What is the recovery like for a double mastectomy and reconstruction? What changes can I expect in my breasts after procedures are completely healed?

I was just diagnosed with Lobular Carcinoma In Situ (LCIS). I have a strong family history of both breast cancer and ovarian cancer. My doctor is recommending a bi-lateral mastectomy.

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Expert Answers

DrAttai (Physician - Surgery - Breast (Verified) ) - 01 / 02 / 2012

I agree with all the answers posted above! The reality is that each patient is different, the recovery time will vary tremendously depending on if reconstruction is performed or not, and if so, what type of reconstruction. General guidelines however are about 4-8 weeks to be back to full activity, again depending on what type of surgery is performed. Most patients are hospitalized for at least 24 hours, but again depending on the type of surgery and other factors (pain, nausea, etc), a 3-5 day hospital stay might be needed. On average drainage tubes are left in place for 7-10 days.

I would stress that many patients underestimate the time that will be needed for recovery - this is considered major surgery, and combined with the emotional stress of a new diagnosis of cancer, the best advice I can give is listen to your body and allow plenty of time for physical as well as emotional healing.
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Shared Experiences

member2721 (Survivor (1 year)) - 12 / 29 / 2011

Recovery can be different for all of us depending upon which method the mastectomy is performed and what type of reconstruction (if any) you are having. I had tissue expanders put in place at the time of my bi-lateral mastectomy, so I found them to be a bit uncomfortable. It felt as if I was wearing a very tight bra. It was difficult to find a comfortable position the first night, but by night 3 I was sleeping for 7 hours. By the 4th day I was sitting up with no problems- my chest was a bit sore, but not painful. I was off all meds (including Tylenol) a week after the surgery. Within 2 weeks I was sleeping on both sides without a problem. The only thing I had a problem with was getting back to my daily routine. I could go to work, but I couldn’t exercise! I needed to wait 3 months before I could get back on my horse or play tennis. My assumption is that one could get back to a milder form of exercise in a shorter amount of time. Again, you did not mention the type of reconstruction you are going to have, so I will just mention my experience. I have implants since I was not a candidate for any other type of surgery. What I love about my breasts now is that I do not have to wear a bra anymore (except for exercising) and of course they are exactly the same size and perfectly even. Downside is that since they are ‘fuller’ than a regular breast, you have a bit of ‘side boob’, which I don’t really like. I had skin sparing and nipple sparing surgery and the incisions were made right under my breasts, so you can’t even tell that I had surgery.
A friend of mine had a bi-lateral mastectomy a little over a year ago because of family history and being BRCA positive. She did not have cancer; she did it as a prophylactic measure. Interestingly enough, her roommate in the hospital was there for the very same reason.
Making the decision is a difficult one. I had a small cancer in one breast and a tiny one in the other. I chose a bi-lateral mastectomy over 2 lumpectomies for 2 reasons. I did not want to have radiation on both sides of my chest and I did not want to worry about a recurrence. It’s a difficult choice, especially with LCIS.
As I was told upon diagnosis, take a little time, collect all the information you can so you can feel comfortable with the decision you make. I wish you all the best.

member3968 (Just Diagnosed) - 12 / 29 / 2011

Thank you so much for your response. I haven't decided yet if I am going to do it. I have looked at the various types of reconstruction and, since I have plenty of extra to spare in my tummy and thighs I probably won't opt for the implants. But this would be a difficult surgery and I'm not sure I can go through with it just yet. I had my first MRI and waiting for the results. I'll have a better idea of what to do then. Thank you again for your response and well wishes.

member5598 (Survivor (2 - 5 years)) - 12 / 30 / 2011

I had a bilateral mastectomy with expanders inserted at the time of surgery. They did NOT stay in, they stretched the skin as much as they could (depending on how much of the skin the surgeon can save) and then inserted my implants, the biggest ones they could. I did not know if I was going to be smaller or larger. I came out a size larger which I was happy about. I think the only thing that bothers me the most is the coldness of the breast from the implants. I had to be careful on positions I slept in the beginning. I healed rather well and fast. When I lay flat they kind of sink in a little but I am used to that now. My incisions are straight across the breast, I do not have nipples and did not bother to have them constructed. I am happy with having everything done in one shot. I am going to go and have another plastic surgery done. Since all the swelling is gone I now have a "pocket" in my left side. I am going to have a larger implant inserted and nipples reconstructed now.
I wish you the very best on whatever you decide. The most important thing is stay positive. The attitude is what will see you through all of this. Prayers for a successful surgery and quick recovery.

