treating your pain.. Your insurance covers it.

 

- If Physical therapy is an option, find a place that does it for Breast cancer patients.. If not.. lay on your bed.. or a floor... and stretch your arms very gently... For you, probably not for a month or two... I did it in month 3...

 

I just had my transfer in June -- Silicone gel breasts.. They are not perfect yet, but feel 100% better than the expanders... I was Diagnosed Jan 16, 2012, Surgery 2.21.12 and transfer surgery June 20th... Its now 8 months and its still  not 100%.. But I am getting there and I am not having to have chemo or radiation...

 

IDC Stage I ER+ Her2-  Onco DX test 13% re-occurrence... Im on Tamoxifen for the next 5 years...

 

Good luck to you.. feel free to write back anytime.. I'll pray for a painless week for you friend!

 

Michelle

 

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Phyllis Johnson, Health Guide
9/21/12 6:25am

Michelle, we are so glad that you are feeling better now that you have the implants in.  You have had a tough journey with this.  Thanks for sharing tips about what got you through.  

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sue, Community Member
8/ 5/11 4:17pm

hi there this is sue and i'm post out june 17 this yr, 2011. i had immediate expanders with weekly fills some wks worse than others, but i'm getting there!!  ok heres kind of a difficult decsion for me so i'd love to hear some advise.  i am 5'9 amd 160-170 lbs and basically always been, as a kid, one of the nice comment was, wow you're a carpenters dream flat as a board.  i'm 51 and its of course different now, kids can be crueal and i dont hear those comments anymore and if i did it 's dfferent now, so what if i'm flat as a board.  ok heres my deleima i'm thinken what the hell i'm going through all this why not get some bigger boobies???:-)  regardless my husband is supportive either way, so so supportive!!!  now i talk to friends etc that are c's or d's and when i say well i'm thinken i want a full c or just barley a d cup they so oh my g-- dont do it i hate mine its stupid, they get in the way and on and on.  so i'm still thinken a full c, but last sunday i had to go in an get some saline taken out, i decided to try a 90cc fill compared to myusual 40-50, oh my i wash a hurten unit, much better now:-), ok so i'm a small c now and i being vein thinking about a small d cup??  i know it shouldnt bother me what others think, and it wont but do you all that have expanded from like a acup to a full c or a small d cup reget it???  sure would appreciate some of your alls advise!!!

thanks all,

sue

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Phyllis Johnson, Health Guide
8/ 5/11 7:40pm

Sue, one of the few advantages to have breast cancer is that you do get some say about how you will look after reconstruction.  So you don't need to be as "flat as a board" anymore if you want a change.  Your friends are probably advising you not to go too large because large breasts can cause shoulder stress and other problems.  See how you look when you reach a little larger than your old size.  Try on clothes, and see what you think at that point.  

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pam, Community Member
9/22/11 10:16pm

I was diagnoised with breast cancer in 2007 and later had to have a mastectomy in april of 2008. I decided to wait to have reconstruction done since I had to have aggressive chemo and radiation.  I will be having surgery on Oct 4 2011 with tissue expander and about 4 months another surgery swap with implants.  I am hearing so many stories but I have talked to some people that said it was uncomfortable but not to bad.  The 1st fill was so uncomfortable where they couldn't hardly move but the next fill was reduced.  I am really scared becasue I also suffered a mild heart attach and hoping that everything goes well. I know this is a long road for me but my doctor alreadly perscribe pain killers and muscle relaxes for me. 

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PJ Hamel, Health Guide
9/23/11 6:20am

Pam, millions of women have gone through this, and recovered and gone on to lead healthy lives - so take comfort in that fact. Make sure all the doctors concerned know about your heart issue; that's an important fact.

 

Our series on implant surgery might help demystify the process, and give you confidence. Take the painkillers, even if you think you don't need them; this will help prevent pain from developing. And remember, every day that passes, you're that much closer to being through the process and back to your "new normal." Take care- PJH

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pamela35601, Community Member
3/15/12 3:05pm

AMEN sister !!!   I started reading these posts because my surgery is upcoming for bi mast with immediate reconstruction with tissue expanders.  These posts have terrified me to say the least.  Thank You for your post.  It made me feel a LOT better because I was thinking the same as you..why post all this negativity and scare us pre op ladies.  I just want this cancer out of me and I will deal with the rest !!

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PJ Hamel, Health Guide
3/16/12 8:52pm

Pamela, I'm glad people find this a safe and welcoming place to post their difficult experiences with cancer - but it's too bad they can prove scary to those yet to go through treatment! As I've said many times, people are much more likely to post about bad experiences than good ones; so assume that for every painful experience you read about here, there are many other women who came through it all just fine, without severe discomfort. I wish you all the best as you go through your mastectomy and reconstruction - and I look forward to you coming back here and posting, "Hey, it wasn't so bad..." Good luck - PJH

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deejon, Community Member
10/13/10 11:13pm

I would love to know how you are doing...I am facing the same situation as soon as I get up the nerve! Please be honest....I really want to know if the pain is as bad as it sure seems to be.

Thanks and good luck!

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PJ Hamel, Health Guide
10/14/10 5:41am

Keep in mind, people are MUCH more likely to report their bad experiences than their good; please don't let the fear of potential pain scare you away from a procedure you really want. Good luck - PJH

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truckee, Community Member
10/20/10 2:06am

to DeeJon,

 

I too read these posts regarding the te pain and it scared me so bad I wouldn't blog about it.  I had a double mastectomy with immediate reconstruction starting with the tissue expanders on August 6, 2010.  I have a wonderful ps and she is taking things slowly and I didn't have to request special procedures.  The first fill of 50cc caused me to have back pain between the shoulder blades for only 24 hours.  I took one small valium and used heat on my back and I was fine the next day.  There was tightness but nothing uncomfortable.  I've had 3 more fills since then at 3 week intervals and have had no pain as bad as my first time.  Yes, the expanders do feel (and look) like blocks but that's minor compared to what we've all been through.  I do go to physical therapy and I think that and walking help.

 

Good luck and believe that it won't hurt.  Peace

 

Truckee

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Sandra, Community Member
11/ 2/10 9:26pm

Hi Ladies....Sandra Dee here - you will see my post earlier in the thread.  I have to admit that my post sounded horrifying.  I was going through a really tough time, but guess what....????  I made it.  I guess I made it sound worse than what it truly was.  My first expansion (300cc) in the hospital, was fine - it was the 2nd one where they put in 200CC that was the worst.  They don't usually expand that fast, but I lived about 300 miles away, so they were trying to save me from making so many trips. 

 

I survived and after about a week, it got better.  I continued to work and did everything I needed to do.  My reason for posting was just to express what I was personally going through, which is what I thought the reason for this forum was.  I just wanted to share and hoped others were in the same boat so I knew it was normal.

