The Breast Cancer Gene and Me
I DID not know I have the BRCA mutation. I did not know I would likely get breast cancer when I was still young, when the disease is a wild animal. I caught it fast and I acted fast, but I must have looked away: By the time of my double mastectomy, the cancer had spread to five lymph nodes.
I had eight rounds of the strongest chemotherapy there is for breast cancer. Two months later, my body still tingles from the blast. My insides are shimmering. I am reconfigured.
I have six weeks of daily radiation coming up. I have scans all the time. I have waiting rooms in my future, full of Golf Digest and Time from four months ago and that same issue of W that’s always there. I have waiting ahead. If you don’t like waiting, cancer is not for you.
I could have avoided all this if I had been tested for the BRCA mutation. All Ashkenazi Jewish women should be tested, because we have it at least 10 times the rate of the rest of the population: Up to one in 400 women is BRCA-positive, as opposed to one in 40 Ashkenazi Jews.
I could have had a mastectomy with reconstruction and skipped the part where I got cancer. I feel like the biggest idiot for not doing so.
The statistics vary wildly, but they are scary at the low end: According to a 2012 article in the Journal of Clinical Oncology, the lifetime breast cancer risk for BRCA carriers is between 56 and 84 percent. From where I am, if you are BRCA-positive, you get breast cancer — because, voilà.
All I know is I have the BRCA mutation most unexpectedly, and, still in my 40s, I had the kind of cancer that meant three surgeries in six months.
I did not know I was a carrier because I do not fall within testing parameters. Most insurance companies cover testing specifically for Ashkenazi Jewish women only once we present with breast cancer. Before that doomed moment, testing is only for women who have a family history of BRCA or who have had breast cancer at a young age, or who have close relatives with the disease.
But that is not how mutations operate. They are sneaky.
I could not have guessed I am BRCA-positive. My mother has not had breast cancer, nor has her sister, nor did her mother. My first cousin — my mother’s sister’s daughter — did have breast cancer at the same age as I did, but not as a result of BRCA.
I did not think of my father in this situation, or perhaps I did not think of my father at all, as I last saw him in 2001. At the time he told me to beware of gum disease, and maybe something else. But I know his mother lived to be an old woman, and she did not die of breast or any other cancer, and my father made no mention of anything going wrong with his sister.
A 2009 Genetics in Medicine study of Ashkenazi women with breast cancer in New York found that about 10 percent carried the BRCA gene — but of these, only 50 percent “had any family history of breast cancer among the first or the second degree relatives.”
I assume that the BRCA mutation comes from my father’s father, and after a couple of generations of silence, it expressed itself through me. This happens frequently. Which is why insurers should cover BRCA testing for all Ashkenazi Jewish women. Protocols for health care professionals must be amended.
“A large percentage of women who have the gene would not have been eligible to be tested,” said Elisa Port, chief of breast surgery at Mount Sinai Medical Center, co-director of the Dubin Breast Center and author of “The New Generation Breast Cancer Book.”
“Anyone can be tested if you are willing to pay for it,” she told me. “For most insurance companies, you cannot get tested just on the basis of being an Ashkenazi Jew. Now the push is toward testing Ashkenazi Jews, because the hit rate is above 2 percent.”
The science is ahead of policy: A University of California, Los Angeles, study published this month found that for every 10,000 Ashkenazi Jewish women tested, 62 breast cancers are averted. In Dr. Port’s view, all women of Ashkenazi Jewish descent should get tested, because “every BRCA patient that develops breast cancer is a failure of prevention.”
According to Force, an advocacy group concerned with hereditary breast and ovarian cancers, an estimated 90 percent of BRCA carriers do not know that they are. That means untold thousands of people in the United States don’t realize they are likely to get a bad case of breast cancer.
The BRCA mutation entered the Jewish community in Poland some 500 years ago, and because the Jews of Eastern Europe lived in isolated communities, they incubated it among themselves. Entire families of women were wiped out by breast cancer, and no one knew why as they buried their dead.
Even though the 14 million Jews of the world today have scattered and intermarried, the BRCA mutation still disproportionately affects Ashkenazi Jews.
Jewish organizations have done too little about BRCA. Hadassah, one of the largest and oldest Jewish women’s groups, has supported research on BRCA, but so much for that. In April, its president, Marcie Natan, released a statement titled “Testing Is Not for Everyone.”
“The test sounds simple enough,” she said, “but understanding what to do with the results can be a complicated, gut-wrenching journey.” Yes, it can. But not nearly so much as cancer.
As Dr. Port said on National Public Radio this week, however early a BRCA-related breast cancer is detected, it is “associated with the risk of death.”
If you have the BRCA mutation, you want to know.
I wish I had done what I did anyway, except without the whole cancer part. I am not sure why anyone with the BRCA mutation would not opt for a prophylactic mastectomy.
Breast cancer is considered especially sensitive because it involves breasts, which are special. I loved my breasts: I posed topless on the cover of my book “Bitch: In Praise of Difficult Women,” so I must have. But I love the new breasts I have now more. I had nipple-preserving surgery, which is often a possibility. My new breasts are more real than real.
I recovered from drug addiction in 1998, and that will teach you to take any disaster as a day in the life. But now I live in the atmosphere of cancer.
According to the PET scan, I am cancer free. I am cured. But cancer plays hide and seek in wunderkind ways. It is the sparkle of dirt at the bottom of the dustbin that never gets tossed.
But I live in an age of miracles and wonders, when they cure cancer with viruses. If I ever meet cancer again, I will figure it out. You see, I am very Jewish, which is to say, I am Jewish: I am undefeated by the worst.
But I would have preferred to skip this. That would have been much better.