Considering Prophylactic Mastectomy

Hi lady6244;

Well, I think my thoughts or comments are this is a very personal decision. Different people would choose differently in your shoes, you know? Everyone has their own personal comfort level with risk, and beliefs about preventative surgeries and so on. Whether they face those decisions or not.

In a case where someone is at high risk, I personally support whatever decision is right for them.

I had a prophylactic BMX on April 24 due to strong family history of aggressive breast cancer/pre-menopausal breast cancer. While I did have dense breasts, I am pre-menopausal so that is pretty normal. I did not have any other atypical concerns (just fibrocystic breasts which is also very normal in pre-menopausal women).  My pathology came back without any malignancies or atypical conditions - just usual hormonal changes like intraductal hyperplasia, fibroadenosis, fibroadenoma and other benign changes.With my particular family history/context, if I had known of aytpical conditions I probably would have been inclined to have done the surgery sooner than I did, but I can't speak as to what I would have done if I did not have that family history. 

ADH does indeed increase your risk (it is not a "benign" condition like my hyperplasia was), but it does not make cancer a guarantee either. Mastectomies are also not a guarantee AGAINST breast cancer, as not all tissue can be removed, or there can even be an occult cancer. I don't know what the risk reduction in the case of ADH is actually, but I do know that amongst those with high risk due to genetics or strong family history the risk reduction is 90-95% of their risk.

I am very happy I did my surgery, and I too was motivated in part by seeing what cancer - both the cancer and the treatments - has done to my family members and the terrible survival odds my family has, but that does not mean it is right for everyone, and I do know of women who have had a much harder time with their prophylactic surgeries, due to complications, body image, ongoing pain and discomfort, and so on. While not a technically "invasive" surgery since it does not cut into the body cavity, it is still a "major" surgery for many physically, emotionally, and so on. I am pretty risk averse, and for me knowing my family history and my concerns about my future health, it was a bit of a "no brainer" to improve my quality of life in terms of my anxiety and concern, and avoid 3-4 decades more of high risk screening ahead of me. I was fortunate to have a very good recovery, and I have no regrets but this is not the case for all women by any means. 

If you are unsure about surgery at this point, you do not have to rush the decision as it IS prophylactic. It took me a few years to be ready for it myself, though I know we are different ages (I am 35 next month) and in different circumstances. Have you talked to your doctors about options such as taking an AI for risk reduction? Are you getting high risk screening such as annual MRI?

It is great, that if you do go ahead with surgery, you have a supportive husband and sister. My husband's support - and agreement with my decision beyond just supporting whatever I wanted to do - was very important to me and good to have through the process. Most of my family, friends, peers, and coworkers were very supportive too. A couple family members did not necessarily "agree" with the surgery and would not choose it for themself, but they still supported ME and my right to choose what was right for me, and were still there for me

Nobody can tell you the right answer - that has to come from you.  It really depends on your tolerance for continuation of your screening protocols, and most likely, given your history, additional biopsies down the road. 

My situation was a little different.  My sister was dx at age 28 and my mother (age 68) does not have BC.  My sister tested BRCA negative and P53 negative.  Beyond that, I have no knowledge of my family history.  I had personal risk factors - extremely dense breasts, ALH, multiple fast growing masses and a pile of benign conditions which made screening very difficult and caused a great deal of pain.  I have no regrets about my decision.  I know that for me it was the right choice.

But there's a lot to consider, and you have the time to do that.  Do your research, ask a lot of questions, and eventually you'll figure out what makes sense for you. 

Best wishes.

lady6244,

You are welcome...please check out the Breast Reconstruction forum if you are leaning that way too! 

Wishing you the best and having peace of mind is a wonderful goal.

I had a PBMX skin and nipple sparing with immediate reconstruction with implants and alloderm Dec. 2013.  I had very dense breasts and was constantly going through tests and biopsies.  My mother, an aunt, a sister and a first cousin had BC.  I saw what chemo did to them, and I didn't want to have to go through that.  My BS recommended a PBMX because of my high risk, and I have had no regrets going that route.  I no longer have that monthly anxiety when I would have to do a self breast exam.  The reconstruction part of the MX takes some getting used to,  but I would rather deal with a little discomfort than have to go through what some women in my family have had to endure.  I am grateful too because the pathology report came showing I had ALH in both my breasts which increased my risk even more.  Good luck with whatever decision you make.

Lady6244 hope your surgery went well and I hope you have a speedy recovery.

I've been following this thread for a few weeks as I was contemplating my own PBMX. As of last week, I have made the decision to go ahead with it.
While my mother did have DCIS and MX at age 55, I have no other family history. My own history is what really contributed to my risk factor--multiple lumpectomies starting at age 26, all benign (fibroadenoma twice, papilloma twice, and now ALH). It's the ALH that really changed the game. 

I consulted with an oncologist about starting tamoxifen or raloxifene therapy. I wasn't crazy about the idea of that, and asked her opinion about surgery. She was very supportive of the idea, and I actually got the impression it might be the safer choice--and not beyond the scope of reason. I mulled it over and returned to my surgeon. I asked her to give me her honest opinion, and she agreed that, in my shoes, she would opt for PBMX herself. I really trust her opinion and her skills, and when I actually felt a sense of relief, I knew that for me it must be the right decision. Yes, I'm a bit nervous about the actually surgery, but so very relieved that I will not have to play the waiting game every six months. And not having to take meds makes it all the better.

I have learned, too, that this is a very personal decision. I'm actually leaning towards "going flat" and that has raised more eyebrows than the PBMX itself. I will consult with a plastic surgeon on Sept. 10, and in the meantime am reading all I can, and frequently visualizing myself with reconstruction and without. Some days, one feels more right than the other, but I'm being careful to not let other people's opinions (mostly unspoken, but I can read body language) sway me too much.

I had DCIS in left breast in 2011. This Spring/Summer i had a scare which turned out to be a papilloma in my left breast found via a mri biopsy.I was told it was small and mostly removed via the biopsy. I now am in perimenopause for about 18 months. I am still considering a BMX due to my anxiety that increases the 3 months or so before my yrly exams. My cancer was ER positive. I found out I cant take hormones to alleviate any of my menopausal symptoms. Im wondering if I were to have the MX would I then be able to take hormones since the ER positive aspect wouldnt be a concern anymore? What are the % chances of having a recurrence or a new cancer AFTER a MX ?

thanks lilith... found out that i cant take hormones regardless of my treatment do to the ER positive. Im coming up Feb.10 on my next mammogram, so my anxiety is starting to rev up. Im still considering the recon with lift/implants or BMX....but still concerned about lack of sensation...has anyone had a lift and do you still have nipple sensation after one ? Im also wondering about getting the implants with having a tiny pappiloma that has no external symptoms?