I was told I had a genetic mutation and Professor X did not come to my house. I’m torn up about it.
What happens when you have BRAC2? Nothing, really. Let me explain.
When my mom found out she had BRAC2, I went with her to her genetic counseling session. It was at the Levine Cancer Institute. I do not do well with anything medical. As soon as I saw other women in the waiting area — some with no hair, I started panicking and crying. Could this be real? It was just the gene, not the cancer… but definitely, the cancer was coming to get us, for sure!
During the genetic counseling, we drew out our family tree and identified all those who had or may have had cancer. My grandparents are from the Philippines. Even if they had the best medicine, back in the day, there was no telling if someone died from breast (or ovarian) cancer. So, we did a lot of guessing. During the visit, they talked about my mom’s options and set her up with a surgeon. The counselors convinced me that I needed be tested as well. Did I want to know? Better question – Did I want to be stuck with a needle?!
Once they convinced me the test would only involve mouthwash and spitting, I was on board. A week later, I got the call. It went something like this:
Counselor: “I’m sorry, you have the gene… are you okay?”
Me: Oh, I do? Good to know. I’m fine!
Counselor: Are you sure you’re okay?
Me: [cold sweat] Yes, of course. This is going to be great. I gotta get back to work. Thanks for calling. Byyyyeeee!
The weeks that followed, I was buried in anxiety. I told a few people like it was no big deal. “Yeah, I have the breast cancer gene. At least I know now so I can… well, so I can know. Because knowing is half the battle…?”
Now, you know. What’s next? Once I had my genetic counseling session, I was a bad patient.
I met with a breast surgeon, had one mammogram, and fell out of the plan they set for me. I think I was lost in the “system” and I made no effort to get myself back into it. Plus at the time I was a new mom, we were building the foundation of our company, and I was in a little bit of denial.
A good patient would follow a plan each year that includes a test or in-person exam every THREE months. EVERY THREE MONTHS I was either going to have a breast exam, a mammogram, another breast exam, and an MRI with dye (that means needles).
The point of each one of these checkpoints is to make sure cancer is not present. To me, that’s 4 times a year I’m waiting to hear bad news.
Did I mention, my chances of getting cancer are 85%? I’ve never been a gambler.
Just this year, I entered myself back into the “system” with the hopes I could trade that MRI (needles, remember the needles?) for a nice ultrasound every year (a suggestion/trickery by my regular gyno). Unfortunately for me, my surgeon gave it to me straight and put her foot down. She really brought me down to earth and gave me my options.
“Look, if you’re so anti-plan, you should think about having the prophylactic mastectomy surgery. You have options for reconstruction. You will reduce your chances of getting breast cancer to lower than the regular population. Did I mention there’s a type of reconstruction that includes an insurance-covered tummy tuck?”
She sold me. I have the power to take control of my life and make this decision. Why would I follow a plan waiting for bad news when I could prevent my odds and never have another mammogram or MRI (needles)?
I left and agreed to take a couple steps. I would meet with the plastic surgeon, schedule my one and hopefully only required MRI and call my insurance company to find out how much the surgery would cost.
On March 13, 2017, my friend Cecilia died from colon cancer. She was only 32 years old. From diagnosis to death was a long, hard 18 months. She gave me the strength I needed to make my decision. How could I sit here not doing anything, knowing my odds and having the means to lower them? It seems almost insulting not to take action knowing how much she would have given to have the chance to grow old. I couldn’t peace out on the world and leave my daughter without a mom because I selfishly was afraid of surgery (and recovery).
Knowing and doing are two different things. I chose to use my knowledge to DO something. Follow me here on the blog to keep up in real time!