Double mastectomy: Anyone have major side effects and/or regrets?

Posted by mitch3194 @mitch3194, Dec 21, 2023

Anyone have a double mastectomy have major side effects and/or regrets?

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I felt relieved right after BMX in January. I went flat and have no regrets. I have regained all range of motion but start feeling tight more now even though I do stretching every day since the wounds are healed. Did anyone have the same problem and what are the recommendations on how to get rid of it? My oncotype is low enough that chemo is not effective so now I'm taking exemestane. The side effects so far is blurry eyes and petechia which I try to minimize by taking every other days. Best of luck to everyone.

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I had a double mastectomy one year ago and DEIP flap reconstruction this summer. No regrets on the mastectomy.

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Profile picture for briarrose @briarrose

Bilateral mastectomy May 12, 2025. Scars healing nicely, I gently massage them with Vitamin E oil or use a little silicone ointment. Plus I was faithful to the exercises given although I did not do x3/day - just once but I made sure to do them well. I had frozen should x2 in my life and didn't want to go through that again. Also started chair yoga for more gentle stretching. Radiation not an option for me because of heart disease and my oncotype testing was low so chemo would not be effective for me. Started Anastrozole 1 mg. daily with no major side effects (so far), now on it 3 months.
I have NO regrets about my mastectomy. It was the right way for me to go. My sense is (& from what I am reading on these posts) I haven't read one story in which a woman HAD regrets on her mastectomy.
Everything works out fine with it...despite your initial feelings it will be horrible to have a flat chest.
You need time to process this all before your surgery of choice. The very best to you!

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No regrets! Had mine July 9, 2025. My incision is technically healed, but I am actively working on minimizing scaring by masssging with vitamin D oil. I too did not require radiation or chemotherapy. I did lymphedema exercise exercises, two weeks preoperatively, and begain again one week following - and I continue to do these daily. I have residual lymph of 9% in my right arm and in my left. My condition is not considered to be chronic but acute and I can continue to bring down swelling (honestly you really can't even tell when you look at my arms; they just feel a tad heavy to me). I probably had some swelling because I hadn't learned how to clear what I called my parasternal and paravertebral lymph nodes in my preoperative training. We expect my lymph reading to come back down to preoperative in the next few weeks. If they don't, I will probably be fitted with compression sleeves. But maybe not because even though I am higher from preoperative, I am still in the "normal" (statistically good) range. I have also done my PT exercises regularly- that was hard at first because I felt tension in my pectoral region and limited mobility in both shoulders. This resolved within the first several weeks and I have 100% range of motion back on my left and 95% range of motion back on my right. Although to be honest, my right side always had a little bit less mobility than my left. My right side difficulties could be related to having a lumpectomy way back in 1989 where we did nothing preoperatively or postoperatively to manage swelling, etc. I also had a lumpectomy in my right breast in May - and at biopsy with a second pre-cancer found I had the mastectomy in July. So my right side has been fully assaulted!

It's kind of bizarre not having breast because when you look down you see your belly, not breasts - but on the plus sides it's easier to lie on your tummy, easier to get your arms around large or bulky packages, easier to trim hedge (I did that the first time this week), there is no need to wear bras (although I am still wearing my compression camisole. I recognize this joy when I don't need to be under compression), or under-breast sweat... I am sure I will find more pros over the next few months.

Although I had seen pictures of mastectomies, and I chose to remain flat, so I saw plenty of pictures before really committing to that choice, it was still a bit disconcerting to see my chest and scars post op - but I quickly overcame these feelings and am happy to report I am more satisfied with my decision, and the appearance of my scars, every day. If someone does not know that I've had a mastectomy they don't even notice - another plus! The only thing I dislike, and maybe others have not had this happen, is that when I get really cold, my pec muscles shiver...wierd sensation! I live in Michigan, so I suppose I will get used to this eventually... I never recognize how much insulation my breast tissue provided to my chest wall. BTW I had complete sensation on my chest postoperatively until I began PT - and then an inch above and below my incision went numb ... several weeks into PT the numbness diminished, and I basically have full sensation back. You should know some women report they don't feel sensation on their chest - but I've never heard any of those women say they regret having them mastectomy because they lost chest sensation. Maybe someone who's had that experience can chime in. Good luck with your decision.

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Profile picture for myoga @myoga

I felt relieved right after BMX in January. I went flat and have no regrets. I have regained all range of motion but start feeling tight more now even though I do stretching every day since the wounds are healed. Did anyone have the same problem and what are the recommendations on how to get rid of it? My oncotype is low enough that chemo is not effective so now I'm taking exemestane. The side effects so far is blurry eyes and petechia which I try to minimize by taking every other days. Best of luck to everyone.

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I'd return to your PT if you feel tightness again. I was told it could take months to years to fully recover; this includes residual swelling as we increase our physical activity. Apparently the lymphatic system has to kind of rewire itself to remove fluid, and if fluid isn't removed quickly enough, you can get adhesions. Adhesions are stretched through our PT but a PT can also do a myofascial release. I required a couple of releases - immediately following my range of motion dramatically improved; and of course, I felt a reduction in tension across my chest

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Profile picture for anatomary @anatomary

I'd return to your PT if you feel tightness again. I was told it could take months to years to fully recover; this includes residual swelling as we increase our physical activity. Apparently the lymphatic system has to kind of rewire itself to remove fluid, and if fluid isn't removed quickly enough, you can get adhesions. Adhesions are stretched through our PT but a PT can also do a myofascial release. I required a couple of releases - immediately following my range of motion dramatically improved; and of course, I felt a reduction in tension across my chest

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Thank you! Adhesions are probably what I feel. I have a PT appointment in a few days and will talk to her about it. I probably will ask for myofascial release too. Thanks again!!

