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Sunday, November 09, 2008 AZ, Community Member, asks

Q: skin-sparing mastectomy & Immediate reconstruction with expander

Oct. 6, I had a lumpectomy for IDC tumor size 4mm/ nodes 2 neg., but pathology report came back with DCIS at 6 o'clock positive margins.

 

Oct. 22, re-excision DCIS and still no clear margins.

 

 I decided to move onto plan "B"

 

On Dec.1st, I am schedule for a bilateral (because of very dense breast and family history) skin-sparing mastectomy with immediate expanders put in.

 

I would love to hear if you or someone you know has gone through skin-sparing with immediate expanders.  What should I expect when I wake up from surgery and recovery time, etc.? 

 

Thank you...any info will be greatly appreciated.

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Answers (8)
PJ Hamel, Health Guide
11/ 9/08 3:32pm

Hi - I had a skin-sparing mastectomy with a tram-flap reconstruction. So I went through part of what you'll experience. Angi, our "expander" expert, will probably chime in here, too.

 

My surgery was very long, because of the reconstruction. I imagine yours will be shorter, although having a bilateral, that'll take time. The rule of thumb is, however many hours you're under the general anesthesia, expect to feel kind of "off kilter" for that many days: e.g., under anesthesia for 5 hours, feeling not-so-good for 5 days.

 

When you wake up, you'll be tightly swathed in bandages stretching all the way around your chest. However, you may find that they've left the bandages loose around the front; this is so they can check things easily. You'll probably be shocked the first time you look at your chest and see 1) no breasts, and 2) probably pretty raw looking incisions. Take a deep breath, and just look; the first time is the hardest. You quickly get used to it.

 

You'll be on IV pain meds, I'd think, for 24 hours or so. Then oral pain meds after that. Persnoally, I didn't find the pain to be too bothersome after the first day or so. Be sure you tell them as soon as you feel the slightest bit of pain; you don't want to let it get too established before you medicate it.

 

Not sure how long you'll be in the hospital. I was in 6 days, due to length of surgery, plus they had to go back in and construct my nipple a few days after the first surgery. You may be in less, since with the expanders rather than your body tissue, there's less to heal.

 

I'm going to hand off to Angi now. Angi, can you talk about expanders post-surgery? Thanks.

 

Best of luck - one foot in front of the other. You'll be OK - stay in touch, we can help you through this. PJH

 

Reply
Angi, Community Member
11/10/08 9:58am

Hi!  Sorry I didn't get to you sooner, but I was away from the computer all day across town at a birthday party.

 

In July of 2007 I wanted to attempt reconstruction again on my R breast (my first failed as you will read later), while opting to have my L breast removed (due to too many scares with lumpy breast tissue.)  I wanted immediate reconstruction to be done all at the same time.

 

My R breast, went through a modified radical mastectomy that took all my skin, some chest wall and my nipple - I was not offered an alternate surgery or approach.  When I chose to remove my L side I was offered a choice as what I wanted to do with my breast.  I was told that by removing all the tissue, the nipple and the majority of the skin, I would lower any remaining chances of cancer in that breast.  The risks between skin sparring and/or keeping your nipple are all very low, but I figured he might as well just take it all, so they at least matched in every aspect. 

 

What I can tell you of the expander process is that it is fairly easy.  You can chose to do it following your mastectomy (immediate reconstruction) or they may ask you to wait a few months to heal before trying depending on your individual circumstances (chemo, radiation, etc.) my first attempt I was told I had to wait cause I did chemo and stuff.  But each cancer, treatment, procedure, and experience is different.  Once you are ready, your doctor will place silicone expanders beneath your muscle that have this small valve that includes a very small piece of metal in it.  During the surgery he will fill them just a bit with saline, but not much cause he doesn't want you to feel too uncomfortable with them.  From what I understand they are also folded when they are placed - it all depends on if he opens you all the way up or if he does it through a small incision.  When you wake up you will have drain tubes coming out of your sides and they will stay there till less than 30cc's a day is draining of this pinkish fluid.  The drains are a pain - makes it very difficult to be comfortable with them and you have to watch them carefully cause since they drain, they can also backflow and cause infection to travel back into the body....so watch them and make sure the suction is working correctly.  The drains are usually removed within the first few days to 2 weeks. 

