Mar 29, 2019 05:09AM Salamandra wrote:
I'm sorry you have to be facing these questions. Also it's amazing how much more information we can have about our bodies now.
I think you will get a lot of clarity and help from the genetic counselor. They should be able to give you an idea of what the prognosis is with keeping your breasts. I'm not familiar with NBN but when I was tested for BRCA, the genetic counselor told me that many young women were choosing to keep their breasts but do a more intensive surveillance program, with regular MRI screening, and that at that point in the research the outcomes were equivalent to women who had prophylactic mastectomies. That was years ago, and I'm sure there's even more and better information now that the genetic counselor should be able to share with you.
One thing I'd ask her or a doctor about is getting a hormonal IUD. It's one of the few things that seems to offer a slight reduction in risk of ovarian cancer over the long term. That's one of the reasons I kept mine in even after my diagnosis, although my doctors were wary about the impact on breast cancer. But I figured, there's no good evidence it increases the risk of breast cancer and there is good evidence it decreases the risk of ovarian cancer. Ovarian cancer is generally much scarier, I think. What a blessing that your mother and your aunt both survived!
Other than that, maybe bring a friend or have a friend listen in and take notes during your appointment. That way you can be fully focused on the counselor and not worry about remembering every single thing. Also, ask her what to do if you think of questions later, whether you have access to follow up appointments with her, or someone else, and how to do that. I think it's really common to need some time for the information to sink in and all the questions to rise to the surface.
I don't think you're too young to be considering prophylactic mastectomy. I think it's really wise to go in with all options on the table, no matter what your age. But I know for me, one of the reasons it was at the forefront of my head was just because I wasn't really familiar with the other options, and it turned out there were some good ones.
Best of luck, and I'd be really curious what the genetic counselor says, if you don't mind sharing later.