25F BRCA2+
FYI: primarily a venting post, with lots of embedded questions.
I received my results 3 days ago and I am overall in problem solving mode rather than panic mode. I know I am in a privileged position to know about this at such a young age and I do not take it for granted. That said, I feel overwhelmed with the amount of decisions I am facing.
I don't want cancer and I want to do everything right. I have always been healthy and have minimal experience navigating the healthcare system. I have moved around a lot so I have never even had a primary care doctor. After this result, I now need a whole team of oncologist, surgeon, gastroenterologist, gynecologist, etc. They all need to work in tandem on a relatively niche problem. How does one even go about finding this? Who do I call, where do I look, what do I do? Am I about to find out how expensive medical care can get? I have never felt so lucky to have a high paying job.
And then there's the mastectomy and ovariectomy. I am quite inclined to both, on a rational level, but this doesn't make these decisions that much easier. For the mastectomy, it is once again a super niche procedure, in my understanding. Boob jobs are common, breast reductions are common, life-saving mastectomies are common, but preventative bilateral mastectomies with reconstruction are primarily for people with these kind of mutations. Who specializes in these? Who can I trust with my boobs? Should I wait? If not now, then when? For the ovariectomy, I don't know what timing is best. I don't want cancer. I also don't want surgically induced menopause. I feel lucky I don't want children, but also what the fuck do I know, as I am 25 years old? Is this diagnosis only further biasing me against child bearing, effectively preventing me from deciding for myself?
Any rational advice in navigating these decisions is welcome. I want to approach this productively, but feel a bit overwhelmed. I am trying to become more knowledgeable and read at least the seminal BRCA papers, but my educational/professional background is data science and math... I am not trained in any medical science. That said, I have to keep making an effort, as no one will ever care about my life as much as I do.
Edit: removed family history background because I felt too exposed and it was just me venting anyway...