Approximately 6 weeks following your initial surgery you will go in for your first fill.  Even though it is a rather large needle that goes through your muscle into the valve, the pain is very minimal, however I do recommend taking a Motrin or something prior to going just to ease the discomfort you will be filling after the fill.  Your doctor will have a set amount he'll want to fill, or he'll stop whenever you feel "tight".  The tightness will last the first few days, but will be gone before it's time for your next fill.  Depending on how large you want to be and how much saline you can tolerate each fill, you should generally be done in about 4 weeks then it will be time to swap them out for your implants.

 

Things you'll want to do are:

-Take it easy following any surgery - don't lift or carry anything over 5 lbs. Don't do moderate arm exercizes.  You can use yoga bands to help gain mobility, but no lifting weights, etc. for the first few weeks.

-Gently massage your breasts to stimulate circulation/blood supply.  This will help keep your breasts soft and prevent scar tissue from forming.

-Your doctor may also want you to massage or push your expanders into a certain spot.  It's important for the right area to stretch out and you don't want your implants too in, out, up or down.  If your expanders shift (which can and does happen) your doctor can make "pockets" for your implants to go in so they are kept in place.

-Keep the incisions clean - use antibacterial soap and/or saline several times  a day to clean the area.  Put Bacitracin ointment on the incision and cover with gauze and surgical tape.  When possible do let the incision go unbandaged so it can breathe. 

-If the incision starts to bruise or turns black call or see you doctor right away.  When mine failed it all started with the incision turning black which lead to dying tissue and a hematoma (large bruise).

 

Should everything go as planned you should go from expanders to implants within 3 months.  Then you wait another 3 months or more to heal before doing the surgery/tattoo for the nipples/aerolas - unless you are keeping yours.

 

Providing that you keep the areas clean and provide yourself with time to heal, everything should go according to plan.  It's really hard to say what or why one might fail - afterall it is a foreign object being placed within your body.  My 2 attempts that failed were only in the beginning.  I've had a total of 7 breast surgeries and only had problems on 2 occasions - one on each breast.  This last attempt has been put on hold cause my plastic surgeon found suspicous scar tissue during surgery that tested positive for cancer.  So I've had cancer twice within 3 years - and my current expanders are just sitting in me waiting to be filled while I heal from my radiation burn and find out if I'm doing chemo or not.

 

Oh, and the most important thing of it all is to make sure you find a good plastic surgeon that isn't just certified but one that you feel comfortable with and isn't in a rush to finish a project, but rather take his time to make sure you are happy and that they look right.  To some doctors breast surgery is an art, so don't settle for less than you deserve - OK!

I love my plastic surgeon because he literally saved my life by catching that cancer recurrence when he did!

 

Good luck and keep in touch here!  I hope I was able to help you!

Angi

Reply
saadia, Community Member
3/18/10 4:00pm

Hi Angi

 

My mother -in-law had mastectomy. It went fine but both of her LD and TRAM flap failed. Now its an open wound. She has her lymh nodes positive so she was advsed to have radiology, but since her wound is open, she cannot have radiotherapy. Her oncologist has taken the risk of continuing her chemotherapy and harmonal theraphy with a open wound. Now she is going throiht 6th chemo and hot days are very near, please sombody advise me what can be done to cover her wound. She is 67 and fragile, she can't have further long surgery. We are all concerned about what to do next since we live in Pakistan where awareness about options are very limited. But we can move her to some other country for further treatment. Please help we are desparate for help and advice

 

Thanks

saadia zeeshan

 

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Elli, Community Member
3/25/11 1:36pm

my flap reconstruction failed and I had an open wound for 5 days as they watched for narcrosis (sp)  It was tough going and I was on chemo for another cancer I have.  So take heart, I am fine.  6th day, my dr stretched the skin and sewed my wound closed.  I hope you find that they can close hers too.  there must be a reason to keep it open as mine had a reason. 