Hugs
Suzanne

member2249 (Survivor (1 year)) - 12 / 30 / 2011

I opted for a bilateral mastectomy because I had a triple negative breast cancer that turned into 4 tumors in my left breast the sizxe of a golf ball in less than two months. For my own peace of mind, I thought it best to go with bilateral than just one side. Also, with reconstruction, it simplified things as they didn't have to match the breast to my other ones, they could in fact start from scratch.

I went with implants because the recovery time was shorter and also because de protocol I was on didn't allow more than 6 weeks between first round of chemo to surgery and another 6 weeks between surgery and radiotherapy co,bned with second tround of chemo. I had a skin sparing mastectomy, although my nipple of my left side had to be taken out. The surgeon did a wonderful job and at the time of mastectomy inserted the implants without going through the expander phase. I wasn't able to increase my chest size (which I would have liked sinfe I have small breasts) but I was happy with the results. The first week was uncomfortable for me, I could only sleep half seated and on my back. After that I could sleep on my sides as well. My arms had restricted functions for about two weeks.

In my third week, I was perfectly capable of doing almost everything. I even was off painkillers completely. ( I only had Demerol for a week, then Tylenol Extra strength every 6 hours). Week 4, I was able to start running, biking and ellitical training again. By 6 weeks, I was completly functionnal, not real pain or movement restriction.

I just had my nipple recontructed this september. The results are incredible. It looks so much like my other one and coversa the mastectomy scar to the point you almost can't know I had any surgery at all.

I hope this helps and wish you luck!

Mary

member1665 (Survivor (2 - 5 years)) - 01 / 03 / 2012


I also know that none of us would chose cancer. This...all of this.....is a big game of choosing the lesser of two evils. None of them is fully satisfactory. We would all like the real thing back and to never have had to walk this journey. 3 years later I am still trying to find that place of peace.

Breast implants are cold. My husband describes them as hard and shiny...thin skinned, and wondered if everyone else's feels that way. I don't let him touch it. It's off limits. I can't feel it and it bothers me that he might try to seek any level of pleasure through something that causes me so much emotional pain and I that I can't even feel anyway, so what is the point, exactly? To say breast cancer has changed my sex life is a gross understatement.

These emotional issues are ones nobody ever seems to talk about but I think the more we get them "out there" the more we can really help each other.

member4057 (Survivor (1 year)) - 01 / 03 / 2012

The recovery is different for every person. For me the process has been a long haul. I had a bilateral mastectomy in June 2010 with immediate reconstruction. I had tissue expanders until Dec 2010 at which time I switched out to implants. Had nipple recon in the spring and only this past Oct finished up with tattooing. I blog about it all at www.nancyspoint.com I also have a strong family history and tested positive for brca2. So for me the process/recovery has taken a year and a half. Still not totally adjusted.

member9744 (Survivor (2 - 5 years)) - 01 / 04 / 2012

During a mastectomy, chest muscles are cut and possibly the muscle under your armpit is cut. Your chest muscles are responsible for supporting upper body movements and this muscle under your armpit is responsible for raising and lowering your arm.

After surgery, you may experience tightness in your chest and a tightness when you attempt to lift your arm. For me, this was the toughest part. I assumed that after my bi-lateral mastectomies, I would be uncomfortable for a week, then move on to chemo and radiation and be done. I did not consider that I wouldn't be able to lift a cup of coffee!! If you start stretching as soon as the doctor gives you permission to, you can and will regain range of motion and flexibility. Check outhttp://movingonfromcancer.com/ for a video of rehabilitative exercises after mastectomy/lumpectomy.

member5300 (Current Patient) - 03 / 28 / 2013

I was diagnosed as BRCA positive in September, 2012 in my left breast which was weird for me since I don't have a history of any kind of cancer in my family and I'm only 40yrs old. I went through all of the testing for other cancers and thank God all were negative. Anyway long story short I had a bilateral mastectomy and tummy tuck for reconstruction of my breast on February 19, 2013 and even though its been over a month I still can't get a good nights sleep. Don't get me wrong my results look great but, I haven't been able to get a good nights sleep since before the surgery, I can't lay on my stomach and if I lay on either side to long my hips and thighs hurts, and I can't lay flat on my back due to the tension of the tummy tuck. Any suggestions I'm at my wits end and extremely exhausted. 

member1036 (Survivor (5 - 10 years)) - 02 / 01 / 2013

I just had implant surgery a few days ago and I feel fine, but let me tell you the whole story...mine may sound like a bad scenario at first, but I had radiation in both breasts after chemo. Radiation makes big difference. (They never told me, so I'm telling everyone.)

