Saturday, March 14, 2009 ELB asks

Q: how long is recovery after a bilateral mastectomy

This past week I was diagnosed with LCIS. Alone I know that it wouldn't be so scarey, but my family history is awful. My great grandmother died in her 50's, my grandmother and her sister died at 38, my mother died at 50, and her younger sister died at 39 - all of breast cancer. My brother was diagnosed at 38 with stage II and my mom's oldest sister was diagnosed at around 60. Only my brother and aunt have survived and they are both BRCA 2.

Given that I now have LCIS I am wanting to proceed with a bialteral mastectomy with reconstruction and can't seem to get a clear picture anywhere (and I know it will be general) of how long the recovery period is from the mastectomy. I'll cross the reconstruction bridge when I get to it.

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Answers (7)

Phyllis Johnson, Health Guide

3/15/09 8:48am

Probably one reason you are having trouble getting the recovery period pinned down is that people really do vary in their recovery time. One factor that will affect your recovery time will be how many (if any) lymph nodes are removed. Often with a bilateral, the surgeon takes lymph nodes on the side with cancer, but not on the non-cancerous side. My surgeon told me that I'd be able to go back to work at three weeks, but I didn't have full range of motion for about six weeks. And there are stages of recovery. It will be about a week before most doctors will want you to drive, more if you have a stick shift. The driving issue is affected by possible lingering effects of anesthesia and whether you are taking pain killers.

Given your family history, I can understand how frightening this all is. Do keep in mind the improvement in cancer treatment since your mother and grandmother's time.

Connie Jackley

3/20/09 7:09pm

Sorry for your diagnosis and your family history. I have a horrific history also, which was my reason for chosing to do a double mastectomy even though the cancer was only in my left breast. I had my surgery 3/9/09 and at the time of breast removals, I chose to have "expanders" put in right then and there. I just thought it would be so much easier to go ahead with the reconstruction NOW versus wait cause once I healed I would not want to start all over again. I know this, as I have had several cancers removed (cancer, pancreas). I was only in the hospital for 2 1/2 days, which was wonderful, and went home with 4 drains which had to be measured and emptied several times a day. Yes, they were a pain - it was rather painful, discomfort, but on my first visit to the plastic surgeon I found there was an extra amount of fluid, which he removed. On removing that and the drains, I am now allot more comfortable BUT still feel as though a big rubber band is on my chest. I know it will be worth it though - I will have two breasts that look more or less the same and I will go through the inflation process for both at once - implants supposed to be put in after my goal is reached which they tell me is a very short process and allot less painful. I am just not allowed to drive and do not have full range of motion - but I am only short of two weeks out of surgery. I am not doing my own hair cause of putting arms above the head, not doing any housework, etc. My surgeon tells me for at least another week with full restrictions, then gradual while expanders are inflated. It is going to be worth it in the end, so I am perservering, but it is very hard to be so idle for me. Like the other lady said, recovery is different for everyone, but it is hard to keep me down. I just do not want to dislodge the expanders and then have to go back in for repair!!!! Good luck with whatever decision you make. It is so hard for all of us (I am doing no treatments - my nodes and blood vessels were all clear)

Connie J

ELB

11/18/09 5:48pm

Thank you for your reply. I did end up getting the mastectomy done on May 7. At that time my doc also put in expanders and everything was great until 2 weeks later. At that time I was re-admitted to the hospital with a staph infection on the left side. After several days of trying to fight it with antibiotics the decision was made to go in and remove the expander on the left side. I was sent home on IV antibiotics a few days later. I've had one more surgery since then to put the expander back in and am looking to finish my reconstruction sometime in December or January. I can't wait till it's all over.

Thanks again.

I hope all is well with you and you remain cancer-free.

Peace,

Elaine

dmd2420

1/ 4/10 2:36am

I just had surgery...bilateral mastectomy on the 21st of December....pain is tolerable...had expanders put in also....no problems yet...been 2 weeks...still pain though...when does it end? My drains were out after a week....I have to go back to work one week from now...worried if I gave myself enough time?

How are you? Did the antibiotics take care of your infection? Are you almost thru this terrible disease? I hope you are...and every other woman that has to deal with this aweful dreadful upset in their lives....

