I live with a time bomb. It doesn't tick every second, but when it does it is so loud and scary that it immobilizes me. It started ticking again last week when I heard that actress Angelina Jolie had made a decision I've wavered on for years.
She had a radical double mastectomy — and plans eventually to have her ovaries removed — because genetic testing showed that she was at significant risk for developing breast and ovarian cancer, which killed her mother. I also lost my mother and an aunt to ovarian cancer. The time bomb keeps ticking.
The Risk We Face
BRCA1 and BRCA2 are two of the genes known as tumor suppressors. A mutation within them can sharply increase a woman's risk of developing breast or ovarian cancer. Jolie says genetic testing indicated she had an 87 percent chance of getting breast cancer and a 50 percent chance of developing ovarian cancer, which is more difficult to diagnose and treat.
It is important to note that of the 190,000 women who will develop breast cancer this year, 90 percent will not have a BRCA1 or BRCA2 mutation — but those who do have it face an average likelihood of 67 percent, versus about 12 percent in the rest of the population.
(MORE: Should You Request the Genetic Test That Angelina Jolie Opted For?)
If you're worried about the odds because of your family's history with cancer, don't panic, says Dr. Sofia Merajver, director of the Breast and Ovarian Cancer Risk Evaluation Program at the University of Michigan. To gauge your true risk, the first step is not surgery or even a genetic test, but genetic counseling. "A counselor can help you look at your risks based on a complex set of questions about your personal history and that of both sides of your family," she says.
Once you have been assessed, a counselor will review all options. "A lot of factors go into the decision to remove breasts or ovaries," Merajver says. "Has the woman had children and already breastfed? Will she want to have more children? Is she post-menopausal?"
If your family history indicates that genetic testing could be beneficial, the best way to get a truly thorough picture is for family members with cancer to be tested for a mutation as well, although for women like me, whose relatives have already died of cancer, that's not an option.
BRCA1 and BRCA2 testing can also be expensive — up to $3,000 — and it's often not covered by insurance. (Your family history can factor into the insurance verdict, all the more reason to have counseling first.) Similarly, you can never assume that just because you have insurance, the cost of surgery and reconstruction will be covered. Work closely with your insurance company every step of the way to avoid surprises.
How a Woman Decides
Lethia Hodge, 45, decided to undergo a radical prophylactic mastectomy 10 years ago, largely because her mother and two of her sisters had breast cancer. She considered genetic testing to see if she carried a mutation that raised her odds, but worried about the impact of a positive test on her ability to maintain affordable health care coverage.
Often the decision to have preventive surgery is not based on genetic factors alone, "but how much risk you are willing to live with," Merajver says. "Some are willing to live with it and wait and see." Others, like Hodge, feel that watching and waiting is like playing Russian roulette.
"I thought about it all the time and kept going back to my surgeon because I was just obsessed," Hodge says. "She was reluctant, but she reconsidered because I had such a dramatic family history."
As it happens, Hodge's decision was the right one. Even though she had had a series of clean mammograms, testing on her surgically removed breast tissue revealed five pre-cancerous cysts. "I didn't care anything about my breasts," says Hodge, a mother of eight. "What I did care about was being here to raise and love my kids." Recalling her mother's journey with breast cancer, she says, "I didn't want to put my kids through that."
Like Jolie, television personality and blogger Rene Syler has gone public about her decision to have a preventive double mastectomy. Both her mother and father had breast cancer diagnoses. Syler did not undergo genetic testing before making her decision, but she did have pre-cancerous cells that required annual biopsies. "It was taking its toll," Syler says, so she had the surgery and hasn't looked back.
Christine Pearson, the executive director of the Mid-Michigan Affiliate of Susan G. Komen for the Cure, is conscious of the genetic hand she has been dealt. Her mother's breast cancer was first diagnosed 20 years ago and recurred last year; her older sister is a nine-year survivor; and three aunts died from cancer. But to this point, she has had neither a mastectomy nor a hysterectomy.
Pearson and her family began taking steps to make an informed decision more than a decade ago. She had genetic counseling and testing, which confirmed that she has a gene mutation. "I haven't done the surgery yet," she says, "but I get mammograms and MRIs every year and I have had a lot of biopsies." After consulting with her doctor, Pearson also opted to take a course of Tamoxifen drug therapy. Tamoxifen is traditionally prescribed to breast cancer patients, but has also been shown effective in helping to ward off the onset of the condition in women at high risk.
Tamoxifen is one of many choices Merajver's staff discusses with patients who come through their center, along with the pros, cons and costs of each. Many women are surprised to learn, for example, that "in terms of long-term health care savings, having the surgeries may be a better alternative than preventive drug therapies and other options," she says. "While the surgeries to remove breasts and ovaries are not a 100 percent guarantee, once they are done, the patient no longer has to subject herself to the monitoring that happens with drug therapies and frequent biopsies."
It's important to work with your doctor or genetic counselor to understand not only the health issues involved, Pearson says, but also the privacy and financial considerations. Increased difficulty purchasing affordable life insurance after a BRCA1 or BRCA2 mutation is found is one concern. "I purchased insurance before I had the testing done," she notes.
And even though there are legal protections in place for patients, Merajver says, women need to be aware that there are no absolutes, and that workplace discrimination can be subtle and difficult to prove, even for those with potentially serious medical conditions.
Jolie's story may inspire many women to get genetic testing and take action to secure their health. But, Merajver says, it also highlights the disparity between wealthy women like the Oscar-winning actress and those who lack health insurance or the money to pay for testing or surgery out of pocket. "There are so many women at high risk for breast and ovarian cancer who cannot afford to be tested and cannot afford to have a double mastectomy or their ovaries removed," she says. "There are no real options for those women."
A Change in the Air
I have been contemplating the removal of my ovaries for a decade. More women develop breast cancer than ovarian cancer each year, but, Merajver says, "because of the shortage of effective early diagnostic tools, the diagnosis comes later, usually at stage three or four" — and survival rates are lower.
At each annual checkup, my gynecologist and I have a heart-to-heart about my risks, fears and any new diagnostic tools or treatments that could potentially save my life. Just this week, I asked her again and she confirmed that not much has changed. But she did refer me for genetic counseling, which my insurance company requires before they will approve the preventive hysterectomy I'm considering. After the consultation, my doctor and I will sit down again to make a final decision. As a post-menopausal woman, I have no need for ovaries that may take my life, but I'm doing all I can to make an informed decision.
Discussions about surgery with my husband have evolved over the years. I understand how difficult it is for someone who doesn't feel the tick of the time bomb in his own body to understand the fear and fatalism that hovers over someone who does. The first couple of times I broached the subject, he said, "If your mother had brain cancer, you wouldn't be trying to cut off your head."
But something changed last week. When my husband read Jolie's story, I think he finally got it. Time and experience can do that. Since I lost my mother, we've seen several other family members go through mastectomies and chemotherapy. Some we lost to cancer anyway.
"Maybe it is time to really think about it," he finally said.
Way ahead of you, honey.
Andrea King Collier is the author of Still With Me…A Daughter's Journey of Love and Loss, a memoir of her journey with her own mother, and lead author of The Black Woman’s Guide to Black Men’s Health.