"Liz Tilberis's (pictured) getting involved with OCRF was a quantum leap for the organization," says Andrew Berchuck, director of the division of gynecologic oncology at Duke University in Durham, North Carolina. "It exploded from being an organization with a few hundred thousand dollars to one that had millions of dollars. Because Liz and her pals in the fashion and beauty industry got involved, in particular L'Oréal, OCRF is now able to give away $5 million in grants every year."
Berchuck's research focus is genetics and risk assessment. A woman who carries an inherited BRCA1 or BRCA2 gene mutation has up to a 60 percent chance of developing ovarian cancer. Once identified as a carrier, she may be encouraged to have what's called a prophylactic oophorectomy to remove the ovaries and fallopian tubes before they become diseased.
If a woman has taken an oral contraceptive for five years or more or has had three or more children, her risk is about half. If a woman has never been pregnant, her risk increases. For women who choose to have an oophorectomy, typically around the age of 35 to 40, when the incidence of cancer starts to rise, it equals instant early menopause.
"If you have a 50 percent chance of developing ovarian cancer and there's a greater than 70 percent chance that it's going to kill you, it becomes an easier choice," says Barbara A. Goff, director of gynecologic oncology at the University of Washington in Seattle, whose 2007 symptoms study established that there may be early warning signs of the disease and was considered major progress by many in the ovarian-cancer community.
"The study refutes the myth that ovarian cancer is silent, that women don't experience symptoms until the cancer is advanced. The majority of women, even in the early stage of this disease, experience some symptoms," says Goff. However, the key warning signs -- bloating, pelvic and/or abdominal pain, urinary frequency or urgency, and difficulty eating or feeling full quickly -- are hardly disease specific. Indeed, many women who visit their doctors with these issues are either misdiagnosed or dismissed as complainers.
"That's been the problem," Goff admits. But "if you have these symptoms, if they persist for more than two to three weeks, you need to see your gynecologist for a pelvic exam or a rectovaginal exam, during which the ovaries are more easily felt. If someone feels something abnormal, get a transvaginal ultrasound. If the exam is normal, wait a few more weeks to see if the symptoms go away. If not, then an ultrasound should be performed." A blood test for CA125, a protein that may be present at high levels in patients with certain types of cancer, may also be helpful.
Tilberis's diagnosis 16 years ago was quick, but the disease was advanced. Despite heroic efforts, she developed drug resistance and eventually died. Were she to walk into his office today, Dottino, her gynecologic oncologist, might offer new therapies to boost the immune system's response or control nausea.
"Over the six-year period she was treated, she used up the limited drugs we had," says Dottino. "We didn't have the variety we do now. The list has quadrupled, and there are different classes of drugs, such as biologicals, that were barely talked about back then."
More drugs are being tested. More clinical trials are in progress. More researchers are devoting more time to the disease. And more women are living longer.
"There have been important advances in some areas and others where we need to make substantial progress," says Jonathan Berek, professor and chair of the department of obstetrics and gynecology at the Stanford University School of Medicine. "The numbers are not dramatic, but median survival has been prolonged. Many of the treatments we now use are less toxic than before. If you look back in the last 10 years, it's slow but steady progress. We just have to keep at it."
And Tilberis would, no doubt, toast to that.
Protect Yourself
Currently, there is no accurate test for ovarian cancer, but paying attention to potential warning signs is crucial.
* Symptoms include persistent gastrointestinal complaints, pelvic and/or abdominal swelling or pain, urgency of urination, postmenopausal bleeding, and unexplained weight gain or loss.
* A family history of ovarian or breast cancer increases your risk. * For more information, visit ocrf.org and lorealcolorofhope.com, or call CancerCare at 1-800-813-HOPE.
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