You are my kindred spirit....we will move past this....

Denise

KC7720

1/ 4/10 1:08pm

I too had bilateral on Dec 21st. My pain feels more like pressure, but it improved after about a week. I still have the drains in and they are the largest irritant and annoyance, I am 2 weeks today from surgery. They used some artificial skin on the reconstruction of my right breast and it is not healing well, so I have to go back to surgery tomorrow and have it removed. Which means they open the original sutures, remove the expander, and then remove the artificial skin, replace the expander. Closing all the skin again and the original surgery site, as well as put in a new drain, with a new exit site, as my skin has gotten very sore at the current site. Out-patient surgery, so I should be home tomorrow afternoon. The Dr removed some of the saline in the right expander today to reduce the pressure on the skin after the procedure tomorrow. I'm sure that is what the eventual fills will feel like once we begin the expansion. It was a great deal of pressure on the muscles, similar to how it felt in the hospital.

Is anyone having a great deal of muscle spasms? I have them on both sides, consistently throughout the day, and worse at night. I am trying a different muscle relaxer medicine and see if it helps.

ELB

1/ 4/10 11:04pm

The most trouble I had with muscle spasms was if I tried to exercise the pec muscles. Good grief, if I hadn't known better I would have thought I was having a heart attack! It was awful. What did work for me was a heating pad or climbing into a hot tub. My massage therapist (very dear friend) gave me a exercise to help release the pec from the chest wall a bit. That helped as well.

I'm sorry that you are having to go back in. It's scary - I do get that.

Hopefully I'll have my final surgery soon. I want this to be over so that I don't constantly have to be in the middle of this..... recovery.... this mess. I'm so over it. I want my life back.

I have a lot to be grateful for though too. I'm cancer-free. My brother was diagnosed (for the second time in four years) a week after I was with Stage IV breast cancer. He's doing okay - but he's living with it - it's not gone.

Peace to you.

Elaine

J.M.E

6/13/10 11:32pm

Hi, I am so sorry you are having such troubles! One thing I can comment on are the muscle spasms. I am taking Neurontin 600mg 4 times a day. Neurontin is nerve pain medication. I have not felt needle pains or "electric wiggles" since. I also take Flexirel "a mild muscle spasm help" I use it as needed. also very helpful for me. I started the med's while in the hospital for pain management after bi-lateral Mastectomy with some node removal. I am 45 yrs old. I had Inflammatory Breast Cancer. I have Radiation next. My biggest challenge now is Lymphodema, It surprised me, I didn't expect it till a few years from now! watch for that okay?. I opted to skip reconstruction. My body rejected the Port, pic line and J.P tubes. foreign objects. Unless you are really into showing your cleavage or your significant other really wants them, You could opt out or wait a while for implants. The body can only take so much at one time. Praying you well! J.M.E:)

ELB

1/ 4/10 10:58pm

I'm doing very well. We've had no other issues since the infection and the new expander is okay. Although the tissue around it never really did settle down. It encapsulated and has remained very large and very high up on the chest. Gives me a terrible lop-sided look. I hate it! It determines what clothes I wear because I can't stand the unevenness of it.

I go back to see my surgeon the first week of February and we'll schedule the final and biggest surgery. This one freaks me out just bit. He said depending on which procedure he does (either a muscle-sparing TRAM or a DIEP) the surgery could run from 6 - 17 hours long. That's such a long time to be under.... Six day in the hospital and eight weeks of recovery and drains from both the chest and the abdomen. Yea!

My biggest fear is infection again.

I have my faith though and my God has gotten me this far. I don't believe He'll drop me now.

I'm glad things are going well for you.

Peace

Elaine

PJ Hamel, Health Guide

1/ 5/10 6:37am

Hi - Best of luck with your upcoming surgery. FYI, I had a TRAM - about 9 hours of surgery, in the hospital 6 days, but was able to go back to work after 2 1/2 weeks. Yeah, being under anesthesia that long does make you feel pretty woozy and weak, but it passes - and I have to say the result, for me, has been delightful... I hope everything turns out well for you. PJH

Shawna

6/ 4/10 8:52pm

Elaine,

Hope your recovery has gone well. By this post date I am assuming that you should be doing much better. Your post really touched me because you mentioned your faith!! I know that is what has gotten me through this last month since being diagnosed and having the first surgery. I hope your faith continues to grow!!

