A Difficult Inheritance

My cancer journey began in 1986 at my one-year checkup after the birth of my daughter Kirtley, when I showed my obstetrician a lump in my right breast. Within weeks I had had a mastectomy and begun chemotherapy.

Nights of insomnia found me consumed with fear of dying before Kirtley could remember me — and visions of her as a miserable adolescent who, despite having a loving father, was filled with feelings of abandonment.

By the time Kirtley turned 5, I was attending a support group to cope with my fear of recurrence and writing a book about breast cancer. I began talking about cancer in the past tense.

But in 1991 cancer would be in my present once again.

In late 1991 my mother, Mary Stevenson LaTour, was diagnosed with stage 4 breast cancer, and I discovered something worse than being diagnosed with breast cancer — standing beside my mother while she heard the results of her pathology report, including that her cancer had already spread to her lungs. I knew what it meant; Mom didn’t. She died the following May.

Around the time of my mother’s diagnosis a whole new breast cancer language was beginning to appear. It began in 1990 with the discovery by Mary-Claire King, PhD, of the BRCA1 gene, which was quickly named the breast cancer gene because of the numbers of women who were diagnosed with breast and ovarian cancer when their copy of this gene was mutated. In 1995 King discovered the BRCA2 gene, and in 1996 came a commercial test that could identify the mutated genes.

Up until then, I had assumed that the same random environmental exposure that I blamed for my breast cancer caused my mother’s. My family tree showed cardiac disasters on limb after limb — but my mother and I the only cancers. Could I carry one or both of the mutated genes that turns breast cells into time bombs? Cancer suddenly went from past tense to future tense. I looked at my daughter in abject terror, wondering whether I had given her more than my wacky sense of humor and blue eyes. I felt anger, guilt and fear. Not my daughter!

I read and examined writing from the experts about being tested for the breast cancer genes. Their consensus was that my risk was low. Fewer than 10 percent of women with breast cancer had one of the mutations.

But, what if? I monitored myself carefully for symptoms of ovarian cancer, but the bigger question for me had to do with Kirtley. If I have the genes, she will need to be tested, too. But when? How does a mother explain options like a prophylactic mastectomy to a preteen? How do I lower Kirtley’s overall risk for cancer?

Kirtley ice-skated competitively while in her teens. I sat for hours with all the other moms watching her spin and jump. But I bet I was the only mother who watched her daughter do an Axel and, instead of visualizing Olympic gold, thought about a study showing exercise during adolescence was an important factor in staving off breast cancer.

By 2002 my concerns had lessened. Then my brother, Larry, learned he had prostate cancer at age 48, considered an early onset. He found it early and had surgery, and I was still feeling that there was good reason to believe I shouldn’t worry about this new development since there was little to link prostate to breast cancer. At the same time, new statistics showed that only 1 in 400 women has either of the breast cancer mutations with the exception of women who are of Ashkenazi Jewish heritage. For them the risk is 10 times higher.

I waited for science to give me more details. Kirtley left for college.

In addition to staying informed, I requested from my cancer cen­ter’s genetic counselor the packet of information on getting tested. It reinforced my sense that my risk was small. But on my next visit to the cancer center for a checkup, I ran into the oncologist who specialized in hereditary cancers. We chatted and I asked her opinion on testing. “You were under 40 when your breast cancer was diagnosed; all women diagnosed under 40 should be tested,” she said.

I had given myself until Kirtley graduated from college to be tested, knowing it was highly unlikely she would develop breast cancer before then. But in fall 2007 my mammogram revealed ductal carcinoma in situ in my left breast. I had a mastectomy and immediate reconstruction for the stage 0 diagnosis. I now had bilateral breast cancer, increasing the odds that I had the genes.

I called the genetic counselor a week after surgery to schedule a meeting, the first step in considering testing. Becky Althaus, RN, PhD, CGC (certified genetic counselor), began by assessing my risk; she outlined the risk factors for breast cancer in the general population, including aging, family history, no children or first birth after 30, early menarche, late menopause, abnormal biopsies, smoking, being overweight, alcohol use and sedentary lifestyle. Then she explained the risk factors for BRCA1 and 2 mutations: ovarian cancer at any age, male breast cancer at any age in the family, breast cancer under the age of 50, bilateral breast cancer, Ashkenazi/Eastern European Jewish descent, or a relative already identified as having a BRCA1 or 2 mutation. I had a few of the breast cancer risks on the first list for the general population, and by adding bilateral breast cancer to the fact that I was under 50 when diagnosed the first time, Althaus calculated my risk of having a BRCA mutation at 21.3 percent. We drew blood and off it went to be tested.

The letter that arrived at the end of November indicated I was negative for the BRCA1 and BRCA2 mutations. But it continued: “With your bilateral breast cancer and your brother’s prostate cancer at such young ages of onset in your family, it appears that there may be some genetic contribution to the development of these cancers.”

I asked Althaus for a better explanation and she referred me to the pie chart about breast cancer in my testing book that shows three colored wedges. Hereditary breast cancer, where a gene has been identified, accounts for 7 to 10 percent of breast cancer diagnoses. Familial breast cancers, where there is clearly some genetic component not yet uncovered, account for 15 to 30 percent of cancers. The remaining breast cancers fall in the sporadic cancer wedge.

I landed in the familial wedge, which means there may be a hereditary component but the mutation or mutations have not yet been identified.

I am relieved, of course. I didn’t want to have the BRCA mutations.But in a strange way I am glad we landed where we did. No definitive genetic connection might have meant that Kirtley would stop worrying — and caring. Even so, as it stands, I won’t ever be thinking of cancer in the past tense again.

Kathy LaTour is editor-at-large for CURE Media Group.

To find a certified genetic counselor in your area go to www.cancer.gov/search/geneticsservices/.