Cancer has settled into our house, with its attendant complexities and choices. Although a newcomer, I have quickly surmised that for those ensnared deeper in its labyrinth, cancer is a full-time job. The shock of the diagnosis is initially numbed by a flurry of appointment-making and form-filling, the latter of which necessitates a foray into the family medical history, which makes for interesting long-distance phone calls that demand at least one of us to demonstrate the tact of a private-investigator and the determination of a geneaologist. What did I expect? Anybody from my part of the world surely understands what Michael Lewis found out in When Irish Eyes are Crying, that
an Irish person with a personal problem takes it into a hole with him, like a squirrel with a nut before winter. He tortures himself and sometimes his loved ones too. What he doesn’t do, if he has suffered some reversal, is vent about it to the outside world. The famous Irish gift of gab is a cover for all the things they aren’t telling you.
The context for Mr. Lewis was the economic crisis, but the same could apply to “the cancer.”
Every new appointment brings another copy of a HIPAA policy and a batch of new paperwork to complete, usually 10-13 pages, one of which requires details of my Family Medical History, therefore requiring a phone call to my mother, my lovely mother, unfairly and completely blindsided by her only daughter’s breast cancer diagnosis. I can picture her on the other side of the world putting the kettle on, knowing she’ll need to sit down with a cup of tea to answer all my questions about the health issues of first-degree relatives and second-degree relatives. Is she certain none of them had breast cancer? What about the time a cousin found a lump? Is she sure it was benign? Well, what was it then? Well, she doesn’t like to ask, but she’ll definitely find out. And then, I put her through the same inquisition for my father’s side of the family.
Why do I do this? I do it because, just like ma, I had fallen for the myth that the women with breast cancer are those with a family history of the disease. Lulled into a false sense of security, we hadn’t even thought it a distant possibility. Now we’re paying attention. The National Breast Cancer Coalition, reports that “more than 75% of women with breast cancer have no family history of the disease and less than 10% have a known gene mutation that increases risk.” It’s definitely sinking in: a risk factor doesn’t cause cancer; a risk factor only affects our chances of getting cancer. That matters. As does the fact that I found the lump “in time.” Possibly – and according to my doctor and the National Breast Cancer Coalition highly probably – the cancer may have been in my body for as many as 7 – 10 years. Did my discovery count as “early detection?” Early detection was the panacea for breast cancer. Right? Wrong. Again. Finding the lump, its presence confirmed by an ultrasound – not a mammogram – is but the beginning of an intervention that will definitely include major surgery and hormonal treatment, possibly radiation, possibly chemotherapy.
But back to family matters and questions of heredity. My physician would prefer not to move forward with just a single mastectomy without knowing if I test positive for the BRCA1 and BRCA2 mutations also known as Hereditary Breast and Ovarian Cancer syndrome (HBOC). Because of its early onset, diagnosed before the age of 50, my cancer indicates an increased risk of HBOC. I agree to the test, knowing the results won’t come for two weeks, knowing that a positive result has implications for other family members, for my darling daughter, for me. A positive result, given the associated increased risks will inevitably lead to a double mastectomy and oophorectomy. Both breasts. My ovaries too.
To keep the fear at bay, I distract myself by refocusing on the matter of a familial susceptibility to cancer. Didn’t my mother have a hysterectomy at a relatively young age? Yes. Finally, a piece of the puzzle! But no. It had nothing to do with cancer. So this plot thickens, and slowly I realize that it really is all about me. Me at a cellular level. The biology behind me. Me and my environment. Me and my choices.
Here’s the rub – I make choices based on what I know, and I know I don’t know how I could have prevented this cancer. I know that knowing my family medical history wouldn’t have prevented it either.