 

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steakprincess, Community Member
11/16/08 9:00pm

I had bilateral mastectomy, tissue sparing, with expanders all at the same time and this is what I dealt with.

 

The scars, although approximately 5" long, were not that bad looking and they were glued together.  

 

The plastic surgeon started the expansion in the operating room and put in approximately 400ccs to start in 650cc expanders.

 

The bra they sent me out of the operating room with was uncomfortable, and a little tight, but I didn't have any bandages.  He took the bra off the day after the surgery and I didn't wear anything after that except these wonderful camisoles that I found out about here on this site.

 

The drains were the worst part.  I always pulled them on something and they were always in the way and I had to "milk" them often.  Ask you doctor or the nurse about that as it's an important thing to do.  

 

I went in for my first expansion 2 weeks after my surgery, but since my drains were not ready to come out, he did not expand.

 

I went in for my second appointment for expansion 3 weeks after surgery and they did expand for a few weeks consecutively, until I started my chemo 5 weeks after surgery.  During my chemo, they expanded me right before the chemo and then gave me a week off.  So every 2 weeks, instead of weekly.  I believe my last expansion will be a week before my last chemo.  

 

The expansion process was painless when they insert the needle and I experienced no pain after.  My breasts were DD's to begin with so there was a lot of tissue to spare.  LOL  

 

I won't be considering the final reconstruction until after my chem is over sometime in the beginning of 2009.

 

Everyone is different and everyone's experiences are unique.  This is a great place to get educated and correct information.  

 

Good Luck

Danielle

 

 

Reply
twinnie1, Community Member
11/27/08 8:12pm

Hello. First of all let me say that it is too bad that you have to be faced with this but it will be okay down the road.  I went through basically the same process for the last twelve months. I have dense breast tissue too. I had a slew of biopsies and three surgeries. Finally I ended up with a bilateral mastectomy. I had my surgery Oct. 1 of this year. I am glad I did it. Truthfully, the pain was unbelievable when I woke up. I tell you this so you'll be prepared. It's okay because it works out in the end. It hurts to move your arms and all that and take all those deep breaths that they make you do. Everything is sore but the pay off is worth it. I felt free of worry. I felt free that everything was out of me.

 

It really helped that other women had shown me the end results of their mastectomies because I would think about it in the hospital and feel better. I had looked at pictures on the web of woman with mastectomies. That helped also. I really didn't think it was that bad when I saw myself. It was strange to see me without my breasts, but I was prepared and it helped a ton. I felt fine with it. My doctor told me to bring a pillow with me for the ride home in the car. It helped because it was a barrier between the breast area and the seat belt.

 

The skin expanders were put in during the same surgery. I am so glad I did it all at once like that because now, post op about 8 weeks, I am feeling almost back to normal. I have had them filled and all is going well. They look much better. The pain is gone and pretty much didn't last too long considering. At least for me, the filling up is fine, no pain. It's a little uncomfortable the first fill or two, but nothing bad. Each time I leave the doctor's office I am happier. When the doctor tells you to start massaging them, do it. I was afraid I would knock something out of place. I'm not sure why I thought that. It's not the case and they loosen up with the massaging. It minimizes the scar tissue too. Ask the doctor specifically what he or she means by doing the massage. Have them show you the technique they want you to do. It really helps. But again, wait until they give you the okay. It's a strange phenomena to have the muscle in front now too. I can see it moving, something that your breast tissue would usually cover of course. I can "flex" them. I found that out by mistake but it makes me giggle. Also, start the arm exercises as soon as they give you the go ahead too. It kept my physical therapy at a minimum. The American Cancer Society has a program called "Reach To Recovery" and they will partner you with someone in your area who has been through the same thing. They answer a lot of questions.