Shawna

ELB

6/ 4/10 11:01pm

It has had it's ups and downs for sure. I had another surgery on April 20th to straighten things out and ended up with another infection. Had to have another surgery on May 10th. My surgeon at that time removed everything. I will have my TRAM or DIEP the last two weeks of August or the first two weeks of September. The one big thing that did concern me, and I voiced this to my surgeon, was that with all these relatively minor surgeries I've had the infections. What was to prevent that from happening with the next surgery which will be longer and much more complex. He assured me that everything should go fine. The issue has been that for whatever reason, my body doesn't handle the foreign material well. He told me that with the next procedure there won't be anything thing foreign. If an infection should develop, then they treat it. My surgeon is awesome and I really do trust him.

My faith means everything to me. If I didn't know, for sure and without doubt that my God is watching over me, then there would be no point in being here. My brother has stage IV breast cancer - he was diagnosed a week after I was. I believe, we both do, that he is in for the fight of his life, but he will come through this. It's the God-thing again.

Peace to you.

Elaine

J.M.E

6/13/10 11:53pm

Hi Elaine, I am A God believer too:) You are doing great in that you are following with treatment. If God wanted something else for you, well, He would show you. I too had some hiccups in my treatment. My body rejected Pic, Port, and J.p. tubes. This helped me say no to implants! I had double Mastectomy and some node removal 5/27/10 MY Surgeon is great too. For most of my questions though, I find it best to ask My Primary or My Oncologist (both Women). My Surgeon is used to unconcious people, but He tries! God is so with You and your Brother. We have both learned that no matter what happens to our bodies on this earth, Our Soul's our with our God. This is our comfort. This is our promise! OH death where IS your sting?...This takes me from day to day. It will take you through as well. (Tomorrow has trouble of it's own) I look no further unless I am prompted to. December till now,as hard as it's been, Has been but a blink for me, Radiation is next. I have already experienced "God Stops" during my treatment. My Doctor cancelled my second round of chemo and even though I was in third stage of Inflammatory Breast cancer, nothing had mastesized! Highly unusual. I suspect lofty prayer's were involved! t

Those who love God, God answers. Amen?:) I pray that Our Great Physician does your next surgery. J.M.E

Linda

6/17/11 6:14pm

Elaine

I may have to have my tissue expander removed on the right breast. Is it a big deal? My right breast is red and inflamed. I had surgery exactly one month ago and was in the hospital for 6 days last week due to high CRP (tells inflammation). I was on antibiotics the entire 6 days, and am now on oral antibiotics for 2 more weeks. I really don't want to make this longer than necessary and having the expander removed and then replaced, then surgery again to have the implants put in concerns me a lot. Thanks, Linda

Phyllis Johnson, Health Guide

6/17/11 6:43pm

Linda, usually removing a tissue expander is a simple procedure. Since you have had some complications with your surgery, your own surgeon is the best person to predict your next steps. Sometimes the nurses are better at explaining what to expect from a surgery because they are most involved with the actual post-operative care. One of the most important questions to ask your surgeon at this point is how often problems occur with a second implant procedure if there was a problem with the first one. Then you can make a decision about whether you want to proceed.

Joy

8/ 7/11 8:20pm

Elaine, if you don't mind me asking - how old are you? I'm 58, and stories like yours (bless your heart) have helped convince me that I do not need reconstruction. I know they make breast forms that fit into special bras and camisoles (I just ordered some for when I have my mastectomy). Check out this website I found in case things don't work out the way you are wanting them to. www.breastfree.org

Praying for you to make the right decisions for your own situation. BTW, I'm a missionary wife. God bless!

Joy Kelley

SHIRL

11/17/09 7:29pm

I HAD BILATERAL MASTECTOMY 4 DAYS AGO. OPERATED ON NOV 13 HOME NOV NOV 15. SO FAR SO GOOD. VERY LITTLE PAIN. I AM HAVING DRAINS REMOVED TOMORROW, SO IT DOES MOVE ALONG VERY FAST.

