My BRCA Journey

We have all had those situations when you go to a doctor’s office and they ask for family history. Up until 2005 or so, I never had to add much to that section. I went for a check up with my gynecologist and she started asking for clarification as soon as she saw what I had written – Paternal Grandmother – Ovarian Cancer, Paternal Aunt – Breast Cancer, Father – Prostate Cancer and immediately asked if I had heard about BRCA? I am an odd ball. I remember things from the news five years ago and random facts. I remembered hearing about it on a cancer special and immediately got worried.

She asked if I had anyone else with cancer in our family – I replied that my dad’s cousins had cancer and that they were in remission. Her task for me was to go home and ask for more information. This is when everything got very stressful.

My father handed me a large envelope and explained his cousin had mailed us a stack of information that she tested positive for. Yes, positive for the BRCA2 mutation. I immediately emailed my doctor who put in a referral for a genetic counselor. I completed an online course and had to do a mental evaluation. I took my sweet time. I was afraid.

During this time I let other family members know – one of which tested positive and immediately went into getting whatever she could have done preventatively as she had a very high chance of breast cancer based off both sides of her family. She had a double mastectomy with reconstruction and inspired me.

Truthfully, I started this process when I was 23 or 24 and waited until I was 31 to finally do the simple blood test. Since my cousins had sent me their genetic testing I was able to get that exact genetic marker tested. My father and other family members had already tested positive. I vividly remember being at 24 Hour Fitness off 101 and walking out of the shower with the decision made that I would reach out to the genetics department and be tested. I was tested at the end of December 2016. I was mentally prepared for a positive result.

January 2017 brought my birthday and lingering stress. I was driving a client to an appointment and my caller ID showed Kaiser. I answered and was told they needed to speak to me when I was alone. Once I got back to my office I called back and said, “So you’re letting me know I am positive for the BRCA2 mutation right?” it was confirmed and immediately I was scheduled to meet with a general surgeron assigned to patients with genetic mutations, a gynecologist, an oncologist, and even scheduled for an urgent mammogram. I also met with a lovely genetic couselor who put me at ease, even if she was giving me my percentages for cancer. 

Awkwardly enough, the oncologist assigned to me had been my grandmother’s oncologist and had recently met with my father who’s cancer had metastasized. She was the oncologist who had told us that he had not actually been cancer-free. He was on hormonal replacement drugs and they just stopped working, so cancer began spreading. I pushed for a BRCA test and sure enough he was also positive, which we had expected. I had met this doctor three weeks prior and she grabbed my hand and was very sweet and encouraging to me. 

Couldn’t be all fun and no games – there I was in the surgical building and my brand new gynecologist decided I needed a full pelvic exam before heading over to my mammogram. Hello full service. Haha. She also explained i would need to alternate Breast Mammograms and Breast MRI’s every 6 months, have a trans-vaginal ultrasound every 6 months, and since Ovarian Cancer is hard to catch early – CA125 blood test within 10 days of having my period every 6 months. (This has since changed, I don’t do a CA125 or a Trans-Vaginal Ultrasound anymore for me). 

I explained to the medical professionals jammed into the small exam room that I wasn’t ready to have a double mastectomy or a hysterectomy yet. We agreed to them checking in periodically to see how I felt following my exams.