 

My next expansion was 50 cc and the last was 60cc which brought me up to 610 cc's.  Whew....I stayed there for three months, as that is Mayo's procedure.  Yesterday I went back for "D" day - deflation.  They typically expand you more than you want to be so that when they do the implants, there is more of a natural look.  After about 2 weeks from the final expansion, things settled down, and other than the discomfort of these "things" being in my way and my depth perception being off, the pain was mostly gone and all was tolerable for the three months.  I even went back to working out at the gym, albeit, less weights. 

 

Yesterday's deflation was a piece of cake and in 5 weeks I get my final implants.  Size was important to me as I wanted to be at least what I was prior to the surgery.  I realize it is not that important to some. 

 

I am now very glad I went through it all and I would do it again.  I found that pushing my breasts together (as much as they would go) and holding in that position a few seconds often throughout the day, somehow took the strain away.  As a nail tech, my clients would laugh at me when I would just stop doing their nails and do that....I do have a good relationship with them.

 

Hang in there ladies....I apologize if I personally scared anyone.  Yes, the cancer is gone and I am thankful to God for that - and yes, I hung in there and will be happy and thankful in the end.  God bless all of you and feel free to e-mail if you want to.  Sandradee1950@mchsi.com.

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PJ Hamel, Health Guide
11/ 2/10 9:46pm

Sandra Dee- I love that you came back here and shared your story, and this message of hope. You rock, girl! Hope everything continues to go well for you. Take care- pJH

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Sigster, Community Member
11/ 2/10 10:47pm

I'm doing very well. We are done with the expansions. My plastic surgeon expanded me once a week and, since things are going so well, he will exchange these "bowling balls" for the permanent implants in four weeks. Don't get me wrong, this is not all fun and games. I am uncomfortable at times, but I know that it will end soon. This is not the worst pain/discomfort I have ever had. After a ruptured appendix, a ruptured ovary, two broken legs, and peritonitis twice, this pain is minor. The only problem is that you have to put up with it for a while and it might get on your nerves. Taking a hot bath makes a big difference for me. Lay in the bathtub, light some nice smelling candles, and relax. It helps! I took 800 mg of Ibuprofen once during the expansion process. That's it. Hey, not everybody knows how blow-up dolls feel, but we do! :-)

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tecovas, Community Member
12/ 2/10 2:46pm

Hi ladies, I've been reading about your "adventures" with tissue expanders and I have a question.  I had a mastectomy on Nov. 9 with a latissimus dorsi flap put in.  They had to remove a lot of tissue because this was a recurrence.  I had breast cancer 16 years ago in exactly the same place.  I had radiation at that time so I had a lot of damaged tissue.  I thought I was doing OK, but this week, my breast has really gone over the top in terms of pain and tightness.  The breast was very stiff before, but now it feels like it's softer.  However, it also feels like I'm already being blown up.  Mind you, I have not started the expansion process yet.  I've never been through anything so painful and I don't know what's normal.  The doctor keeps telling me everything looks great and progressing on schedule.  I know everyone is different, and it sounds like this can be very painful, but is everything OK or should I be seeking more help from my doctor?  Teresa

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Sigster, Community Member
1/ 7/11 10:48pm

Did you talk to your plastic surgeon about the increased pain? That is not normal, and it is not normal to already feel like you have saline in your expanders when they're supposed to be empty. You might have a fluid collection around the tissue expander which may be pushing on your chest, causing a lot of pain.

I just had my second stage surgery yesterday. He removed the expanders and replaced them with the permanent implants. The anesthesiologist, a very good friend of mine, told me they look great. Not fair that he got to see them before I did! But anyway, they feel great, and the immediate relief from the pressure from the expanders is like heaven. My husband keeps staring at them with this admiring look on his face, it's hilarious! I'm quite sore on the right side where my surgeon had to revise the pocket, but it's nothing I can't handle. He'll create the nipples in 3 months, and wants to do a fat transfer. Since I only weigh about 95 lbs and have no abdominal fat, it'll be difficult. I might have to ask somebody for a fat donation!

The worst part for me was the waiting for the exchange. The tissue expanders got on my very last nerve toward the end, but now it's over and I'm very happy with the result. These guys actually look much better than the 32 almost A that I used to have! I don't at all regret the decision I made to have bilateral mastectomies.

What I would like you to understand is that the expansion process is not near as bad as you probably think. He did my expansions once a week with 50 cc each breast each time. I hope things will go smoothly for you and I wish you all the best. God's speed!

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PJ Hamel, Health Guide
1/ 7/11 11:16pm

Thanks so much for taking the time to share your experience here. It helps women gonig through the expander process (or about to) SO much to hear something positive. It's scary, not knowing what to epect; and how your body will react. I'm glad you've had such a good outcome! Cheers- PJH

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sue, Community Member
8/ 5/11 3:40pm

Hi Maggie, I had a prophlactic bilateral mast on june 17 this yr, 2011.  the reason being is i have BRCA positive mutation that shot my % up to 89% that i would get breast and or ovarian cancer.  along with the mutation my mother passed at an early age, 1st breast CA then back as ovarian which is what finally took her from us.

so i had a hyst yrs ago due to frequent abnormal paps, after mom passed my gyn advised removal of tubes and ovaries, so there gone.  also at that time she sent me to a genectic councelor which did history work up, gma and aunts also had breast CA etc.  so he advised the blood test to check if i had the BRCA mutation, in other words it would not fight CA if i did get it.  what a tuff, tuff decision, however a no brainer as well. now to relate to this horrible pain, spasms etc.  i also thought about getting them out, i'm at about a c right now, i was a barley a be cup b4 so i thought what the heck i'm going through this, i'm 51 yrs old why not see what it'd be like to fill a bra, switsuit ect.  however it hurts, with each fill, i talk to support people, drs etc and they tell me alot of women say get them out dont care anymore then later regret not waiting a little longer.  so whats helped me is my ps put me on as needed muscle relaxers and they helped alot, takes a couple of days after fills to kick in, but thats my fault to a point i dont slow donw and alow my self r+r!!  fyi its a low dose valum which i take one b4 bed and sometimes depending on the spasms/pain i'll take a couple throughout the day.  but its the lowest dose because they are a sedative.  they dont take it all away but they help alot, once in awhile if really bad i'll take a hydrocodone, but its a nacarotic so i dont want to have to rely on them.  your situation is different you have CA so maybe these suggestions wont help, but i totally wish you a great recovery and for my womanhood persay i think will make me feel a little sexier:-) i'm not a vain person, but since i had to do this i thought what the hell i what a little more:-)  one more thimg they did also remove my nipple and aereolas, theres procedures where they can rebuild those as well, however not sure if i'm going to do that, afterall my hubbys the only one that will see them and he's my greatest support, "whatever you choose, reconsruction w/implamts rebuild nipples etc, you'll alwways be sexy to me:-)  i'll close for now i know i wrote a book and i hope it helps in a little way, maybe try the muscle relaxers?? i eill add you to my prayers Maggie!!

