Afraid my cancer would come back, I opted for genetic testing to learn of my future risk
When my boyfriend and I first started dating, we’d talk a lot about our pasts; mine included recently completing more than a year of treatment for breast cancer. He was about eight years out of the military. We found many similarities in our paths, but when he spoke about being discharged and driving off base for the last time, knowing he wouldn’t have to go back, I paused.
I don’t have that.
There are no guarantees that someone who has thrived through cancer will never get cancer again. As much as your doctors will pat themselves on the back and say, “We gave you the best treatment there is,” they have no way of knowing what comes next. The course of treatment that was laid out by my oncologist was the best for me at that time, but there’s one piece of the puzzle that does not care what treatment I had on the front end.
After my initial diagnosis in 2010 and upon learning that I was of Ashkenazi (Jewish families that originate in Eastern Europe) descent, my oncologist recommended that I go for genetic testing to see if I was BRCA1- or BRCA2-positive, as these two gene mutations are more common in Ashkenazi Jews than other origins according to the National Cancer Institute. Materials from the NCI explain that mutations in these two genes in women mean that their risk of developing certain types of cancers, specifically breast and ovarian cancers, are higher than others.
Before this testing, it was recommended that I receive a single mastectomy, but if my genetic testing had come back positive for these two mutations, that might not have been the case. The test came back negative, and we all breathed a sigh of relief and continued with my original treatment plan. I’d get asked frequently, “Are you BRCA-positive?” and I’d say no, but after a while, you start to wonder, are there other mutations that I don’t know about?
I started pushing the subject of genetics on my last oncologist visit (I go every six months for blood work) and he recommended a geneticist in Washington, D.C., for me to meet with for an informational session.
Recently, I sat in the geneticist’s office and she showed me the family chart that she had created based on all the information that I had given her regarding my family history: My mother had triple-negative breast cancer, my two uncles died from pancreatic and lung cancer. Our family history is peppered with the disease, yet she failed to see a cohesive link. What she did see was that the BRCA testing that I had done in 2010 was essentially out of date.
As with cancer treatments, there had been advances in genetic testing. The question was, “Did I want to know?”
I had lived in this world where I have been told since the end of my treatment in 2011 that I was cured. It was all over. But what if it isn’t? What if the newer tests for other mutations in the BRCA 1 and 2 genes showed that I am more likely to develop ovarian or breast cancer again? What if I am genetically predetermined to be at a higher risk for colon or stomach cancer?
She explained to me my options: If the new tests come back positive for other BRCA 1 or 2 mutations, I could start getting scans every six months in between my yearly mammograms or I could opt to have another mastectomy on my right breast. I didn’t find either option particularly appealing.
“What about ovarian cancer?” I asked her.
“There is no mammogram for ovarian,” she replied. “Most women choose to have their ovaries removed.”
This informational appointment was heading downhill quickly.
The geneticist gave me two options; I could go home and think about it, or I could spit in the tube, activate the enzymes that stabilize my DNA and wait two weeks. Being the impatient person that I am, I started spitting.
It was a long two weeks. I’d go from, “Whatever, I’ll just get another boob job,” to “But I don’t want another boob job,” to “I’m not ready for menopause,” to “No more PMS could be cool.”
I received an email from her two weeks later. “Good news! No mutations!” I breathed yet another sigh of relief.
I understand that many people would not have gone down the same path. Your body is your body. There’s nothing you can do to stop your genes, and you can’t change your DNA, so why spend your life worrying? To this I say: When you don’t get to drive off into the sunset and never look back, you might as well at least drive around with all the maps you can get your hands on so you know where you are going.
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Originally published on SheKnows.