Should I get a mastectomy for my breast cancer recurrence?

Hi Mary, Im so sorry you are dealing with this again. Your thoughts and worries on mastectomy are completely understandable and I hope someone from the Community shares their experience soon. In the meantime I would like to suggest that you post this request into the Surgery and Recovery community too. It should be top of mind for lots of patients over in that group! Glad you are here. 💛 Suzanne (Community Moderator)

Have recently had a double mastectomy due to ILC ER/PR+ (4/4/25) There was no choice for me, my tumor was too large, and honestly, I wanted the double mastectomy anyway. My view: get the cancer out, if it was there one time it may come back. Plus cosmetic reasons as well. Everyone has a personal choice when it comes to their journey. Mine is still ongoing.. it is scary but the surgery was the easiest part of my journey thus far. I hope this helps, and you find your way on this crazy ride. We are here for you sister♡

This might sound odd, but given your age, why not opt to remove the tumor (and a decent margin) and in addition do cosmetic surgery on BOTH breasts to leave you with balanced (albeit smaller) breasts. I ended up with a mastectomy, in stages, and now have 2 implants (something I never thought I would go for) — but the takeaway is that I used to have large breasts and now have small, nicely proportioned breasts — and I don’t regret that at all. Bottom line, figure out your comfort level, ask the ONCO to set you up with similar patients who have successfully undergone mastectomies. You might surprise yourself. And congratulations on making it this far. It’s not an easy decision, but it is yours to make — see if you can’t get support for making this decision…. xoxoxo

I already have small breasts and barely fit into a C cup The only reason I have as much as I do have is because I’m overweight but I’m definitely lopsided one is bigger than the other Because for the first surgery they took out a large amount of the bottom half of my breast so I still have a breast but it’s not all there Thank you for your input I do have a lot to weigh on. when I see the team on Monday

God bless you dear! Please speak with your medical team and don’t hold back on your questions & concerns. This is all terrifying, but you will receive the support to help you make these tough decisions. We each have a different journey and I send you hugs to find the strength as you contemplate your decisions! Stay strong!

I didn’t want to go thru this again so I got a b/l mastectomy so I would not have to go thru this again is my hopes getting reconstruction done after treatments.

So I have opted for a mastectomy Because this seems like the best option for no recurrence I probably will have to take an aromatase inhibitor to block estrogen from forming and creating another tumor I have heard a lot of negative stuff about tamoxifen and I don’t like the side effects that are associated with that drug I can’t believe they haven’t come up with something other than tamoxifen even after all the years it’s been out there!! I haven’t had my surgery scheduled yet but I’m sure it will be coming up soon Thanks for all of your comments and advice !

Good luck. There are other AIs out there, maybe your doctor would choose a different one. Speak to your doctor. I'm on Arimidex.

Ask about the Oncotype too. Might make a difference in your plan of care, in addition to the cancer subtype, eg. Invasive Lobular, or Invasive Ductal, etc. Best wishes to you.

Hi Mary, I I also had breast cancer in the left breast in 2001 through 2002. I chose to do a lumpectomy and radiation. In 2019 I had a reoccurrence in the same breast. I chose to have a double mastectomy. I had a very hard time with the skin on the left breast that had already been radiated in 2002. I went through two expanders that would fail every time because the skin would necrosis, turn black, and die, leaving my expand exposed. I finally ended up going to a different plastic surgeon that my plastic surgeon recommended who ended up doing a lat flap, which is taking the skin and , litmus muscle off your back and moving it to your front breast for some healthy skin. It worked well for me, but I did have to go through about a year of healing in between all the surgeries. I’m not saying it will happen to you, but you never know. I thought my skin through radiation stayed healthy. It showed no signs of deteriorating. And I was really surprised when it did, because it had been 17 years in between cancer diagnosis, this is just my experience, and I don’t think it happens to everyone, but just beware it possibly could. good luck with all your going through and I pray that you will have good success with whatever you decide.

Thank you so sorry you had to go through all that But I’m not planning on having any kind of reconstruction just going to go through the prothesis route when I go out in public .

Cherie S- yes they’re going to do the oncotype and some other kind of test to determine the plan of treatment I’m hoping for no chemotherapy and maybe a low-dose aromatase inhibitor I do not want to do breast reconstruction Thank you for your information

Janet J have you noticed any side effects with what you’re taking and how long have you been on it?

Mary, I was also terrified of mastectomy. Because of the advanced nature of my cancer, i had no choice. So I had a complete mastectomy. I had a very good surgeon, so the scar is not bad. And honestly, at 62, I find that I don’t really miss it so much. I just wear a bra that’s padded on one side. I hope this helps.

Mary, they do have alternatives to Tamoxifen now (aromatase inhibitors.) They’re considered first line care. However, I was on one of them for 3 months (letrozole,) and I’m now requesting Tamoxifen because the AIs cause joint pain, bone deterioration and immune suppression. Tamoxifen does not, and has nearly identical recurrence risk reduction.

Vicki F The only thing I don’t like about tamoxifen is that it can cause blood clots

I had a left breast mastectomy for widespread ductal carcinoma June of 2024 right before I turned 39. I know everyone is different but really it wasn’t that big of deal to me 🤷🏼‍♀️. I have two kids who were past breast feeding and we weren’t having more so what was a breast to saving my life.

Vicki, AI’s do not cause immune suppression. Your immune system actually ramps up and causes inflammation which leads to symptoms we all dislike such as arthritis.

Treatment decisions, especially about mastectomy versus lumpectomy for recurrence, involve many personal and medical factors that only your care team can fully evaluate with you. This is understandably a frightening time, and it's completely natural to feel scared about such major decisions - many people in this community have faced similar crossroads and found strength in sharing their experiences and concerns with others who truly understand.