 

It's good to get other's experiences. It really helped me. I am grateful to all the women who have been so willing to share their experiences. I wish you well with everything.

 

 

Reply
sanjose, Community Member
8/27/12 10:48am

Hello twinniel

 

Thank you for sharing your story. Im having the same surgery, and wanted to ask you  1. Where did they cut you when they did the mastecetomy 2. Do you like how your breast look 3. did you stay with the same size that you where.

 

 

Thanks

Reply
PJ Hamel, Health Guide
8/27/12 12:00pm

Hi - You may want to try contacting Twinnie directly; this post has been up awhile, so there's no telling if she's still following it. Simply click on her name (in blue) at the top of her post, and you'll get to a page where you can send her a message. Best of luck with your surgery - PJH

Reply
karen, Community Member
12/ 8/08 10:06pm

On nov 19 I had a bilateral skin sparing nipple sparing masectomy with immediate reconstruction using expanders. The ps never was able to get enough saline in and I won't have to have any fills but will have to leave them in for 4 months. It is very painfull I cannot lie but my attitude was so good I think that helped. I had atypical lobular hyperplasia after my last benign tumor was removed. I have had 5 benign biopsys and dense breasts with so many cysts that it is pointless to do a manual exam. I feel lucky to have a choice about what to do and not to be told I had to get chemo and radiation. Let me know how it went. By now you have had your surgery but I would love to chat with you.

Reply
besurvivor, Community Member
3/26/10 2:25pm

This past January 6th I had a lumpectomy/particial mastectomy on my right breast for DCIS. The tumor was not more than 0.5cm.

 

They found IDC and had to do a reexcision and a Sentinal Node Biopsy on Jan 29th. There was more DCIS found and nodes were cancer free. The surgeon told me I would need to have a mastectomy on the right breast.

 

I decided to have a bilateral double because of my risk factors as well. I had 4 past surgeries on my left breast from age 12-19yrs for benign lumps, I also have very dense breast tissue. I am 49 years old. I am Her 2 + (3+), My tumor was high grade 3, stage T1a, Necrosiss present comedo type. All this mean agressive, so I opted for a double, and I don't regret it. I had the surgery for the bilateral Mastectomy and on March 10 and expanders were put in place at the same time. I will have silicone implants after the fill the expanders with saline and when they are ready, they will be removed and I will have silicone implants put in. They are safe and more natural.

I am having pain from the expanders, but nothing that is unusual. No infection. I have a nurse come in and check me out. Make sure you have support, time to rest and stay on top of your pain meds. Take only what you need so you don't feel out of it. I hate taking anything. Tylonal doesn't work for me right now, just too painful. I will stay on pain meds Rx (Dukayddud and Valium for spasms), and will wean off as soon as I can.

 

Keep in touch. Best of luck to you.

 

bcsurvivor

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PJ Hamel, Health Guide
3/25/11 4:49pm

Thanks for sharing - and hang in there. You're probably experiencing the worse of it right now; the fill process can be quite painful. Keep your eyes on the prize - being done, and having two new breasts. Take care- PJH

Reply
bcsurvivor, Community Member
3/25/11 11:02pm

Hi PJH

 

Wow! It's been just over a year since my Bilateral Mastectomy. Since then, I had all the fills, chemo, and Herceptin. You were right, the fills were the hardest part of the reconstruction, because of the pain, and spasms, as my muscle and skin were being stretched.

 

This past August 13, 2010 I finally had my change surgery to have the implants removed and the implants put in. Amazing! What a difference! It was a tough year, but I am so glad I decided to go through all the treatments. 

 

I had my nipple reconstruction on Feb 11th, and soon I will have the tatoo procedure done. I feel whole and confident again.

