In some families, breast and ovarian cancers take an inordinately fierce toll, striking one generation after another, menacing mothers, daughters, sisters and cousins. And for the women in these families, wondering if and when cancer might strike becomes a daily burden.
Facing Our Risk of Cancer Empowered (FORCE) is a Web site designed for women living with this oppressive uncertainty. FORCE provides information and support to women who may wish to learn — or already know — whether they are at high risk of developing breast or ovarian cancer due to genetic predisposition, family history or other factors. These issues are of particular concern to Ashkenazi women, who are more likely to carry certain genetic alterations associated with increased incidence of breast and ovarian cancers.
While hereditary breast cancer accounts for only 5 to 10 percent of all breast cancer cases, as many as 70 percent of those cases stem from alterations in one of two genes, called BRCA1 and BRCA2. Ashkenazi women have a 2.5 percent chance of having one of the altered genes, compared to about .1 percent of the general population. Over the course of a lifetime, a woman carrying one of the gene alterations may have as high as seven times greater likelihood of developing breast cancer, and as high as 33 times the likelihood of developing ovarian cancer, as a woman in the general population. (Men inheriting one of the genes have a slightly higher likelihood of prostate cancer, and can also pass the gene along to their children.)
Susan Friedman developed FORCE three years ago after learning that she carried the BRCA2 alteration. The Florida veterinarian was 33 years old when she underwent a mastectomy. Eight months after her surgery, she experienced a recurrence in her lymph nodes, requiring a regimen of chemotherapy and radiation.
It was by coincidence that Friedman, who does not have a family history of the disease, read about the high incidence of breast cancer gene alterations among Ashkenazis. "A red light went off in my head," says Friedman, who soon got herself tested. Once she tested positive, she opted to undergo preventive removal of her other breast and ovaries, a procedure which appears to reduce future breast cancer risk by 90 percent.
Acknowledging the difficulty of taking such drastic measures, Friedman says, "I can’t say it was an easy decision, but it was a much easier decision for me than it would be for someone who has never had cancer. There’s no right or wrong answer."
FORCE aims to assist women in making such decisions by giving them information and empowerment. In addition to a message board and chat room, the Web site features a 10-page resource guide with links to information on such topics as how to evaluate medical resources on the Web, the advantages and disadvantages of genetic testing, researching one’s family history and ways to lower one’s risk. It also includes a listing of cancer genetics professionals nationwide.
Friedman coined the term "pre-vivor" to refer to those with a predisposition to cancer. "The decisions they have to make are every bit as agonizing as those for a breast cancer survivor, and their need for support is every bit as valid," she says.
For example, Friedman notes, the decision whether to undergo genetic testing is fraught with difficulties. Depending on a woman’s individual situation, the test may not be able to provide definitive information. Some women may prefer not to know whether they carry an alteration. And those who find out, face dilemmas around informing other family members and risking potential insurance or employment discrimination.
Yet for some, she says, "It can be a huge relief if a woman comes from a family with a BRCA mutation and she tests negative." (Not only would the woman herself be at lower risk, she also would not be passing on the high risk to her children.)
Friedman urges women considering testing — which ranges from several hundred to several thousand dollars — to see a risk assessment counselor or genetic counselor, professionals trained to discuss the complex issues surrounding such a decision.
If a woman does test positive for one of the gene alterations, she faces a number of options, "none of which are ideal," Friedman says. These include careful monitoring via mammography and clinical breast exam; taking tamoxifen, a drug that may prevent the disease; or undergoing preventive removal of the breasts and ovaries. Additional measures can be taken to monitor for ovarian cancer.
While not every woman who tests positive will develop breast or ovarian cancer, she will live with the knowledge that the odds are against her. On the other hand, since hereditary breast cancer accounts for only 5 to 10 percent of all breast cancer cases, those with no family history — and those who test negative — have no guarantee of avoiding the disease. For women at normal risk, experts recommend monthly breast self-exams, an annual clinical breast exam and yearly mammogram. In addition to following those guidelines, it seems the best defense is knowledge.