BRCA

In May of 2024 I decided to finally do something I’ve been putting off forever. I got some genetic testing done to see if I carry the BRCA1 gene mutation that my half sister, Bethany, does. Bethany had a double mastectomy after finding an unusual lump but we’ve also had an aunt pass away from breast cancer and her daughter had a double mastectomy as a preventative measure. 

I learned that I do have the mutation. And then I crashed out and decided I wasn’t ready to deal with that. So I put it off again. A few months later I reached out and asked to be scheduled. No one called me back.

This week it came to mind again and I decided I should stop putting it off. So I reached out to the woman who did my testing and asked her again to put in a referral for screening.

Then I missed their call. 

I called back.

"Who do you wan tto schedule with?"

"I have no idea. I did some testing, I got results, I don't know what the next steps are."

"I'm looking at your record and that was over a year ago."

"Yes, I know."

"So maybe we should schedule you with the same provider?"

"I don't think so. She just did the testing. The testing is done. Now I need someone else."

"But it's been a year."

"Yes, I am aware."

Around in circles we went. She said she would do some digging and find out. I got a call back and was so excited to schedule an appointment for the next week! I spent all weekend freaking out about it and then on Monday I got a call back. 

"I'm sorry, I was filling in for someone else and didn't realize for high risk they want you to see a certain provider. Her next availability is in a month."

 I joined a Facebook group for women with this same gene. 

And now I want to crash out and not deal with it again. 

I’m not sure why that’s my reaction. Maybe I do know. It’s my reaction because nothing is wrong right now. I’m healthy. I’m fine. I’m not currently in danger. So why rock the boat?

My options will be to have the preventative surgery, or just closely monitor my body and get scans every 6 months--knowing that the risk is if the scans aren't frequent enough and I do get the cancer, it's an aggressive cancer and at that point I'll need surgery and chemotherapy.

I loathe the idea of going to the doctor and being poked and prodded every six months. I also hate the idea of having a surgery that could completely mess with my body and hormones and change my life forever. But in the Facebook group there are several women who were doing the scanning and are now dealing with the cancer and saying they wish they had just done the surgery. 

I know I’m jumping ahead. I haven’t even had my screening yet or talked to a doctor. But I feel like I have this huge decision to make and no one to talk about it with. I feel trapped with an impossible decision to make. I half hope the screening shows I already have cancer just so the decision will be made for me! 

The worst part is knowing my girls will have to make a similar decision some day because they could have this gene from me. Or they could lose me because this could kill me.