At first, I thought the unexplained bleeding was a period breakthrough, but as time went by, it became clear that this was much more. Doctors couldn’t figure out what was causing it—they did a number of tests, but the results always came back “normal”. Ultimately, they chalked it up to stress.
A couple of years later, I moved to Seattle for a new job, and ended up seeking out an alternative medicine doctor. After running even more tests, she noted my testosterone levels were low, which could potentially explain my irregular period. To remedy this imbalance, I started hormone replacement therapy. The bleeding got better, but it didn’t go away entirely.
Then, COVID hit. My family and I decided to go 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 my hormone replacement treatment. I was asked the regular new patient intake questions including: do you have a family history of cancer? My answer was always no. But when I told this doctor I’d been bleeding for four years, she became concerned and asked if it’d be okay that she run additional tests on me, including a genetics test.
Through these tests, my doctor found a couple of cysts in my uterus and ovaries which she recommended removing so she scheduled a follow up call to discuss surgical plans.
“Are you sitting down?”
She asked kindly.
I wasn’t. I was running around the house trying to multitask. She asked me to find a comfortable place to sit down.
“I cannot perform the surgery. You tested positive for BRCA 1”.
I didn’t hear anything she said after that. All I remember is there was this overwhelming ringing in my ears, just like in the movies. I started to transcribe all the information she was giving me on a notepad almost on autopilot, without really processing it.
Later, the information sunk in: Everyone with the BRCA1 gene has a different, elevated probability of getting breast or ovarian cancer depending on their family history. Based on my results, I had an 87% chance of getting ovarian cancer, and likely already had it based on my incessant bleeding. I was quickly referred to an oncologist, and a genetics counselor.
The counselor informed me that I may not be the only one in my family affected by this dreadful gene mutation. In fact, this mutation does not skip generations! I had inherited this from one of my parents and both of my sons now have a 50% chance of also inheriting it and passing it on.
Up until this point, I had never considered that “family history of cancer” didn’t just mean a cancer diagnosis for someone in my immediate family. It meant thoroughly understanding my ancestry and DNA makeup.
I began the mind-depleting task of not only sharing the news of my recent diagnosis with each of my aunts, uncles and cousins on both sides of my family but also begging them to get tested as they too could be victims of this condition. I learned that every one of my dad’s seven sisters had a terrible history with their menstrual cycles, and five of them had hysterectomies in their forties, two were already deceased. Imagine my shock. Imagine how knowing this information at the onset of my bleeding could have changed my outcomes. It would have probably saved me months of unnamed emotional and physical pain. I never thought about talking to my aunts or cousins about my irregular bleeding because women rarely talk about these things. It seems too personal. You just don’t go around asking people in your family if they’ve had issues with their reproductive systems.