sue

n

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msgina, Community Member
9/23/11 2:49pm

Im 29 and I will be have bilateral mastectomy this Monday 9/26/11 and  i have not been able to have my family understand my fears.. Thank you for posting your fears and outcome of surgery . This has help me to get back on track .. keep staying positive

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PJ Hamel, Health Guide
9/23/11 8:18pm

Gina, families sometimes have a hard time validating a loved ones emotions during cancer - it's so raw, that some people just can't "go there." They choose to stay in denial, unfortunately. I'm sorry this seems to be happening to you. I'm glad you've found us here at this site; we'll be here to support you as you go through treatment and recovery. Please come back anytime - ask questions, vent, or share your experience. We;re here for you - and best of luck with your surgery next week. PJH

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gisa, Community Member
1/15/12 10:27pm
Hey I'm also 29 and I had double mastectomy last year April 29. If I had read your message before I was going to advice u to have Chemo first and radiation and surgery I think is much better I'm feeling very uncomfortable with expander and I can't imagine if u have expander and chemo at the same time. Reply
Phyllis Johnson, Health Guide
1/16/12 6:04am

Thanks for sharing your experience.  I hope you feel much better once the expanders are out and the implants are in. 

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Jene, Community Member
3/19/12 4:55pm

My bilateral mastectomy was March 1st, with expanders being installed during surgery.  My"team" are all lady physicians .. shopped around for women, because I feel they hear what we say.  So now here it is March 19th, and I have given my expanders the name of "aliens" (jokingly of course).  If my husband notices me being uncomfortble, I just tell him that the aliens are adjusting themselves.  I know this will be a short lived experience (the aliens), and what a small price to pay, when after all I will be alive and able to go on with my glorious life .. by the way, I am 71, and I still have alot of lving to do!!  I had two sisters that had breast cancer, so I knew (or felt) that the day would come when I would also develop breast cancer. Okay it did happen, and with my great team we will get through this, and I will be booking a cruise very soon.  Take care all of you ladies out there fighting this battle .. we will win out!

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PJ Hamel, Health Guide
3/19/12 5:47pm

Jene, you've definitely got the spirit! Congratulations on being so positive through this tough treatment. You do have a lot of living to do - and it sounds like you're going to enjoy it! Thanks for adding your feedback here - much appreciated. PJH

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PJ Hamel, Health Guide
3/19/12 5:47pm

Jene, you've definitely got the spirit! Congratulations on being so positive through this tough treatment. You do have a lot of living to do - and it sounds like you're going to enjoy it! Thanks for adding your feedback here - much appreciated. PJH

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pamela35601, Community Member
4/23/12 11:28pm

Hello ladies,

I have been reading your posts and want to share my story. I had bilat mastectomy, skin sparing, tissue expanders placement April 3, 2012. One week after my surgery was my first post op visit to the plastic surgeon. I met with one of the nurses who removed the surgical bra and announced that I was healing as I should. She told me to wear sports bras and sent me on my way. The next day, wearing a sports bra, I noticed the bra getting uncomfortably tight..and tighter..and tighter. It got to where I couldn't stand it any more, took the bra off to discover the right cup was very stained with a brownish color. It was too late by this time to call the PS office so I called first thing next morning....was told this was normal. Then the next day I notice the right breast is angry red and blisters are forming, again I call the PS office, talk to a nurse, she acts like this is no big deal. Just take the surgical tape off she says... BUT I'm thinking BUT this tape is holding my breasts together... I have three strips of surgical tape placed vertically down the center of my breast, centered over the area where my nipple used to be. I decide to go ahead and do as I'm told, get the the last strip of tape and hesitate. The sutures appear to be embedded in this last strip of tape and I don't want to screw up my plastic surgery and my new breasts. I call again, get a nicer nurse this time who tells me to get in the shower and with warm soapy water, gently remove this last strip of tape and I'll be OK. I do this and underneath this last strip of tape I discover to my horror that the sutures under the surgical tape have already given way, there's ~ an 1/8 inch gap has been exposed and is now rotting and squishy...then I get to the bottom of my breast which is BLACK !!! I call the nurse back and tell her what I discovered. She tells me I'll be OK...just soak gauze in polysporin and come to the office first thing Monday. So after a very long weekend, I go see the PS who acts like...oh...this is perfectly normal...HUH ?? Just keep doing what you're doing and come back in one week....HUH ??? WHAT??? I did as told until the more I thought it, the madder I got. Why should I have to wait for him to decide when HE wants to deal with this tissue necrosis ? I want this dead tissue GONE NOW!! The more I thought about I came to realize what didn't dawn on me when I first went for my first post op PS appointment. When the nurse took off the surgical bra, I already had breasts....at least B cup breasts...and it is NOW becoming apparent to me that this PS went ahead and pumped up the tissue expanders with enough saline that my new breasts are already B cups, the PS OVERFILLED the tissue expanders immediately at time of tissue expander implant !! What I thought, what I assumed was the tissue expanders were to be implanted as PLACE HOLDERS only and only after the new, delicate tissue covering my new breasts had healed THEN saline injections would start weekly, maybe 50cc's at a time. So he went ahead and filled me up, stretched the sutures beyond their capacity, initiating tissue necrosis. Well, all this PS has done after I called and told his office that I do not want to wait and want this attended to now, he cut out the dead tissue and I now have a large, gaping, triangle shaped HOLE in my new right breast. The left breast has a sickly yellow 1/8 gap down the middle of it as well but not tissue necrosis..... I ask them how will this heal ? Stuff the wound with a wet dry dressing they say....gauze soaked in saline covered with dry gauze..let this dry for 12 hours, then remove the gauze that is now dry which will remove any more dead tissue. I am told this will take weeks to heal... So, after it heals, I'll be left with an awful, huge scar ?? Ohhhh don't worry about that they say...we'll take care of it.... ???? I am so angry that all this has happened. It's bad enough to go through breast cancer, bilateral mastectomy, breast reconstruction, the pain of these tissue expanders, and NOW .... I look like a reject Bride of Frankenstein.... and I find out May 2 if I have to have chemo or not. Traces of cancer cells were found in the sentinal node pathology so I'm thinking, yes, I'll be getting chemo treatments. So, chemo will have to be put on hold until my tissue and HOLE in my breast has healed...?? I'd LOVE to sue this PS for substandard care, negligence, mental trauma, etc. I can't sleep at all, no matter what I take, I can't sleep.... WHY DID THIS HAPPEN ??