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Profile picture for kedisaacs @kedisaacs

I had a double mastectomy one year ago and DEIP flap reconstruction this summer. No regrets on the mastectomy.

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How has your experience with DIEP flap? And would you do it again? I'm considering DIEP or going flat.

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Profile picture for anatomary @anatomary

No regrets! Had mine July 9, 2025. My incision is technically healed, but I am actively working on minimizing scaring by masssging with vitamin D oil. I too did not require radiation or chemotherapy. I did lymphedema exercise exercises, two weeks preoperatively, and begain again one week following - and I continue to do these daily. I have residual lymph of 9% in my right arm and in my left. My condition is not considered to be chronic but acute and I can continue to bring down swelling (honestly you really can't even tell when you look at my arms; they just feel a tad heavy to me). I probably had some swelling because I hadn't learned how to clear what I called my parasternal and paravertebral lymph nodes in my preoperative training. We expect my lymph reading to come back down to preoperative in the next few weeks. If they don't, I will probably be fitted with compression sleeves. But maybe not because even though I am higher from preoperative, I am still in the "normal" (statistically good) range. I have also done my PT exercises regularly- that was hard at first because I felt tension in my pectoral region and limited mobility in both shoulders. This resolved within the first several weeks and I have 100% range of motion back on my left and 95% range of motion back on my right. Although to be honest, my right side always had a little bit less mobility than my left. My right side difficulties could be related to having a lumpectomy way back in 1989 where we did nothing preoperatively or postoperatively to manage swelling, etc. I also had a lumpectomy in my right breast in May - and at biopsy with a second pre-cancer found I had the mastectomy in July. So my right side has been fully assaulted!

It's kind of bizarre not having breast because when you look down you see your belly, not breasts - but on the plus sides it's easier to lie on your tummy, easier to get your arms around large or bulky packages, easier to trim hedge (I did that the first time this week), there is no need to wear bras (although I am still wearing my compression camisole. I recognize this joy when I don't need to be under compression), or under-breast sweat... I am sure I will find more pros over the next few months.

Although I had seen pictures of mastectomies, and I chose to remain flat, so I saw plenty of pictures before really committing to that choice, it was still a bit disconcerting to see my chest and scars post op - but I quickly overcame these feelings and am happy to report I am more satisfied with my decision, and the appearance of my scars, every day. If someone does not know that I've had a mastectomy they don't even notice - another plus! The only thing I dislike, and maybe others have not had this happen, is that when I get really cold, my pec muscles shiver...wierd sensation! I live in Michigan, so I suppose I will get used to this eventually... I never recognize how much insulation my breast tissue provided to my chest wall. BTW I had complete sensation on my chest postoperatively until I began PT - and then an inch above and below my incision went numb ... several weeks into PT the numbness diminished, and I basically have full sensation back. You should know some women report they don't feel sensation on their chest - but I've never heard any of those women say they regret having them mastectomy because they lost chest sensation. Maybe someone who's had that experience can chime in. Good luck with your decision.

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I had double mastectomy 3 years ago. Wad planning to have reconstruction, but developed a hematoma, emergency surgery 14 hours after mastectomy. 11 days later, had left expander removed. My body rejected it. Remained flat after. I love it! No more bras, back aches, shirts fit better, everything about it. I have no feeling in my chest. That's been an adjustment, but it's part of my life journey. I'm super happy to be flat chested!! That's me on the right. It's a really personal decision what each of us decides to do. ❤️

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Profile picture for pancake436 @pancake436

How has your experience with DIEP flap? And would you do it again? I'm considering DIEP or going flat.

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The DIEP flap surgery was 16 hours. I am 10 weeks out and still can't stand straight and have a lot of back pain because of all the work they did on my core (stomach). I have had a lot of pain. If I had it to do all over again, I would not do the DEIP and would just go flat. Everyone has a different pain threshold; mine is just not high at all. If you have any questions for me, please reach out.

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I do not regret it. A Dbl mastectomy in late 2022. I had skin saving with implants. I sometimes forget because I am the same smaller size i always was. I had a hematoma after my surgery, but the breast was opened again, cleaned out and the implant put back in with no problems. I also had fluid collect, two aspirations to remove it and bra padding by me to remove any space for fluid to develop. Compression is necessary for a good while after.
I had trigger finger and stiffness for months. Lack of stretching by me was the underlying reason. It hurt, so i did little moving. I went to the occupational therapist about 6 times. I was super stiff and working with the therapist helped me see all i could do as nothing was torn or messed up. Unused.

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Profile picture for mitch3194 @mitch3194

I was told that they do not recommend compression sleeves anymore. I guess you can still get them. Not sure if it would help me as I mostly feel it under the arm and side of my chest.

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Agree

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