Why Did I Get Genetic Testing?
It’s been a week since I shared my genetic testing results and subsequent decision to get a preventative bilateral mastectomy...
I decided to share because I felt completely isolated in this experience. After, I was amazed by the outpouring of support I received and SO surprised by all the friends, friends of friends, patients, strangers, etc. willing to share their own stories with me.
I believe medical information is private and understand not everyone is comfortable sharing. Maybe my sharing will help others gather information while not having to put themselves out there? 🤞
On that note, I’ve gotten a lot of questions both on/offline. I’ll be answering them on Instagram in short videos to keep the information flowing for those it might help.
Question 1:
What made me get tested? Was I suddenly seeking this information?
The answer is not really. I KNEW I had a strong family history with my mother’s side with my grandmother having ovarian cancer, my aunt having breast cancer, and my aunt recently died from pancreatic cancer last year. My doctors have always been aware of this.
The difference was that I entered my medical history via a computer intake system this year, and that alerted me/my doctor that I needed to meet with a genetic counselor. I thought the out-of-pocket price of around $250 was worth getting the information, so I went. They tested for 90+ genes. I was not nervous– I figured the odds were SOMETHING would pop up with a slightly increased risk...but I was not expecting to be positive for a gene with such a high cancer risk. I am the first one in my family to have this known gene.
Other questions I’ve received that I’m hoping to answer in the future:
What made me decide to move forward with preventative surgery vs. watchful waiting?
Will I be getting a hysterectomy as well or getting my ovaries out?
How did I tell the girls? How are they taking it?
I hope to talk about this not only to alleviate isolation but also because this decision has everything to do with Soraya, grief, and my family– which is exactly the purpose of this account.
What other questions do you want to know? I’m an open book 📖