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pamela35601, Community Member
4/23/12 11:37pm

I want ladies who are about to undergo their mastectomy with immediate reconstruction TALK TO YOUR PLASTIC SURGEON and understand what is planned.  I was wrong to assume my plastic surgeon was implanting the tissue expanders as a place holder and would fill them s l o w l y  AFTER the new tissue over my new breasts had healed.  Don't assume anything !!  Have an open, detailed discussion with your plastic surgeon about what YOU want and expect.  Times like these before your mastectomy, you have so much thrown at you and many decisions to make.  This is YOUR body, you call the shots.  Please learn from my mistakes.  Good Luck to all you ladies have just been diagnosed and will soon be making these life changing decisions for yourself.  GO SLOW and be in command of your own body.  Love to all !!  Pamela

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Phyllis Johnson, Health Guide
4/24/12 6:22am
Pamela, I am sorry that you have had such a difficult time. Consider getting a second opinion about what to do next to deal with the open wound. I think one possible lesson for people reading your story is that sometimes you have to insist on a face to face appointment when the voice on the other end of the phone is saying all is fine and you know it is not. And your suggestion about asking for detailed information is vital. Thank you for sharing your experience, and I hope your wound heals soon. Reply
pamela35601, Community Member
5/21/12 10:39am

Hello Ladies, update from my breast reconstruction fiasco.  After my last visit to current plastic surgeon, who I no longer trust after he told me that "if" I need chemo I will be find doing so with this huge hole in my breast.  I had my first post op appointment with my medical oncologist who was horrified at the butcher job this PS did and the oncologist said NO absolutely NOT would he start chemotherapy with this huge hole in my chest.  So my PS out and out lied.  I started researching PS in my area who specialize in breast reconstruction and found a doctor who sounds brilliant and has an outstanding reputation.  From the link on his webtsite I sent an email with a brief account of my story.  This was on a Sunday afternoon....he replied that he would see me to assess my problems.  A few days later after I noticed that this hole in my chest had gotten bigger instead of shrinking so I decided to send him another email and attached photos.  He replied again, "hang in there, this is correctable."  I have an appointment with him this Wednesday, 23 May.  I'm not getting my hopes up that he will do anything different than what the previous PS has done but at least I will, now, feel like I am finally in capable hands.  Please ladies...don't trust this all important surgery to just any plastic surgeon !!  If possible seek out a PS who specializes in breast reconstruction and learn from my mistakes.  I'll keep you posted about my 23 May appointment.  Love and blessing to all !!  Pam

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Phyllis Johnson, Health Guide
5/21/12 5:49pm

Pam, I'm glad you were able to find a doctor you have more confidence in.  We will look forward to hearing what you find out.

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Sinaj, Community Member
5/21/12 12:42am

I had bi-lateral mastectomy on March 30th with expanders inserted for reconstruction. The pain for horrific, but I was constantly being told it was normal; after all, I had just gone through major surgery. I tried to suck it up and endure the pain, even though my pain meds were increased, there was no relief. When I had the drains removed, I pointed out to the PS staff that there was discoloration on my right breast. I was told this was normal, just some bruising. A week later, I had a follow-up with the general surgeon who took one look at the discoloration (that had by then spread and caused my skin to feel like an orange peel), and immediately called my PS who readmitted me to the hospital. This was a Monday, and on Thursday I had a second surgery, 19 days after my first surgery, in order to remove the expanders. The PS and pathologist were unable to determine what had caused the discoloration, there were no bacteria cultures (NONE at all, even with the nasal swab), and the intense pain in my left breast appeared to be due to swelling in the fat that was left in place. Because the original surgery included expanders, and the second surgery was to remove the expanders and debridement, my chest now looks hideous. I have to wait at least 6 months, before the surgeons will even "clean up" the way my chest looks, if I opt not to move forward with reconstruction. I was on 3 weeks of daily self-infusions of mega antibiotics using a PICC line, after the expanders were removed. That put me at 6 weeks post-op, and I was not referred to an oncologist until last week...my 7th week post-op. According to the oncologist, I should have started chemo within the first 6 weeks post-op, and the pathology report indicated that chemo should have been started BEFORE any efforts to reconstruct. My surgeons assured me that I did not need chemo, based upon the path. report; and now my oncologist is telling me that what the surgeons told me was not correct. I begin chemo this week. I am devastated by the chain of events...I have no idea how I will handle chemo or the loss of my hair; and I have to return to work the first of June, because I don't have any more leave time that I can take off. I could lose my job; if I have to miss anymore work. I don't know who to trust or who is telling me the truth...I feel as though I have wasted two months of recovery for nothing. I too would love to sue my surgeons! The entire process has been so fragmented; there is no gate-keeper, and I am frustrated in my efforts to gather reports, etc., since medical records seem to "disappear" after they get faxed to my PCP and oncologist.

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pamela35601, Community Member
5/21/12 10:53am

Hello Sinaj     I am so sorry to hear you're having so many problems.  I feel your pain !!    You have every right to ALL of your records.  Go to the your plastic surgeon's office and tell them you would like a release of information form.  Stay there until you fill it out, or they fill it out, and you sign and return it back to them.  They have to comply with this.  Those are YOUR files !!   I did this because I'm seeking a 2nd opinion and wanted the breast reconstruction specialist to have ALL my records showing that the PS filled my tissue expanders to 700cc immediately at time he implanted them.  This caused the tissue to die and had to be debrided resulting in holes in my new breasts.  I asked one of his nurses what is the most amount of saline these certain tissue expanders would hold.  She said 850cc.  So he almost filled them to full capacity while I was on the table right after bi mast !!  You must stand up for your rights and be your own advocate in this matter. 

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Phyllis Johnson, Health Guide
5/21/12 6:09pm

I'm sorry you have had such a difficult time.  Pam is correct.  You have every right to your records.  I always ask for a copy of all labs and other reports when I see each doctor. Keep your own paper copies in a folder that you can take to each new doctor.

I'm surprised that your doctors did not have you see an oncologist earlier in your treatment, but what is done is done.  Ask the oncologist and the hospital if they have a nurse navigator who can coordinate your care from here on out.  I would also recommend that you find out where to go to complain about the care you have received so far.  Most hospitals have a person who represents patients.  You need to be heard.  Bad things can happen even when the surgeon is perfectly competent, but your doctors should be talking to each other and your records need to be forwarded from one office to another in a professional and timely manner.

Chemo will be challenging, but many people can work while on chemo.  Because there are so many different types of chemos, it is hard to say what side effects you might experience.  Take a list of written questions with you to the oncologist at your next appointment and explain your concerns and fears.  I hope the next stage of your treatment goes more smoothly.

