(WOMENSENEWS)--Jenn Sommermann never suspected that cancer lurked inside of her.
"When I was 42, I was running triathlons and in the best shape of my life," said Sommermann, 45, of Freeport, N.Y. "But one day, I felt a lump in my belly and realized I'd been experiencing some bloating, weight gain and fatigue. To my surprise--and my shock--my doctor diagnosed me with advanced-stage ovarian cancer, which required an oophorectomy to remove my ovaries, a hysterectomy to remove my uterus and six months of grueling chemotherapy."
During National Ovarian Cancer Awareness Month in September, health advocates are celebrating the fact that women like Sommermann are more likely to overcome ovarian cancer than they were when TV comedienne Gilda Radner, a star of "Saturday Night Live," died of the disease in 1989. The average length of survival after diagnosis is now five years, nearly double what it was 20 years ago.
Even so, inadequate screening means patients like Sommermann usually don't catch the disease until its latest--and most deadly--stages.
"Today we have a better idea of what the red flags for ovarian cancer are," said Dr. Judith Wolf, a professor at the University of Texas MD Anderson Cancer Center in Houston. "A doctor who saw Radner today might recognize she had a family history of cancer that put her at high risk. But 20 years after Radner's death, we still haven't increased the number of women diagnosed early, and we need to focus our efforts on more effective screening."
Rare and Deadly--but Treatable
Ovarian cancer accounts for just 3 percent of all cancers in women, reports the Gilda Radner Familial Ovarian Cancer Registry in Buffalo, N.Y. But though this disease is rare, it is deadly, killing 15,000 of the 22,000 women it strikes each year.
Three-quarters of cases are not caught until the advanced stages, when cancer has spread and the chances of survival are a grim 15 percent.
Because ovarian cancer is usually caught so late, it is the fifth-deadliest disease affecting women in the United States.
But if ovarian cancer is diagnosed early, when treatments are not as intensive or long-lasting, it boasts a survival rate of 92 percent.
In the face of that, health advocates this month are spreading the word about the need to recognize ovarian cancer's causes and respond to its symptoms as soon as possible.
But their No. 1 aim is to improve screening.
Raising funds to support that aim are the Gilda Radner Ovarian Cancer Familial Registry; the Atlanta-based American Cancer Society; the Chicago-based Gynecologic Cancer Foundation; the Lynne Cohen Foundation, based in Santa Monica, Calif.; the Seattle-based Marsha Rivkin Center for Ovarian Cancer Research; and the Dallas-based National Ovarian Cancer Coalition.
The Ovarian Cancer Research Fund, the largest private ovarian cancer funding agency in the United States, with headquarters in New York City, is launching a "Hope Line" counseling and referral service in partnership with the Paris-based cosmetics company L'Oreal. The fund is also holding "super luncheons" at governors' mansions across the United States to raise money for--and awareness of--ovarian cancer.
The home products company Seventh Generation, based in Burlington, Vt., is supporting the fund by running a month-long "Let's Talk…Period" campaign to raise $22,000--a dollar for every woman diagnosed with ovarian cancer each year.
Also drumming up support is ovarian cancer survivor Sommermann, who has recovered from her illness and is back to her regular triathlon training schedule.
"To support research, I'm running 50 triathlons in 50 states by my 50th birthday, which will fall in five years," said Sommermann, who has finished eight states and raised $25,000 of her $100,000 goal so far. "Ovarian cancer can come out of the blue and its symptoms are easy to brush off. But if we finally develop a better screening test, no woman will needlessly die of this devastating disease again."
Ovarian cancer's symptoms include bloating, stomach pain and changes in bowel and bladder habits. They can be mistaken for signs of other illnesses, such as indigestion, irritable bowel syndrome and chronic stress.
"Though these symptoms aren't always clear-cut, they're still the most common way that ovarian cancer is detected," said Dr. Molly Brewer, a gynecologic oncologist at the University of Connecticut Health Center in Farmington, Conn. "Because ovarian cancer comes in many different types, which don't always grow in the same pattern or at the same pace, scientists don't have a clear understanding yet of how this cancer works and are having a difficult time creating an effective screening test."
Though 90 percent of ovarian cancer diagnoses are not tied to genetics, having a family history of cancer--as Radner did--does put you in danger of developing this disease.
If a woman in your immediate family has ovarian cancer, your risk spikes 10 to 15 percent, reports the American Cancer Society.
Having an inherited mutation in breast cancer gene one (BRCA1) or breast cancer gene two (BRCA2) increases your risk anywhere from 10 to 70 percent.
Scientists are examining why ovarian cells turn cancerous and how to stop this process. They are also studying BRCA1 and BRCA2 in the hopes of developing treatments targeted specifically for women with these genetic mutations.
A family history of breast, colon, endometrial, pancreatic or uterine cancer also increases the likelihood.
"High-risk women often opt to have their ovaries removed as a preventive measure, which lowers chances of developing ovarian cancer by 95 percent in their case if oophorectomy is done before menopause," said Brewer.
Other risk factors include starting your menstrual cycle before age 12; experiencing menopause before age 50; having trouble conceiving children; being obese; taking estrogen therapy for more than five years to treat the symptoms of menopause; and being older than 61, the average age at which ovarian cancer first strikes
Screening Falls Short
The quest for a universal screening for ovarian cancer--which Pap smears and other routine medical tests cannot detect--has been an uphill battle.
Last year, a blood test called OvaSure was withdrawn after the Food and Drug Administration blasted the Laboratory Corporation of America, its Burlington, N.C., maker, for failing to get approval from the agency before marketing the test. The Chicago-based Society of Gynecologic Oncologists had questioned the accuracy of the test.
Another blood test, from Correlogic Systems, based in Bethesda, Md., has been stalled in development for more than a decade and has yet to win approval from the Food and Drug Administration.
For lack of other alternatives, doctors continue the screening measures they've used since the 1990s: detecting symptoms, then administering a pelvic exam and transvaginal ultrasound alongside a CA-125 blood test, which measures a protein associated with ovarian tumors.
Because CA-125 also spikes in the blood in response to other health problems--such as endometriosis and uterine fibroids--this screening method is not sure-fire. It also only detects early-stage ovarian cancer in 25 percent of cases.
"As was the case 20 years ago, the best way you can protect yourself from ovarian cancer is to recognize its symptoms yourself--and to advocate for screening and treatment," said Wolf.
Molly M. Ginty is a freelance writer based in New York City.
For more information:
Ovarian Cancer Research Fund
National Ovarian Cancer Coalition
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