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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Greetings all
I had a double mastectomy in October and had an infection on the left side so I had to go back to clean up the infection in November ….and a stay over night …
All went well ….PT really helped for motion !!
Everyday I get up I am surprised that all this happened I am now 76 as of 5 days ago. But most of all I am grateful I list reasons everyday yo be grateful.
am most grateful for all of you while going through the decision making process of what to do I had posted to this sight and I immediately knew this was a group of caring, helpful people going through a variety of breast cancer etc.
I wanted to connect by praying everyday for all of us !!
I have committed to this prayer everyday for those who have this cancer and all the ups and downs it brings …..
When you are down and suffering no matter what day or night there are others fighting for you !!!
Stay in the moment reach for the future !!!
Lifting each other up!!
🙏🏼❤️ hopeful 2024

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@jane2024

I read about it on the internet, like a chest wall reconstruction after the breasts are removed to make sure the chest will be flat and smooth. These are all new to me.

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I have not heard of that @jane2024. I did not have any chest reconstruction. I am flat, with a scar on each side that is, at this point, hard to see.

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@windyshores

I have not heard of that @jane2024. I did not have any chest reconstruction. I am flat, with a scar on each side that is, at this point, hard to see.

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Great to hear that. I hope to have a flat and smooth chest after the surgery. I will show some photos to the surgeon to make sure we are on the same page. Thanks

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@hopeful2024

Greetings all
I had a double mastectomy in October and had an infection on the left side so I had to go back to clean up the infection in November ….and a stay over night …
All went well ….PT really helped for motion !!
Everyday I get up I am surprised that all this happened I am now 76 as of 5 days ago. But most of all I am grateful I list reasons everyday yo be grateful.
am most grateful for all of you while going through the decision making process of what to do I had posted to this sight and I immediately knew this was a group of caring, helpful people going through a variety of breast cancer etc.
I wanted to connect by praying everyday for all of us !!
I have committed to this prayer everyday for those who have this cancer and all the ups and downs it brings …..
When you are down and suffering no matter what day or night there are others fighting for you !!!
Stay in the moment reach for the future !!!
Lifting each other up!!
🙏🏼❤️ hopeful 2024

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Thanks a lot for sharing your experience and the kind words. Much appreciated!

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@jane2024

Thanks so much to everyone for sharing your experience as I am seriously considering having a double mastectomy instead of a lumpectomy plus radiation as initially suggested by the surgeon. I would like to know if you had the aesthetic flat closure at the same time as the mastectomy and if you have a good surgeon in the greater NY area that you can recommend. It looks like there is little information on going flat on the websites of some major breast cancer centers. Many thanks!

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This site is very informative and may help you. Mine is on the 13th.https://www.flatclosurenow.org/resources

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I have seen pictures of the flat close you speak about on the intranet. I had a skin saving mastectomy with implants. I did not get to keep my nipple area due to my BRCA2, so I did not choose to go flat. I wanted to retain a bit of being a women. I would bet this site has more info in the breast forums.

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Hello to everyone! I had a double mastectomy at the Mayo in Jacksonville, FL with reconstruction last March, 2023 (It's been a year!). I had my 2nd and final operation in October to replace the tissue extenders. I was able to keep my nipples even though I had triple negative BC with the BRACA1 gene. My left breast, the healthy one was done with the robotic nipple sparing technique while my right breast was done by hand. The robot is only approved in the US for healthy breasts. I am so happy with the result. I look normal, just a little more perky than I was. I am 62. The scar from the robot is about 3 inches long on the side, under my arm and is fading more and more each day. The right breast scar can hardly be seen as it's under the breast. The only side effects that I have are my hands, mainly my fingers are "frozen" when I wake up in the morning and it takes a while to get them warmed up and working again. I am guessing it's from the nerves or the position my arms were in for 9 hours of surgery because that's when I noticed this side effect. I just deal with it. Praying for everyone who has a BC diagnosis. You will get through this on the other side. Just keep the faith, be thankful every day (I keep a gratitude journal) and know that God is in control.

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Hi all. I had a bilateral mastectomy in December 2016. I did not have any type of reconstruction as I had read of that being the part with the most complications. At 69 I was not concerned with having a flat chest. I had no complications and other than the annoying fluid drainage procedure for a week post-surgery I have no complaints. I bought prosthetic breasts and bras to wear but have rarely used them and only occasionally do I think about how my flat chest looks in public.

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@eurojones2

Hello to everyone! I had a double mastectomy at the Mayo in Jacksonville, FL with reconstruction last March, 2023 (It's been a year!). I had my 2nd and final operation in October to replace the tissue extenders. I was able to keep my nipples even though I had triple negative BC with the BRACA1 gene. My left breast, the healthy one was done with the robotic nipple sparing technique while my right breast was done by hand. The robot is only approved in the US for healthy breasts. I am so happy with the result. I look normal, just a little more perky than I was. I am 62. The scar from the robot is about 3 inches long on the side, under my arm and is fading more and more each day. The right breast scar can hardly be seen as it's under the breast. The only side effects that I have are my hands, mainly my fingers are "frozen" when I wake up in the morning and it takes a while to get them warmed up and working again. I am guessing it's from the nerves or the position my arms were in for 9 hours of surgery because that's when I noticed this side effect. I just deal with it. Praying for everyone who has a BC diagnosis. You will get through this on the other side. Just keep the faith, be thankful every day (I keep a gratitude journal) and know that God is in control.

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I didn’t even know they do that robotic nipple replacement. What are tissue extenders? Why are they needed?

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I had bilateral and chose to go flat, I only have two issues from the surgery. My definition of "flat" and the surgeons were different; my closure is not as visually appealing as I would have liked. I have lumps on the sides of my chest; I have a bump in the middle of my chest and the breast area looks as if the flesh was scooped out and concaves inward. I'm not sure if this was because of what needed to be done for the surgery to get everything or not - but what's done is done. I'm 71 and don't intend to have any reconstruction. The second issue is they removed lymph nodes under my arms and the closure now makes it slightly difficult to shave my underarms. There seems to be an indent that is difficult to shave - I've tried both a hand razor and an electric shaver - it takes a while to finally get it shaved for the summer months.

Do I regret going "flat" - definitely NO; do I regret making sure the surgeon and I were on the same page for the definition of "flat" - definitely. In hindsight I should have taken a picture to make sure we were on the same page.

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