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DORISWEST1, Community Member
5/ 2/12 1:18am

WOW im having my surgery May 17, and im havinga bilateral prophilatic mastectomy.... October 13 I was diagnosed with atypical lobular hyperplasia.. And got gentic testing and im BRCA1 positive..That is why im having a mastectomy i have 4 sisters with breast cancer. Im just scared of being put down for 6 hours and the pain after having the fillers inserted. So this blog hope to learn from it.

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Phyllis Johnson, Health Guide
5/ 2/12 4:49am

Doris, many people, including me, find anesthesia scary, but usually there will be someone at the hospital who will explain the details to you at your pre-op appointment.  Ask your doctor if there will be an appointment at the hospital to discuss anesthesia issues.  Also have a frank talk with the doctor about your tolerance for pain and discomfort.  You may decide to get smaller implants or have the fill done more gradually if avoiding pain is a major issue for you.  

As you read the letters that people have written here, you will get some good tips.  Keep in mind that the people who have no problems are not likely to write to a site like this, and there are many people whose surgery will go so smoothly, they won't even think to add to this thread.  Good luck with your surgery.  I hope it all goes well.

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Kelly, Community Member
9/20/12 10:05pm
My surgeon is doing 50cc for 6 times / once a week. Then i heal for 4 weeks and then get the implants. I wonder why your process is so long. Reply
Phyllis Johnson, Health Guide
9/21/12 6:17am

Kelly, I don't know if there is a standard number of weeks, but for every medical procedure, there will be variations depending on the specifics of the patient.  For reconstruction, the plastic surgeon will need to consider the patient's skin elasticity, scar tissue, age, and pain tolerance.  The ultimate size of the reconstructed breasts will also be a factor.  I hope that your procedure is going well.

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Doreen, Community Member
10/20/12 3:57pm

I can't tell you how happy I am to find this site...it seems to be the only place where people are honest.  All the others simply gloss over the entire pain issue.  I had a mastectomy on 9/26 and am so uncomfortable with the expanders, especially at night when the pain gets much worse.  I'm tired of taking pain meds and being depressed.  I haven't even had any fills yet and am not looking forward to even more pain. 

I wish I had found this site before I finalized my decision.  It hurts my heart to hear about all the suffering on this site.  There is way too much that is not said beforehand and this information should be made available to all.  Thanks for listening to me vent as well!

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Michele244, Community Member
10/20/12 9:50pm

Doreen, and others: 

If you scroll up you will see weeks of my posts where I thought I would die with those freaking expanders. They are hell. No way around it! When I hear that someone says you can go back to work in 2 weeks.. I want to strangle them.

 

The words "discomfort" or uncomfortable are an understatement.. Its like wearing a tight underwire bra that never comes off, and your pectorial muscles throb all day. - I know, I lived it! I cried every day until I decided to make some changes and take matters into my own hands.. My PS just said " You'll get better, have a good day".. After 10 weeks I got another Dr. And she saved me!

 

Here's my suggestion.. Use what will help you..

 

- Check and see if you have seromas ( bodies of excess fluid under the expanders) this amplifies the pain sometimes.. a simple ultrasound will find it and your PS should be able to do..

 

- If your having some really bad thoughts, or depression.. ask for something NOW.. you wont be on it forever, but it may help take the edge of.. pain leads to depression.. and quickly!I used Cymbalta for 4 months.. Have been off for 3 mos.- It worked!

 

- Muscle relaxers were my savior and a pain patch.. I was the extreme in pain, and I was eventually sent to a Pain clinic.. Your PS will not prescribe pain medication beyond a temporary period. Get someone to OWN prescribing and treating your pain.. Your insurance covers it.

 

- If Physical therapy is an option, find a place that does it for Breast cancer patients.. If not.. lay on your bed.. or a floor... and stretch your arms very gently... For you, probably not for a month or two... I did it in month 3...

 

I just had my transfer in June -- Silicone gel breasts.. They are not perfect yet, but feel 100% better than the expanders... I was Diagnosed Jan 16, 2012, Surgery 2.21.12 and transfer surgery June 20th... Its now 8 months and its still  not 100%.. But I am getting there and I am not having to have chemo or radiation...

 

Good luck to you.. feel free to write back anytime.. I'll pray for a painless week for you friend!

 

Michelle

 

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Michele244, Community Member
10/20/12 9:50pm

Doreen, and others: 

If you scroll up you will see weeks of my posts where I thought I would die with those freaking expanders. They are hell. No way around it! When I hear that someone says you can go back to work in 2 weeks.. I want to strangle them.

 

The words "discomfort" or uncomfortable are an understatement.. Its like wearing a tight underwire bra that never comes off, and your pectorial muscles throb all day. - I know, I lived it! I cried every day until I decided to make some changes and take matters into my own hands.. My PS just said " You'll get better, have a good day".. After 10 weeks I got another Dr. And she saved me!

 

Here's my suggestion.. Use what will help you..

 

- Check and see if you have seromas ( bodies of excess fluid under the expanders) this amplifies the pain sometimes.. a simple ultrasound will find it and your PS should be able to do..

 

- If your having some really bad thoughts, or depression.. ask for something NOW.. you wont be on it forever, but it may help take the edge of.. pain leads to depression.. and quickly!I used Cymbalta for 4 months.. Have been off for 3 mos.- It worked!

 

- Muscle relaxers were my savior and a pain patch.. I was the extreme in pain, and I was eventually sent to a Pain clinic.. Your PS will not prescribe pain medication beyond a temporary period. Get someone to OWN prescribing and treating your pain.. Your insurance covers it.

 

- If Physical therapy is an option, find a place that does it for Breast cancer patients.. If not.. lay on your bed.. or a floor... and stretch your arms very gently... For you, probably not for a month or two... I did it in month 3...

 

I just had my transfer in June -- Silicone gel breasts.. They are not perfect yet, but feel 100% better than the expanders... I was Diagnosed Jan 16, 2012, Surgery 2.21.12 and transfer surgery June 20th... Its now 8 months and its still  not 100%.. But I am getting there and I am not having to have chemo or radiation...

 

Good luck to you.. feel free to write back anytime.. I'll pray for a painless week for you friend!

 

Michelle

 

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Doreen, Community Member
10/21/12 12:49am

Thanks for writing Michelle.  I have taken anti depressants long before my latest surgery and most days it doesn't help much.  I can get through almost the entire day, but by late evening the pain becomes worse and unbearable by bedtime so I take a pain pill which saves me.  My PS says I should not use the arm on that side because the chest muscle is attached to the arm as well.  I have some muscle relaxers and will try them on a really bad night.

The thing I'm most upset about is it's hard to get honest info about this.  How can you make an informed decision without the facts?