PJ Hamel, Health Guide

11/17/09 9:40pm

Good for you, Shirl! Hope things continue to go uneventfully. PJH

J.M.E

6/13/10 11:12pm

Hi, I am recovering at this moment from double mastectomy with some lymphnode removal. My surgery was 5/27/10. I have been hearing around the specialized clinic I go to , that healing is very individualized. You must listen to your body and not push it past it's limit. I had a great Surgeon, but asking him questions was very unfruitful and frustrating because He is best at dealing with people who are unconcious. He doesn't seem to know about Lymphodemia after surgery or the treatment of it. Some people get it years after surgery. I got it 2 weeks after. My next step is My Primary or My Oncologist. The swelling is actually more painful than the surgery. Just keep in touch with a Doctor any time you are not sure or nervous. I had nerve pain(needly feelings) My Primary Doctor prescribed 600 mg of Neaurontin. It works GREAT for me. 800 can also be prescribed. sleepy the first week but then I was able to get through that part. Rest is good anyway! I take each day and rest when My body says rest. Flexirel is a good 'as needed' med for muscle spasms(Tightness) You will heal much faster and better with rest. FYI. My Mother had regular breast cancer 30 years ago. She was diagnosed 5/28/09 with secondary cancers due to Radiation. She passed at 73 on July 29th 2009. My diagnosis was 11/27/09 and it was called Inflammatory Breast Cancer stage 3. It , Thanks be to God, had not Mastetized! I Hope the Info is helpful. Prayer is My long term goal. My cancer has been completely removed, Radiation is next, but they say Lymphodemia is life long. Not on My watch! Heal Well...JME:)

Cindy

2/ 8/11 12:01pm

I had a lumpectomy in 2009 and then we found a new tumor far away from the first one on the left breast. i had a bilateral on Feb 3rd with expanders put in place. I was in the hospital overnight and went home with 5 drains. 5 days out 3 of them are almost empty and the other 2 are still putting out about 50 ml a day. I suspect those 2 will remain in place another week. I see the Plastic surgeon tomorrow. I still tire easily. My surgery was 7 hrs long. I have very little pain. I haven't taken anything for pain except Soma (muscle relaxer/pain) since the day after surgery. I seem to have full range of motion in my arms but am being very careful with using them too much. I had lymphodema in my arm after the first surgery but it seems to be going away the last couple of days. I wonder if it is because the Dr took out a lot of scar tissue and that had been interrupting the flow. I'm curious to get her opinion on that. I have some itching. Very few tingles and no pressure from the expanders. I feel very lucky so far. I just still tire easily when I am up out of the recliner.In the last year I have lost 101 lbs and have been doing zumba every day. I am anxious to get back to that. I will be 59 in July. No breast cancer in my family except my Dad's sister and I think hers was different than mine. it was 40 years ago and she was in her late 30's when she got it. They didn't test for Braca back then. I'm betting she was positive. I tested negative. Nothing at all on my Mom's side of the family. I will do chemo after the surgery heals but no radiation this time.

PJ Hamel, Health Guide

2/ 8/11 5:20pm

Cindy, I hope you continue to have an uneventful recovery, right through the fill process and final implants. And - keep up the Zumba! That weight loss is GREAT for you - and congratulations, I'm sure it was a challenge. Take care- PJH

Helen Dixon

2/13/11 2:39am

Hello Sister: First of all let me say my heart goes out to you and your love ones. I can't imagine what you have had to endure. Wednesday Feb.9th 2011 yes just 3 days 12 hours 21 minutes 9 seconds ago I had my tissue expanders removed and new implants (new breast) installed. i feel really great right now. I have some pain but is has al been worth it. If I had it to over I would not change a thing. This whole life altering experience has really made me realize that no matter how young or old you are you are, you at this moment can make your self and those around you happy. How? By doing what makes you happy.

I love to read. I am going to retire in 22months. I am going to buy a mobile home in a couple of months.

