Anyone who had prophylactic BMX: regrets/satisfaction?

Blue1002

For people here who have had a bilateral preventive mastectomy, how do you feel about your decision?

New here, and I just wrote another long post with my life story, so sorry for multiple posts, but as so often happens I'm just figuring out as I go what are the questions I really want to ask.

I have a tumor (mucinous carcinoma) requiring mastectomy on my left breast (big tumor, small boob). So far, no evidence of cancer on my right breast following mammograms, biopsy of one sketchy cyst, and genetic screening is negative. When I brought up the possibility of a bilateral mastectomy my doctor made me feel like I was a little cray-cray but my husband found an article on this site (can't post the link but the title is "One in Six Women Choose Double Msstectomy") and that made me feel like, well maybe I'm not crazy to think about it because obviously other women do it.

Two basic reasons I'm considering this:

-I want to get implants and reconstruction. I'm sure my ps will do his best to "match" them, but from my reading the "real" boob and the mastectomy-implant boob will always look a little different. If I do a BMX and implants on both sides, they'll both be fake but they'll match better I think?

-Screening. I'm honestly not a big worrier (perhaps this cancer will change that? - but in general I'm not a "wake up in the middle of the night worrying" person). What I am is a lazy, low-maintenance person lol. The thought of getting screened every year and having to do enhanced screening with my dense breast tissue + an implant seems like it will be really annoying. And of course I'll have to get mammograms/screening every year regardless, right? Just seems more stressful and harder when I've got an implant under my natural breast tissue on the right side.

It seems like a lot of research focuses on survival rates, and there's no benefit in terms of survival rates for single versus double mastectomy. But I feel like that doesn't take quality of life into account. What's going to be easier for me? What's going to give me more peace of mind? I'm 46, I have two young kids. I want to get the surgery, recover, and get on with my life (doesn't everyone, right?!)

I know that everyone's going to have a different experience and will feel differently afterwards, physically and psychologically. I would just really appreciate hearing about people's experiences if you went through this and how you feel about it.

Thanks!

Beesie

Just replied to your other thread. It's alway better to stick to one thread so that everyone's answers are together and those responding can reference and build on previous replies.

That said I add make a comment here that may not be well received and might get responses. To your specific question here, I don't think you will find any people who've had a PBMX who will post to say they regret it. There are two reasons for that, both tied to the fact that once the surgery is done, it's done, and there is no going back. So from the standpoint of whether it was the right decision, it's impossible for anyone to know what it would have been like to have not done it. There is no point of comparison. So of course everyone will say it was the right decision. Secondly, even if the prophylactic side has caused someone enormous issues, after making such a life changing and unchangeable decision, it's simply not in human nature to say that the decision was wrong. Cognitve dissonance kicks in. The decision was right, even if the outcome has not been ideal. That's not to be critical - it's a natural reaction and coping mechanism that drives how we think.

The better question for you is "what's right for you?" As I suggested in my other post, take a read here, so that you can make the best decision for yourself, regardless of anyone else's experience. Because the one thing that is certainly true is that everyone's experience is different and there is to way to know how you will fare, either physically or emotionally, until you go through it:

Topic: Considerations: Lumpectomy w/Rads vs. UMX vs. BMX

https://community.breastcancer.org/forum/91/topics/868997?page=1#post_5609656

DiveCat

To your specific question here, I don't think you will find any people who've had a PBMX who will post to say they regret it. There are two reasons for that, both tied to the fact that once the surgery is done, it's done, and there is no going back. So from the standpoint of whether it was the right decision, it's impossible for anyone to know what it would have been like to have not done it. There is no point of comparison. So of course everyone will say it was the right decision.

I think this is a fair comment. @Blue1002, both my mastectomies were prophylactic due to high risk of hereditary breast cancer (>40% lifetime) for me. I don't regret it because I did experience a huge sense of relief from the stress of that risk. Breast cancer in my own family has had really sad outcomes (great grandmother, grandmother, and mother all died before 60) and for me the risk of that future was a strain. So yes, it's done, and so there is a sense I can't go back anyway, but for me the emotional benefit was significant (as well as relief from high risk screening) - but again for me I had no DX, so for me “either breast" could (though not certainly) end up as the one with cancer and I wasn't in same shoes you are.

But that is not to say it is all roses. It is a hard thing to have lost sensation. I did not struggle as much with that but other women in my life have. It's a hard thing to deal with the recovery and healing. It is a hard thing to have to adapt to a different body. It is a hard thing to have had three more surgeries since, and planning for another. Not to say you won't have that with a single MX, but you basically increase your risks and well, with a single MX you won't be also losing sensation of your “good side". For some that is something they grieve - my mother did (one was due to cancer, other was prophylactic but recommended by her medical team due to her lobular diagnosis and family history).

Also, like you pointed out, there is no benefit on survival rates. A bilateral diagnosis is relatively uncommon (and why it's a potential risk indicator for genetic mutations etc). Recurrences are usually more localized or distant (metastasis) and so prophylactic mastectomy of the “good breast" won't affect that risk.

Beesie has given you sage advice and a link, so I just encourage you to truly think about what is right for you considering all the factors you can right now.

Blue1002

Beesie, thanks so much for your advice (and for the advice on posting, I appreciate it). You're absolutely right, once you've gone down one path it's imossible to compare it to the other.

Divecat thank you for sharing your experience!