I also won't have to do chemo or radiation and I'm grateful (I did both last time with the lumpectomy I had on the other breast).  I am going to ask for a refill on the pain meds.  I didn't have much of a problem with arm mobility, it was pretty good shortly after the surgery so consider myself fortunate in that regard as well.  It really helps 'talking' to people going through this, so thank you for taking the time to write!  I'm glad to hear you are feeling so much better now, it gives us all hope!

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PJ Hamel, Health Guide
10/21/12 2:54pm

Doreen, I agree - the possible pain of the expander/fill process is often WAY underestimated/under-reported. Discomfort doesn't begin to touch on the pain some women experience; I'm so, so sorry you're having to go through this, and glad you found this site. Perhaps you can try some of the solutions others in this thread have mentioned - best of luck to you as you continue down this path. PJH

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PJ Hamel, Health Guide
10/21/12 2:54pm

Doreen, I agree - the possible pain of the expander/fill process is often WAY underestimated/under-reported. Discomfort doesn't begin to touch on the pain some women experience; I'm so, so sorry you're having to go through this, and glad you found this site. Perhaps you can try some of the solutions others in this thread have mentioned - best of luck to you as you continue down this path. PJH

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PJ Hamel, Health Guide
10/21/12 2:52pm

Michelle, thanks so much for continuing to add your feedback here - your experience is invaluable to women just starting the process or, like Doreen, experiencing so much unexpected pain. We're all glad you got through it, and are feeling better - I hope your journey back to good health continues without any obstacles! Thanks again - PJH

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Michele244, Community Member
10/21/12 7:55pm

Thanks PJ for your continued support! :)

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Michele244, Community Member
10/21/12 7:55pm

Thanks PJ for your continued support! :)Wink

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Michele244, Community Member
10/21/12 7:49pm

Doreen, One more thing..

 

Pain IS worst at night. Dont wait until the night to take a pill.. Stage the pills so that you can go into the night medicated. I sat on the couch with pillows under both arms.. My chest throbbed every single day for 3 months and it by far WAS the worst pain Ive ever had. When the pain medication wasnt working, I got a different one.Then I could deal with the pain better.

 

Dont accept that its just gonna be painful. It is. But there are also ways to medicate to eleviate some pain. Hell, we lost our boobs and have these god awful expanders that hurt like HELL too..GET pain medicine.. not just muscle relaxers!

 

I remember when I was on here every single night, crying.. begging for someone to tell me what I could do to get rid of the pain..  You dont want to think about months down the road, you want to think about now.

 

Dont wait.. refill your meds, ask for a different medication.. For me, I needed a pain patch AND Soma muscle relaxant just to be able to walk normal. And Valium at night to sleep.  I am medication free now, but 3 months ago I was heavily medicated for pain because I needed it.  I still have nerve pain every other day, but its now down to an ibuprofen every other day.. What a difference!

 

You will make it.. I promise! Im here if you need anything! :)

 

Im walking in the Nashville Race for the Cure next week, so Im very excited. 4 months ago I couldnt even get off the couch!

 

Smile

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Doreen, Community Member
11/19/12 12:28am

I had my mastectomy on 9/26 and on 11/12 I was finally able to get through an entire day and night without pain medication...yipee!  Thank you all for your advice, I found some muscle relaxants that really, really helped along with the Vicodin.  I will have a 'fill-up' on 11/21 and hope I can tolerate it.  I still feel somewhat torn about my decision.  I went to a local support group and most women there did not have this amount of discomfort, so obviously it varies from person to person.  Two of them had them (expanders) removed.   One woman there about to have bilateral mastectomies said she was looking forward to it and would simply go home and take some Tylenol...talk about denial! I feel reborn without the pain meds which were contributing to my depression.  This site is a great sounding board and I appreciate the support...thank you!

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PJ Hamel, Health Guide
11/19/12 5:55am

Doreen, thanks so much for sharing your experience here. It really, really helps other women, who are about to undergo this process, to hear from someone who's been there (or is farther along the path). As you say, we all have a different experience; there's no "normal.". I hope your fill goes well, and that the muscle relaxant and Vicodin continue to help. Thankfully, there's light at the end of the tunnel, right? You know that once the implants are finally in, you'll feel better and can put this behind you. Good luck - and thanks again for connecting here. PJH

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PJ Hamel, Health Guide
11/19/12 5:59am

Doreen, thanks so much for sharing your experience here. It really, really helps other women, who are about to undergo this process, to hear from someone who's been there (or is farther along the path). As you say, we all have a different experience; there's no "normal.". I hope your fill goes well, and that the muscle relaxant and Vicodin continue to help. Thankfully, there's light at the end of the tunnel, right? You know that once the implants are finally in, you'll feel better and can put this behind you. Good luck - and thanks again for connecting here. PJH

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Nancy, Community Member
12/30/12 10:41pm

in great pain with the expander,, help please...

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Nancy, Community Member
12/30/12 10:41pm

in great pain with the expander,, help please...

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Nancy, Community Member
12/30/12 10:41pm

in great pain with the expander,, help please...

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Nancy, Community Member
12/30/12 10:41pm

in great pain with the expander,, help please...

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Phyllis Johnson, Health Guide
1/ 5/13 5:46am

Nancy, as  you read back over the letters from other people who have dealt with tissue expanders, you will get some ideas that may help you.  The first step in getting help is to make sure your doctor knows just how much pain you are in.  Pain medication or muscle relaxers may get you through.  You might also choose to ask your doctor to fill your expanders more gradually, or decide that you will be happy with a smaller size than you originally planned for. Some women find that they have pain only for a day or two after a fill; many experience discomfort rather than actual pain.   However, a few, like several of the people who have written in to this thread, report weeks of pain that medication doesn't help.  If you are in the last group, then you need to decide if the reconstruction process is worth the pain to you.  That is a decision that only you can make.  Most women find that once the expanders are out and the actual implants are in, they feel fine.

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Doreen, Community Member
1/ 4/13 8:36pm

Hi Nancy,

I know exactly what you are going through, but if you can endure it do so, if not, then have them removed.  I went through 6 weeks on pain meds and severely depressed.  Finally the pain stopped, but I thought I would never live through it.  In some ways, I think the depression was worse. 

No one can make the decision to endure or not but you.  I will be holding thoughts for a speedy recovery for you.

 

Doreen

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Phyllis Johnson, Health Guide
1/ 5/13 5:58am

Doreen, thanks for sharing your experience.  Depression after cancer and after losing a breast is not unusual.  You are right that the mental anguish can be worse than the physical pain.  Although I haven't had reconstruction, it seems to me as I read women's experiences with it, that many people who haven't been through a mastectomy don't appreciate that reconstruction does not completely replace what has been lost.  The cancer itself has been a huge blow to most women, and then the loss of their natural breast adds insult to injury.  The reconstruction won't have the sensation they used to have, and while the visual appearance of the reconstructed breast may be close to what they lost, it is never exactly the same.  There is a lot to mourn, and I think some time crying and grieving is perfectly normal.  When depression interferes with getting up and doing one's daily tasks, it is time to ask the doctor about medication and/or counseling.  It sounds like you have come through that bad time, Doreen, and we are grateful that you are passing along what you have learned.  