My first bout with breast cancer, I had a lumpectomy followed by radiation in the right breast. 2 years later I felt a lump in the left breast. They kept telling me it was a milk duct. Finally, as it grew larger, they did an ultrasound, saw nothing but the doc felt the lump and ordered a biopsy and it turned out to be a 2cm cancer lump. Why on earth mammograms did not "see" any of my cancer is a mystery to me. I found both of my lumps while applying moisturizer; guess having dry skin saved me...who would have thought?

I had the gene test done as I was debating whether or not I wanted to subject myself to 5 years of Tamoxifen, and shortly after getting the results (BRCA2 positive) I went ahead and had my ovaries removed since my cancer fed off of my own estrogen and I was also high risk for ovarian cancer. While recovering from the oopherectomy (ovaries removed) I was shocked to find 3rd lump growing back on the right breast. 2 months later I had a full bilateral mastectomy, removing both breasts and nipples.

As my skin had been treated with radiation, my healing was slower, and it was very painful. They did insert the expanders since I had the intention of following up with reconstruction. The first 2 months I felt as though the skin on my chest was on fire. It was a constant burning pain, with occasional sharp knife-like stabbing pains a few times a day to get my attention. The first time I had the stabbing pain I was driving and I almost wrecked the car, it hurt so badly. I had to pull over and catch my breath. I suspect the stabbing pains were due to the nerve damage, as they removed quite a few lymph nodes.

I want to add that I had many animals in my care throughout my life, and while I did my chores I wore latex gloves and took every precaution with cleanliness, and never had an issue. I do believe that doing my chores, which required raising my arms up to clean stackable cage trays, etc., helped me in the long run, as far as range of motion is concerned. I won't lie, it hurt like hell the first few times, I honestly thought I was ripping my armpit scar open, but by keeping up with my chores I actually prevented scar tissue from limiting my range of motion. I was lectured on lymphedema, and what is ok for me may not be ok for someone else...I'm not telling someone that has never lifted anything heavier than a bag of groceries to go out and lift an anvil, but you get what I mean...if you can at least move your arms gently to work up to a gradual reach for your range of motion, the better off you will be. I see women a year after their surgery that cannot even lift their arm above their shoulder, and that doesn't have to happen!

Back to my sore chest...I used the cold gel packs constantly but the best thing I did was buy these little light-weight cotton shirts that snap down the front...they look like something you'd wear to bed, and that is what I had originally bought them for, but they became the ONLY things I could wear for 2 months, as the mere touch of a typical t-shirt hurt the skin too much. I could not even wash with a cloth, but I just gently bathed that area with antibacterial liquid soap and my hands. I dabbed triple antibiotic and later aloe to help with healing. If you didn't have any radiation, you probably won't have as much trouble as I did. The drains were just plain gross, but you gotta do what you gotta do. I found it interesting that what drained into the bulb looked like red tropical fruit punch, not blood. Thank goodness they aren't on for long.

The expanders were rather uncomfortable, but not painful. After I got through the 2 months of "chest on fire" and I started to heal, it just looked worse that it felt. My boobs were purple! Like a couple of eggplants on my chest! The skin felt so thin, and it was cold...I mean my entire "boob area" was cold to the touch, like a reptile, weird! Thank God I'm single, I don't think I could deal with a man trying to grope at my boobs, even now, ugh! The purple was actually bruising, and it did fade away but it was so slow, it took about a year for me.

The expanders were odd, when I went to the doctor and she injected more solution to help stretch my radiated skin that didn't want to stretch, I felt like I was wearing a scuba diving suit that was way too small, I could not even take a deep breath. When I finally had the surgery to remove the expanders and get my implants, it did not go well, but again I think that is due to my skin being radiated as well as choosing implants that became discontinued. Those implants were awful, felt like a couple of rocks on my chest, and I can't imagine how much worse it would have been if they had been large. They didn't even fill my B cup bras. It was so very uncomfortable and I couldn't really take a deep breath, but my doc said it is very different with radiated skin.

