Getting a positive BRCA2 (mutation in a gene that puts you at a much higher risk for getting cancer) result has changed my life. Between my mom’s current battle with ovarian cancer, and my sister and my positive BRCA results, I can say without exaggeration I think about cancer every single day.
I wonder if deadly cancer cells are quietly destroying my healthy cells. Morbid right? I wish I could make the thoughts go away. I have to remind myself daily – you don’t have cancer, you may never get cancer. But, my mind still wanders to what if?
I’ve seen more doctors in the last two months than I’ve seen in my whole life. All of them recommend getting a bilateral mastectomy and a bilateral salpingo-oophorectomy or BSO (removal of fallopian tubes and ovaries). If you do these things you basically (hopefully?) get yourself out of the high risk category. Seems like a difficult, but obvious decision right?
It’s not, for me anyway.
When I was waiting for my DNA results to come back, I decided if it came back positive, I would aggressively counter it with the preventative surgical options. It’s easy to make that decision when you secretly believe your test will come back negative. But, it didn’t and now I’m not so sure.
I will be getting the BSO surgery because at this time there are no reliable screenings for ovarian cancer and by the time you have any symptoms it’s usually pretty advanced. Maybe because I’m watching my mom battle ovarian cancer this decision was easier. I don’t want to go through what she’s going through.
But, the mastectomy decision is much more difficult. It feels so drastic to me. I’ve seen (and spoken with) so many brave, warrior BRCA women on Instagram who have opted for the full preventative surgeries and I’m awed by their courage and I respect their decision and resolve. But, for me, my mind keeps screaming – I don’t have cancer! Why do I have to do this?
The surgery is not easy, the recovery is long and painful and like any surgery there can be complications afterwards. But, it does lower your risk of getting breast cancer – by a lot. It seems to give most women some peace of mind to move on and live their best life. That’s not a small thing and obviously it appeals to me.
All that being said, I’m leaning towards surveillance screenings twice a year (MRI and mammogram). Many people don’t choose this option because basically you’re just trying to catch the cancer early when it’s easier to treat. But, twice a year you’ll be waiting for results to hear if you have cancer. Can I live that way? Do I want to? I don’t know.
If I get a result back that shows cancer I’d immediately opt for the mastectomy because in my mind the decision would be taken away. But, will I spend every day stressing over cancer? I don’t want to. I want to live a full life and I appreciate my health now more than I ever have before.
I haven’t made a final decision on the mastectomy, but for now I have an MRI scheduled for November and I’ve already had one clear mammogram. I suppose I’ll see how screenings feel mentally and go from there.
So now I’m focusing on the surgery I will be having. I’m waiting for insurance authorization for the consultation and BSO procedure at City of Hope. It’s also an odd feeling to spend so much time in hospitals and centers where people are vigilantly fighting cancer and I walk in healthy with a report showing I’ve got some obscure mutant gene. Their bravery and battle makes my indecision and angst feel so weak and lame. I’m trying to prevent what they’re going through. I should just stop my whining and be thankful science has given us the knowledge and ability to be cancer-free while making preventative choices that could save our lives.
Anyway, I fully realize this isn’t the most fun blog post I’ve ever written, but if one scared and confused person stumbles across it and feels less alone than it’s worth it.