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Michele244, Community Member
1/ 5/13 7:35pm

There is life after a Mastectomy! - I'm proof!

 

Almost 6 months ago I started here in this forum with my nightly pleas for relief on pain, support, anything. I quickly saw that I was not the only person having expander pain and issues. What a relief!  We will all agree the pain from having the expanders is well, some sort of HELL.  In February of this past year feedback from this forum told me "Dont give up, dont let it get to you"..So I decided to take matters into my own hands and find solutions, answers to my questions.

 

Holy cow, did I find out a lot! Smile

 

In the beginning I was READY to call it quits. It took some really great friends to say, "We want our Michelle back" -- I was camping in depression, very angry and sad. I wrote this below; the evening of April 6th. 2 months after my bilateral mastectomy. 'Im sure you can scroll up and see tons of my posts from Feb 2012 and on.I hope this helps you on your journey to find relief. It helped me!

 

* Ask alot of questions

* Check for seromas - pockets of fluid under or around your expanders

* Change meds if they dont work - you KNOW your pain thresholds

* Dont be afraid to ask for anti-depression medicine (It can be for a short time not a lifetime!)

   Afterall you lost your damn breasts!- it gets to us.. emotionally. And pain brings depression!

* If Physical therapy is available - use it! They massage the expanders and your pectorial

   muscles. It helps tremendously! Your PS should be able to recommend someone.

 

Michele2444/ 6/12 8:51pm

So glad I had friends and family to talk sense into me. After reviewing the a pain meds, I was changed from Robaxin to Soma 350 2 times a day and a Transdermal patch Duragesic. - THESE SAVED MY LIFE! Not to mention that I on a weekly basis check in with my surgeon for an ultrasound and needle aspiration if necessary for seromas has reduced my pain and suffering by 60%! - not kidding... Ive had 2 fills..the first one 50% without the new meds and almost DIED from the pain.. and then after the new meds too 100cc's this past Med with only soreness..Also going to Physical therapy,this works TOO!

 

Im not giving up,and neither should anyone else. Pain can suck the life right out of you. Investigate, ask questions, ask WHAT else can we do... thats how I found the seromas, and challenged my pain mgmt clinic to re-evaluate my meds... Its working... SO FAR! -- I'll update you in a week.


Missed ya'll this week and needed to post something positive!


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PJ Hamel, Health Guide
1/ 5/13 8:24pm

Michele, I'm so, SO glad you're doing well! You're not a cancer survivor – you're a CONQUEROR. I really appreciate the time you've taken here to keep us all updated, and especially the fact that you've come back to report what a positive turn things have taken - mainly due to your energy and hard work to force your medical team to find some solutions. Kudos to you for being an empowered patient. I wish you all the best as you go forward. Take care - PJH

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Phyllis Johnson, Health Guide
1/ 6/13 5:54am

Michelle, what wonderful encouragement you have offered women who are having trouble with their expanders--not because you sugar-coated or downplayed the pain you went through, but because you give specific suggestions for how to manage the pain and because you have come back with end of the story.  Thank you.

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Mona, Community Member
1/23/13 12:15am
I was diagnosed with dcis two locations on my right breast. I opted for a bilateral masectomy on 11/23/12 and stared reconstructive surgery right away. I have been going to my ps and now have completed 450 cc on my fills. The reconstructive portion has been the most painful thing that I have ever faced and so glad the portion is almost completed. I am so tired of the pain meds but have found them necessary. I am also really glad that I found this site as it does bring some comfort in knowing that I am not the only one that feels the way I am currently feeling. Can anyone tell me once the implants are placed, what is a typical recovery time? Reply
Mona, Community Member
1/23/13 12:15am
I was diagnosed with dcis two locations on my right breast. I opted for a bilateral masectomy on 11/23/12 and stared reconstructive surgery right away. I have been going to my ps and now have completed 450 cc on my fills. The reconstructive portion has been the most painful thing that I have ever faced and so glad the portion is almost completed. I am so tired of the pain meds but have found them necessary. I am also really glad that I found this site as it does bring some comfort in knowing that I am not the only one that feels the way I am currently feeling. Can anyone tell me once the implants are placed, what is a typical recovery time? Reply
Phyllis Johnson, Health Guide
1/23/13 5:57am

Mona, some people breeze through reconstruction, others have terrible pain, but most are somewhere in the middle with more discomfort than pain.  The same is true of the recovery time after the implants go in.  However, most people I have talked to say the implant part is a breeze after going through the fill process.  We are glad you have found this site helpful as you have gone through cancer and reconstruction.  You have my best wishes for a smooth road ahead.

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PJ Hamel, Health Guide
1/23/13 7:10am

Mona, as Phyllis says, mot women say the removal of the expanders and plcement of the permanent implants is a great relief, pain-wise. I'm sure you'll experience some residual discomfort, but the severe pain should subside quickly. Time heals, it really does; as much as we want to speed things up it's just not possible, so hang in there; we're pulling for you. Take care - PJH

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Michele244, Community Member
1/27/13 12:49am

Mona,

I had Bilat surgery Feb 2012, and my expanders removed in June of 2012 and new silicone implants put in. OMG what a HUGE relief. There is still discomfort because there arent many nerve endings on your chest any more ( they come back ) and they are a little tight.. However with that said, they are 150% better feeling than the brick expanders. I slept on my side with a soft towel in between my breasts so that they wouldnt hurt or touch when I slept sideways.. it works! I also used a squooshy pillow. You will still lay on your back for atleast a month or two.. Took me atleast 3 mos to just be able to touch them, move them.. do the pressing excercises the Dr told me to do..

 

Its taken me about 8 months to have little to no pain left.. I still feel them, and they have a little soreness around the sides. Dont laugh, but I move them, squeeze them and massage them to loosen them up, and eleviate the pain.. -- Hey, it works!  I still have a nother surgery as these arent quite "right" yet, and I opted to wait for the nipple surgery and tattoo'ing until sometime in the future. I just want to enjoy the pain-free time I have now for atleast a little while!

 

Just when you think the pain has taken over your life.. it just gets better!

 

Good luck, hope this helped..

 

Michelle

 

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PJ Hamel, Health Guide
1/27/13 7:36am

Michelle, thank you SO much, as always, for your feedback here. It really helps women going through the process to know and believe that there is, indeed, light at the end of the tunnel; that things DO get better. I hope you continue to heal uneventfully. PJH

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rockermom, Community Member
3/ 7/13 12:03am

I was browsing Google as I always do.. ran into you lovely ladies here.

