At first, I thought the unexplained bleeding was a breakthrough in my period, but as time went on, it became clear that this was much more than that. The doctors couldn’t figure out what caused it – they ran a number of tests, but the results were always “normal”. In the end, they took it upon themselves to stress out.
Two years later, I moved to Seattle for a new job, and I ended up looking for an alternative medicine doctor. After further testing, I noticed that my testosterone levels were low, which may explain my condition irregular period. To remedy this imbalance, I started hormone replacement therapy. Bleeding improved but not completely gone.
Then COVID hit. My family and I decided to move back to Miami to be closer to our extended family. I had to check in with a local doctor, because I was still in the process of being treated with hormone replacement therapy. Questions were asked about the new patient’s usual intake, including: Do you have a family history of cancer? My answer has always been no. But when I told this doctor that I had been bleeding for four years, she became concerned and asked if it would be a good idea for her to run additional tests on me, including genetic testing.
Through these tests, my doctor found two cysts in my uterus and ovaries that she recommended removal, so I scheduled a follow-up call to discuss surgical plans.
“Are you sitting down?”
I asked kindly.
I was not. I was running around the house trying to multitask. She asked me to find a comfortable place to sit.
“I can’t do the surgery. My BRCA 1 test came back positive.
I didn’t hear anything she said after that. All I remember is having this overwhelming ringing in my ear, just like in the movies. I started copying all the information she was giving me onto a notepad almost on autopilot, without really processing it.
Later, the information sank in: everyone has it BRCA1 gene They have a different and increased likelihood of developing breast or ovarian cancer depending on their family history. Based on my results, I had an 87% chance of getting ovarian cancer, which I likely actually did based on my continued bleeding. I was quickly referred to an oncologist and genetic counselor.
The counselor told me that I may not be the only one in my family affected by this horrific genetic mutation. In fact, this mutation does not skip generations! I inherited this from one of my parents, and my son now has a 50% chance of inheriting and passing it on.
Up until this point, I had never considered that a “family history of cancer” didn’t just mean a cancer diagnosis for a close family member. It meant a thorough understanding of my ancestry and the makeup of my DNA.
I began the mind-blowing task of not only sharing the news of my recent diagnosis with all of my aunts, uncles, and cousins on both sides of my family, but also begging them to get tested because they too could be victims of the condition. I learned that each of my father’s seven sisters had horrible histories with their menstrual cycles, five of them had hysterectomies in their forties, and two had already passed away. Imagine my shock. Imagine how knowing this information at the onset of bleeding could change my results. It would have saved me months of unnamed emotional and physical pain. I never thought to talk to my aunts or cousins about my irregular bleeding because women rarely talk about these things. It looks very personal. You just don’t ask the people in your family if they have problems with their reproductive systems.
But… why not?