 

I know having reconstruction is a very personal choice and I can truely say, it was definately something I wanted to do for me. I wouldn't change a thing. If you have to go through cancer, you owe it to yourself to do what you want to do.

 

My last Infusion of Herceptin will be on April 8, 2011. I am Cancer free!! My hair has grown in very thick, and I wake up feeling blessed to be alive and well. I have so much to life for! I have so much to do in this life.

 

I am so thankful for the incredible team of doctors, nurses, my family, including my dog who didn't leave my side, my friends, and supportive co-workers, that helped me through this process. It has been an eye opening experience. There is life after breast cancer!!

 

I hope this will help others who are considering reconstruction as an option. Make sure you go to the best plastic surgeon, and carefully consider all your options. There are many. It's all about what is right for you.

 

I look forward to hearing from others. Thank you for your response.

 

Take Care,

 

bcsurivor

Reply
PJ Hamel, Health Guide
3/26/11 4:55am

Thanks so much for sharing your experiences here - you're giving lots of other women going through the same thing hope and comfort. And congratulations on being (almost) through treatment! Best of luck as you finish up, and continue on the road to health. Take care- PJH

Reply
breast cancer 2, Community Member
11/13/10 10:52am

Hi, your experience sounds very similar to mine.  In 2004, I was diagnosed with breast cancer and had a lumpectomy - dcis plus a possible stage one invasive but very small.  Pos margins so had to re-exise - agian with positive margins.  Plan B for me was a left mastectomy with tissue expander to be followed by a silicone implant, with right breast augmentation for symetry.  I was very happy with my results except that gradually, of course, my right breast sagged due to gravity and aging and I became very assymetrical.  This year, I decided to have a right breast mastectomy, and reconstruct both breasts using expanders followed by implants.  My final surgery is 11/22, but I will pass along this advise.  Please look at before/after photos with different types of implants.  The sizes and shapes differ alot and will make a difference in your result.  My ps thought that I would look better with a teardrop Mentor implant.  I am not satisfied with the result, as my upper chest seems flat.  I have decided on the high profile round implants, and my surgery on the 22 is a redo.  I wish I had looked at before/after photos of various sizes and shapes of implants prior to my last surgery. 

 

I will say that the expander/implant is the easiest option with results very similar to the flap procedures.  You should look at the before/after photos of the various procedures available on the web to help you decide.  Good luck...

Reply
Gammie, Community Member
1/ 1/11 11:02pm

I am 52 and was diagnosed with ductile,invasive breast cancer in my right breast. I chose a bi-lateral mascotomy with reconstructive surgery. My choice was to eliminate as much possibility of a reoccurace as possible. My expanders were put in the same time as the surgery, my drains were in for 17 days. My surgery was the 10th of December and I am having my first expansion the 7th of January.I don't believe they saved any skin since my cancer with in the mammory ducts but on the positive side my lymph nodes and all other pathology test came back wth no cancer cells. So far I have had a lot of pain, cannot drive, pick up anything or basically do anything, Dr's orders. The expanders are expanding tissue at my arms so I am even unable to put my arms down at my side. We do not know how many times we are going to expand. But I can say for all those who are or will be in my shoes, you get rid of the cancer and everything else you just take day by day and sometimes hour by hour. My chest or what will be my breast are pretty weird right now, odd  shaped, indentions, can feel the  expanders, no nipples so it's pretty ugly but alll will be fixed in time. Stay positive, remind yourself this was not an option  but a Life Choice, I choose to live and I am very grateful that I have always had a mammo once a year. It saved my life since the cancer was found early and in stage 1.

Reply
PJ Hamel, Health Guide
1/ 2/11 6:32am

Thanks for the positive message here. Going through the expander process is hard and painful, but when you're done, I'm sure you'll be very pleased with the result. Good luck - PJH

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By AZ, Community Member— Last Modified: 08/27/12, First Published: 11/09/08