I'm having a bi-lateral mastectomy with expanders in a couple weeks. I'm going a little bigger from my b+/c- but not too much.
These posts are scary, sure. BUT.. when I was going to have my stereotactic biopsy I googled how that was and 99% of the women said it was a horrible, terrifying and painful experience. I almost fell asleep during mine.. so don't be scared and think that you are going to have the same experience. Sure it won't be a walk in the park.. but be positive! You're going to be fine in the end. I will be too! Smile

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PJ Hamel, Health Guide
3/ 7/13 5:27am

A positive attitude can really help - hold onto it! Women have varying levels of pain-resistance, it's true; thankfully, it sounds like yours is high. Best of luck as you go through this procedure; I hope it goes well, and you're pleased with the results. And we're so glad you found us! Please come back here anytime; we're here for you. Take care – PJH 

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rockermom, Community Member
3/ 7/13 10:39am

Thank you PJ, I am super positive!
I think my pain threshold might be high, I gave birth to a 10 lb basketball 15 yrs ago.. but I won't know about this until it happens. I will do my best to heal properly. 

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Phyllis Johnson, Health Guide
3/ 7/13 5:46am

We are so glad you wrote in with your biopsy experience and your confidence that the mastectomy/reconstruction will go well too.  Question threads like this are a great way to learn about other people's experiences and to pick up some tips for managing problems.  However, there is a natural tendency for people to write in IF they have a problem, so the reports are skewed to what can go wrong.  The thousands of women who go through these procedures with barely a twinge of pain aren't proportionately represented in a thread like this, so sometimes reading ahead can be scary.  For the woman who did have a problem, it can be comforting for her to find out that she wasn't the only one.  You will be fine, and I hope that you are in the majority of women who experience some discomfort and minor issues, but no major ones.

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rockermom, Community Member
3/ 7/13 10:57am

Thank you Phyllis. I am not discounting the fact that many women do have pain, and I might be one of them.
I know how it can be Googling and reading, SCARY!
I just like to be a little ray of sunshine for the info searchers Smile


I had some questions for anyone reading and I'm not sure this is the best place but here goes.

I am afraid of how long it will take me to heal. Like Sandra above, I am in the beauty business and I do hair extensions exclusively. If I don't work, there is no money although I have been saving as much as possible. I assumed I would be out of work for at least 6 weeks but after reading about experiences it seems like it might be more.
I make my own schedule so I can do part-time. 
I'm just wondering if using my fingers and hands in repetitive motions for hours will be possible. I don't really need to raise my arms up that high. I sort of have a vision of me having T-Rex arms but I know the pectorals do a lot more than we realize.
I'm assuming that after I have the expanders filled I might want a day or two off. I'm not sure if I'm having chemo yet so that's another story.

I'm a single mom with a 15 yr old son, 3 cats and a dog.
When will I be able to walk the dog? I have read about women tying the leash to their waist, but he can get rambunctious and drag me. Will I be able to bend over and put him on his lead for the backyard to do his business?
My son will help but he also has to go to school and things. 

 

You ladies seem good, I've tried posting on other message boards and got barely any replies. Thank you so much for being here.

 


 

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Phyllis Johnson, Health Guide
3/ 7/13 12:01pm

If you don't need to lift your arms high, I think you might be able to go back to work part-time in three to four weeks.  The idea of scheduling a day or two off after an expander fill sounds like a good idea to me.  I did not have reconstruction, but the main motions that were difficult for me were lifting my arm over my head and crossing it over my body for putting on seat belts, etc.  My doctor told me three weeks recovery, but it was really more like six before I had full range of motion back.  I'm sure he wouldn't have told me three weeks if some ladies don't recover that quickly.  I don't think the repetitive motion will be an issue, but your overall energy may take a while to return.  If you could start back slowly, you could better gauge what will work for you.  As far as the dog, maybe now is a good time to delegate dog walking to your son for a while until your incision is fully healed.  Bending over shouldn't be an issue.  Since your income depends on your hands and arms, asking for a referral to an occupational or physical therapist would be a good idea.  They would have some tips and maybe some gadgets that would make it easier for you to do your work.

Thank you for your kind words.  We try to be as prompt and specific as possible because we are cancer survivors who have stood where you are.

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rockermom, Community Member
3/ 7/13 1:11pm

Phyllis, thank you SO much! Now I'm finally getting somewhere. 
I will definitely be looking into PT, thanks for the suggestion.
 

I can sit while I work, I have a special rolling stool for hair people so it's not as tiring as it used to be. My clients are also VERY understanding about this so hopefully I can get back part-time in a month or so. 
The dog, that is a situation I will work on.
I will grill my surgeon again on Monday about possible recovery times and complications. 

 

Thanks again, I will come back and post how everything goes.  

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Phyllis Johnson, Health Guide
3/ 8/13 6:16am

We will look forward to getting a full report when you feel up to it.  I'm sure you will have some good tips on getting back to work for other people like yourself whose work involves using their hands and arms.  Best wishes for a speedy recovery.

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PJ Hamel, Health Guide
3/ 7/13 12:30pm

It's really hard to say how fast you'll heal; some women are at either end of that "6 week" bell curve. I had single mastectomy with body-tissue reconstruction, so it was quite complicated surgery; and I could have been back at work in about 2 1/2 weeks. Another woman I know had double mastectomy with body-tissue reconstruction, and really struggled for months... so you just don't know till you do it, though past experiences with surgery (if any) might guide you. As for the rambunctious dog - have you tried one of those long rectractable leads? They can take the "jerk" out of times when the dog really pulls, as you're able to let the lead out a bit... Best of luck, and let us know how it goes, OK? PJH

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rockermom, Community Member
3/ 7/13 1:17pm

Thanks PJ, I'm going to expect 6 weeks downtime. I understand it might be longer.
The only surgeries I've had are wisdom teeth at 18 (46 now) and tonsilectomy at 7.. I came out of those just fine. I lived through a major episiotomy also.

 

I suppose I will find out soon enough how it is all going to happen. I will remain positive and optimistic that I will come through OK. I'm pretty tough, all my friends know that I'm a fighter and encourage me.

 

Thank you so very much for your input, you are very helpful and I am grateful :) 

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PJ Hamel, Health Guide
3/ 7/13 4:42pm

You go, girl! I think you'll be just fine. I was 47 when I was diagnosed, and my son was 15, too, like yours. Now it's 12 years later, and things are just fine. See what you have to look forward to?! Keep smiling... PJH

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By Maggie, Community Member— Last Modified: 06/19/14, First Published: 04/05/09