When I was 12 years old, my maternal grandmother, Loretta Ciccone, died from her second bout of ovarian cancer. She was first diagnosed in her mid-forties. The loss of the Ciccone matriarch as she was just starting her 5th decade of life absolutely devastated my mother, aunts, and us grandchildren. It was my first encounter with loss and grief, and I didn’t really know what to do with myself or my emotions. I would spend the next several years dealing with her death. About a year after her death, I found myself selecting ovarian cancer as my independent study topic in English class. With zero interest in science and no real understanding of genetics, the only thing I remember learning from that study was that ovarian and breast cancer could be traced to the same gene. I think I ended up changing topics since I was more obsessed with the impact cancer had on my family than the actual topic of cancer. This story would not end with me turning into a scientist to fight cancer.
Fast forward ten years, and my aunt Denise is fighting her battle with breast cancer, at the age of 45, and with three little kids. Not long after her diagnosis, my mother, Denise’s twin sister, followed suit with her breast cancer diagnosis. Thankfully, my mother was able to knock cancer back with a double mastectomy and tamoxifen. My aunt Denise died mere months after that.
That rudimentary dabble in genetic research from 8th grade flashed in my brain as if it was truth, a foretelling perhaps. I ignored it, not wanting to confirm or deny its existence in my family.
After aiding my mother through her mastectomy and the painful and difficult transition period of taking on the parental role for her niece and two nephews after aunt Denise died, I moved on with my sometimes destructive, sometimes ambitious twenties. My mother ended up testing positive for that “cancer gene” I had read about. She urged me to get the test done as well, but I didn’t want to know. I knew I would struggle with the idea that a positive test result would not equate to a cancer diagnosis. I preferred ignorance, for the moment.
It wasn’t until I had trouble getting appropriate medical care that I felt compelled to take the genetic test. One gynecologist refused to write me a prescription for oral contraceptive as she said “estrogen was food for breast cancer”. Another told me adding estrogen through oral contraceptive was simply a drop in the bucket if I did have the gene, and that not only would she prescribe it, but she would order my first mammogram. I was 27 years old. I showed up for my first mammogram only to have the radiologist refuse to perform the procedure since I was not yet 30 and I had only a family history of breast cancer, not a confirmation of the gene. Out of frustration, I immedieatly scheduled genetic testing at MD Anderson Cancer Center.
I was tested for the BRCA 1 and BRCA 2 gene mutation. I tested positive for the same gene mutation as my mother: BRCA 2. I learned that it is not a gene that predisposes me to breast and ovarian cancer, but rather a deleterious mutation that means my body will not produce the protein necessary to stop tumor growth in these, and other, areas of the body. A positive test result would lead to a recommended course of action for prevention and early detection of breast and ovarian cancer. At the time I was tested, my lifetime odds of developing breast cancer was somewhere around 85% and 50% for ovarian cancer. I think those odds have gotten slightly better since 2007. It was recommended that I have mammograms annually, breast MRI annually, trans-vaginal ultrasound every six months, as well as CA-125 blood test every six months and physical exams. It was also recommended that I have a preventive double mastectomy by age 35 and remove my ovaries by age 40. Those recommendations have not changed, however.
At the age of 27, I was nowhere near married, settled, or in the family way. Suddenly life felt very short and I had to fight the anxiety within me that told me to speed everything up. I couldn’t leap into marriage with my current boyfriend just because I was running out of time to have kids. I also had to remind myself that these were only recommendations, that I had to just live my life. But I also couldn’t push the thought of not wasting anymore time out of my mind. How could I? I would spend the next five years driving to Houston’s medical center for my semi-annual cancer checks. They would always ask me if I had given the surgeries anymore thought with each visit. Each visit meant time was moving and my odds were increasing. I mean, with my odds, it was not a matter of IF I would get cancer, but WHEN. My screenings were not like a going in for a check up, generally expecting everything to be A-OK. I always had a tinge of fear at each visit that there might be something there…
I was 32 years-old before I would be marry that boyfriend who was by my side through the emotional head-jacking that genetic testing would have on me. Yeah, the threat of cancer didn’t light a fire under him at all! A few months before our wedding, I went in for my semi-annual breast check-up. Only this time, they called me back for a biopsy and ultrasound. I held it together pretty well, but once they started the biopsy procedure I struggled to hold back the tears. The gut-wrenching anxiety that this was the beginning of my cancer story, the beginning of my ending, could not be contained.
Thankfully, the biopsy revealed nothing of significance, and my life took off with barely a moment to breathe for another five years. I got married, started a business with my husband, and had a couple of amazing kids. Life was good, and challenging.