I have the 'cancer gene' but don't have kids yet. Now what?
LatestAngelina Jolie was glad she faced mastectomy and ovarian removal after she’d had her children. I’m 33, childless, and still facing down my grim family legacy.
I’ve got cancer in my family tree like the Jackson family has pop stars. My grandmother and her two sisters collectively endured six bouts of breast and ovarian cancer, and only my grandmother survived. After enduring cancer in both breasts as well as her ovaries, she had to watch her daughter—my mom—suffer breast and later thyroid cancer.
After my mom’s cancer, her sister and female cousins got wise to the family curse. They removed breasts, and most of them removed ovaries—even in an era before the BRCA genes had been identified—rather than risk the illnesses that traumatized, maimed, or killed every member of the generation that came before.
I cannot imagine my life without cancer. My mother was first diagnosed at age 30, when I was only eighteen months old. So naturally, I grew up assuming that I might only live until the age of her first diagnosis. In the early oughts, my mother took a simple blood test that traced the horrible suffering of our family to a tiny, altered piece of DNA called BRCA1. As her child, I had a 50 percent chance of sharing that gene.
At age 27, as it turned out, I did have it all—a new husband, a new career as a journalist and author, and sadly, the family genetic mutation. It dramatically raised my chances of developing breast and ovarian cancer at unusually young ages. A typical woman has a 12 percent chance of developing breast cancer, and a 1.4 percent chance of developing ovarian cancer in her lifetime. If I am like the average BRCA1 carrier, my risk of developing breast cancer in my lifetime is 55 to 65 percent, and my chance of developing ovarian cancer hovers around 39 percent.
Extraordinary levels of risk demand extraordinary treatment. What could I do? I asked the doctors. They gave me three options. Scan my body regularly for cancer, take drugs that would give me temporary menopause, or cut out body parts I valued. It was a bit like sitting down at a restaurant and discovering it offered only gristle soup and cod liver oil soufflé. Unfortunately, this was the menu I was stuck with.
I knocked the drugs off the list first. At age 27 I didn’t fancy menopause, no matter how temporary. Plus, those drugs only lowered risk so long as you took them. Take them too long, and risk for other cancers would climb.
Surgery wasn’t my first resort. I prefer to keep my internal organs inside me, thank you very much. So I tried surveillance—a yearly gauntlet of scans for breasts and ovaries that looked simple on paper. For me, surveillance was hell. I had to cobble together my own treatment from institutions not accustomed to BRCA patients. Due to bureaucratic red tape, it amounted to more then seven yearly doctor’s visits, accompanied by anxiety while I waited—sometimes for weeks—to get the test results back, which began arriving with helpful assurances like a checked box next to “probably benign.” I felt like I was living with my neck in a guillotine, waiting for the blade to drop.
That left surgery. A preventive double mastectomy would lower my breast cancer risk by 90 to 95 percent. Or I could cut out my ovaries, drop my breast cancer risk by half, and drop my ovarian cancer risk by even more. It would also end my fertility.
I was playing chicken with my mother’s diagnosis date, inching up to 30, terrified that I would develop breast cancer at that age like her and my great aunt Trudy before her. With my husband still in grad school, we weren’t ready for a baby. So instead, at age 28, I had a double mastectomy. I couldn’t live with the terror that what happened to my mother, grandmother, and great aunts might happen to me. It still blows my mind that in an era where medicine is so advanced that they could look inside my DNA to figure out my cancer risk, the only permanent risk-reducing option was removal of an entire organ.
But removing my breasts didn’t end my fear of cancer. I simply transferred it from breasts to ovaries. Ovarian cancer is notoriously lethal—less than half of women diagnosed with ovarian cancer are alive five years later—possibly because it is so hard to detect when it is in an earlier, and more curable stage. The symptoms—bloating or feeling full, abdominal pressure or pain, pelvic pain, constipation or peeing too much, loss or gain in appetite, weight gain or loss, fatigue, lower back pain, pain during sex, or spotting between periods—are so general that they could also describe a hangover, or having eaten a too-large burrito.
To cope, my husband and I turned this into a joke. Either I have a headache, or it’s ovarian cancer. Maybe it’s the flu, or maybe it’s ovarian cancer. In the months after my mastectomy we blamed it for everything from our lackluster house cleaning to jury duty.
I still have my ovaries, though I am on hormonal birth control to lower my risk of ovarian cancer. And I am still doing ovarian surveillance. That means a technician slips an ultrasound wand up my vagina twice a year to check for ovarian cysts. A doctor gives me a pelvic exam, pressing to feel my ovaries with her fingers—not a terribly thorough exercise, given that she can’t feel all around them in this manner. Twice a year, they send my blood for CA-125 analysis. (A process Jolie touched on in her New York Times column.) Of course, CA-125 is a substance only produced by some sorts of ovarian cancer and can fluctuate for other reasons, like stress or your period.
In short, ovarian cancer surveillance sucks. As Dr. Mary Daly, chair of clinical genetics at Philadelphia’s Fox Chase Cancer Center, told me while I was reporting for my book on BRCA, “We have a lot of data that there is no screening that works for ovarian cancer.” Still, since not all the science is in yet, I keep on with the tests— until there are better tools and until I am ready to have an oophorectomy, I’ll use what I can.
It’s not easy. One morning a few months ago, a nurse called with the results of my recent transvaginal ultrasound. “We did see some cysts on your ovaries,” she said, and even the dust moats in my bedroom stopped moving while my mind raced. Maybe this was finally the beginning of my nightmare. In my head, I was sedated, dying, dead. “They are the type of cysts we expect to see on someone who is ovulating,” the nurse added. There was a pregnant pause. “So your scan was normal and there is no cause for concern.”
The terror of surveillance grates against my thoughts about children. I’m a 33-year-old writer with an irregular income. Sometimes I wonder whether my window has already slipped past—I could have had children, but instead I had a mastectomy. Perhaps it is unethical to have children when I know they would have a 50 percent chance of having my same mutation. On the other hand, every person passes secret genetic weaknesses to their kids. The difference is that I know exactly what weakness I’m passing. And as someone once told me, having a BRCA mutation is no longer a predictor of getting cancer. Instead, it predicts that the bearer will have to decide whether to do something really really crappy to prevent getting cancer.
Whatever else life brings me, I’m glad I have that choice.
Lizzie Stark is the author of ‘Pandora’s DNA,’ about the history and science of the so-called breast cancer genes, and ‘Leaving Mundania,’ about live action roleplay. More at lizziestark.com.