I was scared to death when I was told your bi-opisy came back Cancerous it was like WHO ARE YOU TALKING TO I KNOW YOU ARE NOT TALKING TO ME. I was born and raised in the 50's (FIFTIES) ok back in the 50's by the way I am 60 39,900 days old, 60 doesn't sound so bad does it. Most people who guess my age guess that I am 40 years young. At any rate born in the 50's and being told you have cancer. YOU WERE GOING TO DIE. CANCER WAS A WORD NOT SPOKEN VERY OFTEN. It was horrible,it was frighting. And is still is today, but today with the advancement in medicine and all the wonderful things our generous Actors and Actresses, and the people who give and the Doctors and Nurses who give hour and hours of care, with all this we are being cured and saved. SHOUT OUT TO MY BREAST SURGEON AND PLASTIC SURGEON.

How are you today ELB.

I am so thankful.

God Bless You

Phyllis Johnson, Health Guide

2/13/11 9:33am

I'm so glad that the implant/expander exchange went well for you. I'm just a little older than you and understand what you mean about the change in attitude about what cancer means. It's wonderful that you are planning for a new home and retirement. Thank you for sharing your experience. I'm sure it will encourage other people.

Traci

12/18/11 4:18pm

I had a bilateral mastectomy in 09..with reconstructive surgery following muscle and skin brought around from my back..in Jan 10 I got mrsa had to have expanders taken out and was very sick almost died..6 months later started reconstructive surgery again..dec 10 had implants put in..did fine but a year later dec 11 I still hurt and the implants which are gell feel so heavy...has anyone ever went back and just had their implants taken out and let them fix the muscle and skin that was brought around and fix that as your boobs?...or is that possible?

Phyllis Johnson, Health Guide

12/18/11 7:35pm

Yes, sometimes people do have so much trouble with implants that they eventually have them taken out. I'm sorry that you have had so much trouble. You might want to consult with a new plastic surgeon about a good plan going forward. Your first surgeon may have been perfectly competent. Sometimes problems occur no matter how skilled the surgeon is. However, at this point, a new doctor may have some ideas about a new approach for you.

Traci

12/18/11 8:12pm

Thanks.. they look great..dont get me wrong but they feel so heavy..and at times my ribs hurt..I am 48 now was 46 when I had the bilateral mastectomy..Im not sure as to what I will do I do know I have alot of "fat" under my arms that was left and I hate it!..I feel so unnatural when my arms are down because I feel like I stand like a boxer.My surgeon was awesome...and I was a big busted lady that had a reduction and that how my cancer was detected..and by no means did I want to be that big again..but I swear I feel like I am...so I didnt know what the results of having the implants taking out would be like..especially with me having the muscle and fat brought around on me..I actually liked the look I had before my implants but the doctor felt I needed implant

PJ Hamel, Health Guide

12/18/11 10:04pm

Traci, it sounds like you need a second opinion from a different surgeon. Just because your current surgeon felt you needed to have the implants, doesn't mean someone else won't feel differently, and will be more willing to work with you to achieve the look you want. I've had several friends that have gone back for multiple surgeries until they were satisfied; yeah, it's a pain, but in the long run, so worth it... So keep pursuing this by getting a seconed opinion, OK? Take care - PJH

Dora

3/ 6/12 7:51pm

Start an alkaline diet, juicing GREENS, no meat, no sugar, no fruit, no caffiene, no teas, no algae, spirulina, ...drink wheat grass start slow and increase. eat lots of avacodos, 3-4 oz of healthy oils, flax, borage, olive(must for vit K), hemp, grapeseed. check out the PH Miracle by Dr. Robert Young,..cancer is cureable and sometime withing 6 weeks when you remove all acid causing foods in the body.

start on his program, using 4 salts, liquid spray salts, and alka blast, ..add chlorophyll to your water(alkaline water), drink litres of water a day.

keep positive, pray, trust in yourhealing process...you will beat this. it is cureable.

peace xo

PJ Hamel, Health Guide

3/ 6/12 8:14pm

Thanks for your feedback here, Dora. While some may choose alternative methods to deal with cancer, I'd personally stick to the tried-and-true, scientifically proven, data-driven treatments. PJH

Q: how long is recovery after a bilateral mastectomy

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