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Amy Moore-Benson has an unusual and strong family history of breast cancer. Amy and her younger sister Jennifer hope that one day, genetics research will break their deep, familial pattern of cancer. (Amanda Lowe/The Globe and Mail)
Amy Moore-Benson has an unusual and strong family history of breast cancer. Amy and her younger sister Jennifer hope that one day, genetics research will break their deep, familial pattern of cancer. (Amanda Lowe/The Globe and Mail)

The DNA Dilemma

Fighting cancer one question mark at a time Add to ...

The morning after I discovered the hard, round mass far down the side of my left breast, I arrived unannounced at my doctor’s office. The lump was small but it was there, and I needed my doctor to give a reasonable explanation for its appearance. After an hour in her office, I left with assurances and appointments for a follow-up ultrasound and MRI, and with the beginning of a cold certainty that cancer had caught up with me. This hard little pea, as I’d come to think of the mass in the hours since I’d found it, had rolled down through my family: from my grandmother, to my father and now to me.

It was February, 2008, and I would learn a week later, after the tests and scans rapidly moved this discovery from concerning to urgent, that it was invasive-ductal carcinoma. Or, as a wonderful medical fellow from New Zealand would soon explain to me with a warm smile on his face, “your garden variety breast cancer.”

I was 39. A mother of three children. A woman who ran a business she loved. When I got the call from my doctor confirming the diagnosis, the floor tilted wildly, and a lot of things must have gone through my terrified mind, but “Why me?” wasn’t one of them. In fact, something quietly slipped into place, like a knot cinching on a thin cord. “Why not me?” was more to the point.

My two sisters and I had by this time been in rigorous screening for breast cancer for several years – ever since my father was diagnosed with intra-ductal carcinoma and underwent a mastectomy on his left breast. Male breast cancer is rare, accounting for only about 1 per cent of all breast cancers. What made my father’s situation all the more concerning is that his mother died of metastasized breast cancer when she was just 34, leaving behind her only child, a 21-one-month-old baby. We had grown up with the tragic story of my grandmother’s early death; my father’s diagnosis cast it – and the question of what might be lurking in our genes – in a new, sharper light.

My father’s doctors believed he was probably carrying one of two recently discovered genetic mutations for breast cancer – BRCA1 and BRCA2 – and suggested genetic testing. With three daughters, my dad felt an urgent need to know what dangers lay ahead for us. Cancer seemed to be circling my family: my sister had Hodgkins lymphoma when she was 18, and, though we didn’t know it yet, my father would within three years also be diagnosed with prostate and skin cancer. Could a blood sample and some DNA analysis solve the mystery of why we seemed predisposed to cancer? At that point we could only hope.

We didn’t know how we’d cope with knowing the results of my father’s genetic test – how would we feel knowing we had a mutation that drastically increased our risks for breast cancer? Would it leave us with a sense of being more protected or more vulnerable?

In the end, the results brought more uncertainty: My father didn’t have the mutation, and we were left wondering whether that news was reassuring, or simply evidence that science didn’t yet know what was causing my family’s cancer.

But our brains have a way of protecting us from fear, especially abject, undefined fear like the risk of something like cancer. And I felt wrapped in a protective shield, cushioned from threat by some sort of vague law of probability: Cancer had chosen my sister and father, not me. I wasn’t going to get sick.

My daughter was 16, my sons, 7 and 2, when I got my diagnosis. The conversations I had with my daughter around the realities of what was happening were filled with facts and reassurances, optimistic statistics and medical information. When I spoke to my sons, I told them about this strange thing the doctors had found in my breast. Like a pea, it was growing there quietly. But if I left it alone, it would continue to grow and could eventually make me sick. We all decided that the best thing to do was take the pea out, take some medicine and be done. And that’s what I did. Like standing at the opening of a long, dark tunnel, I put my head down and blasted through as fast as I could to reach the light and air at the other end. Over the course of the next 11 months, I underwent a lumpectomy, four rounds of chemotherapy, a double mastectomy with reconstruction, and a laparoscopic salpingo oophorectomy (removal of my ovaries and fallopian tubes, because I now worried about ovarian cancer, sometimes linked to breast cancer).

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