Ten years or so ago there was lots of information out there when Angelina Jolie had prophylactic mastectomies. I’m not sure if numbers have tapered off since then, when it was frequently in the news, but many people at the time followed her lead. You can probably find lots of information about that online.
I have a friend whose mother passed at a young age from BC. I can’t remember if my friend was gene tested (I hear so many peoples’ stories), but she and her medical doctors decided they would survey her very closely instead of doing surgery. She had the same exact surveillance I had as a BC survivor (which is ‘something’ every 3 months - alternating mammograms, MRIs, primary care breast exam, and oncologist breast exam). She wound up with invasive cancer anyway, which was caught early (as many are today), but still had to go through treatment (surgery, chemo, +/- radiation) and had the same worries that all invasive cancer survivors have, which is whether it potentially spread to other organs before it was found.
I am not sure what she would do if she had it to do over again. (But if I see her, I will try to ask if it seems appropriate. She is also a nurse so we can easily talk about these things - “for a friend”.)
Something I learned during the course of my treatment is that breast tissue isn’t just where we think it is. It goes way down under your arm and way up above your clavicle. You can ask a breast surgeon about this if you get a consult (which I think you should), but cancers can still occur in that tissue. I think, though, that the chances go way down with breasts removed. (The surgeon would be able to give you exact numbers.) I guess what I am saying is that surgery doesn’t completely eliminate the risk, but lowers it significantly. If you remember our friend feralpeg, she had had a mastectomy and years later she developed cancer in her scar tissue, which became a significant battle. (Which is why BC is called a beast.) So it is definitely a complex issue.
Arm yourself with as much information as you can and then make your decision. I wouldn’t say there is a rush, it is something you can mull over for a while. And definitely get some consults with different surgeons. You may also want to ask about it on the breast cancer survivor’s thread here. Some people there have been through this (if they are still around). PM me if I can be of more help.
Just a word about costs of genetic testing. It’s not all covered by insurance, but my medical group will allow people to make payments over as long as they need in order to afford the testing. They recognize that people might not do it if not. If I recall, last time I had it done it was $600, it’s probably gone up since then. But the good part was that I never got a bill for it, so somehow my insurance covered it. I was asked by my oncologist about doing it again for another gene sequence recently found. I am thinking about it, but will probably do it next time. I really don’t think they will find anything in my case. She did have me take out my ovaries when I had a hysterectomy due to there being a link (perhaps unknown as of yet) between breast and ovarian cancers. That was a tough decision for me and my GYN and oncologist duked it out a bit over that, my GYN wanting me to keep them. I wanted to keep them too, but I didn’t want to have regrets, either. Of course taking those out had other health implications for me so it was six of one or half dozen of another. But the best we can do is try to make good decisions with the information that we have at the time. None of us have a crystal ball, unfortunately. Hang in, Luv!
Then I think about other people who discovered gene defect risk and did they opt into preventative surgery or not and then, later on, was there was reinforcement of a good choice or regret. It's a lot to take in, some cancers are especially vicious so this one is good to avoid, but it's still disconcerting to have a big surgery for a thing that might not ever happen. There is a lot rolling around up in my head, not really landing anywhere but bubbling anyway. I'm way more comfortable with cut and dry sorts of things so this is not in my zone.