About 2 years later at a follow up appointment, I asked doc why was one breast 4 inches higher than the other...I had one high beam and one low beam! Also I was getting a stabbing pain in my side when I moved a certain way...about 50 times a day. So, she noticed how hard the implants were and as they were now discontinued, I had another surgery to replace them. I guess my skin had healed to a certain degree by now, because this surgery was amazingly easy, and I only had to take pain killers for 3 days. She also removed scar tissue, so that solved the stabbing pain issue.

3 years later, I still had 1 high beam and 1 low beam, I guess about 2 inches difference, and also I had this annoying "dent" like my bones were sticking out above my breasts, so I could no longer wear V-neck shirts. My doc said she could help by removing more scar tissue to lower the breast that is 2 inches higher and use some of my own body fat to fill in the "dent" areas above the breasts. I just had this surgery done a few days ago, on Tuesday, as an outpatient and the next day felt fine and tended to my animals outside. Today is Friday and I haven't even needed any more of the pain pills. My breasts are not eggplant purple either. I do have a little soreness, but it is minimal.

So...I didn't mean to write a book here, but I wanted to give you insight, and anyone else that may read it, that if you have radiation, your pain and healing process may be longer and more painful. If you have the mastectomy and get the expanders put in, I think it may help you with the adjustment of it all, and be better prepared for reconstruction. If you are not having radiation, your healing should go quicker, like mine finally did a few years later. I also have 3 aloe plants and use the real gel often, and I swear by it...after incisions have already healed obviously. One thing I want to mention...if you feel discomfort please tell your doctor, don't suffer in silence, let doc know so something can be done sooner rather than later, and don't ever feel weird trying to describe your issue whatever it is...some of the things I said were obviously not normal verbage, but being new to cancer when all of this happened, I just used the best words I could find, and many times I said something that made us all laugh, myself included. I wish you the best, and may God Bless you through this journey!

Hello again, I just wanted to say hello and let you know you're in my thoughts and prayers. I can give you an update and hopefully some uplifting with that, too. My healing is going very well indeed, I'm happy to report. My breasts have no pain and they are level (no more high beam, low beam!). After the incisions healed I began using aloe for a week then switched to shea butter to help heal the scars, and so far I really do notice a difference, the scars are not nearly as ugly as previous ones...I think they might heal so well this time, I will be able to get areola tattoos. I won't get nipples, though, not my kind of look plus doc said radiated skin might be difficult for building a nipple but that's ok, I don't need them. I do have one small "rougher spot" of skin where it was radiated the most recently, about the size of a half dollar, but I put shea butter on that area as well. Doc told me to massage the area, and I never did that before with my other surgeries, mainly due to pain. This time I am able to rub the shea butter on the scar then gently massage all around the perimeter area, where breast meets body, and it does not hurt at all. I guess by being able to do this, I will minimize scar tissue...I hope. This time, my breasts actually feel more real, like flexible, not rigid like the other times. Does this mean my radiated skin is healing? I think maybe so. :)

The areas where she injected my own fat, above the breast implants, is fuller, so I have no more bony indent, thank goodness. This is the most real my breasts have looked since the beginning of this whole journey, and I am grateful. I have some v-neck clothes just waiting to be worn again! The scar from the lipo instrument to put the fat in is very, very tiny and I think it will eventually heal so well, it will be hard to find. I put a bit of shea butter on all scars, even the old one in my arm where my chemo port was. I bought organic shea butter, looks like a block of vanilla fudge. I keep it in a ziplock bag. I just take a little piece, let it get "melty" on my hand and then gently rub it on. So far so good, I like it. I did some reading about shea butter and it's really good for skin. I have dry skin on my hands due to washing them a zillion times a day, so I put the shea butter on them before bed and wear cotton gloves, and my hands feel and look so much better. If you ever get dry, cracked finger tips in the winter, try shea butter and gloves.

My breasts were a little pink but did not turn eggplant purple at all, and by now are normal skin tone. I am really amazed by the lack of pain. In fact, the areas where they took fat from with the lipo (my love handle and inner thigh areas) were really the only discomfort places I had this time. I used a heating pad on the back and thighs a few days and rubbed Arnica gel because the lipo left bruising and that gel helped with pain as well, I think. Taking Aleve helped, also.

This is quite a journey, it is physical, and can be emotional, so I will keep you in my prayers. God bless you and remember you are not alone. Hugs to everyone!
Liz
03/12/2013
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