Silent No More
Spreading the word makes ovarian cancer far less deadly.
Evelyn Goldie and Wendy Heacock aren’t physicians or research scientists. Yet, when they speak, medical professionals listen. What Goldie and Heacock lack in formal training and diplomas they make up for in personal experience. They both survived ovarian cancer, which will strike 22,430 women this year and kill 80 percent of those afflicted.
“You can be sitting on a time bomb and not even know it,” says Goldie, whose doctor told her there was “nothing wrong” when she first complained of not feeling well. At the time, the Wynnewood resident was 70. Her complaints of bloating and constipation were dismissed as “normal’ for a woman her age. She was given a laxative and sent home. It took eight months and three referrals for her to receive the diagnosis no woman wants to hear.
“If my ovarian cancer had been caught early in stage one, my chances of survival would have been 90 percent,” she explains. “By the time mine was detected, I was between stage three and four. My survival rate was down to 20-30 percent. If only my doctors had listened to me.”
Heacock’s story is strikingly similar. “I was 48, in good health, exercising regularly and working as a sales rep when I first had symptoms. I was very tired and couldn’t eat. They told me I had irritable bowel syndrome,” says the Villanova resident.
Even though Heacock’s mother had died of ovarian cancer in 1975 and she had a strong family history of breast and prostate cancer, her gynecologist assured her that her chances of contracting ovarian cancer “weren’t greater than anyone else’s.”
For over two years, she was shuttled from one specialist to the next, until an ultrasound ordered by a gastroenterologist identified a small ovarian cyst. “Six weeks later, the cyst had grown to the size of a grapefruit,” Heacock says.
Having already had three children, she opted for a total hysterectomy, followed by aggressive stem cell replacement at Fox Chase Cancer Center. “My chances of survival were down to 30 percent, but this fall will be my seventh year since my diag-
nosis,” says Heacock, “I really want to live.”
As ovarian cancer survivors, Heacock and Goldie are doing more than just beating the odds. They’re actively spreading the word, educating women and physicians on the warning signs of ovarian cancer as members of the Sandy Rollman Ovarian Cancer Foundation.
“I didn’t just want to join a support group,” says Heacock. “I wanted to make a difference.”
The Havertown-based organization is a nonprofit founded in memory of Rollman, who died of ovarian cancer in 2000. “Sandy was the most energetic, fun person I ever knew,” says Robin Cohen, an oncological nurse at Lankenau Hospital in Wynnewood. “We were a lot alike. She was my age—only 32—and we were both from Broomall. Sandy was married and trying to have children when she
Like Goldie and Haycock, Rollman’s symptoms—bloating, urinary frequency, abdominal pain and nausea—were
misdiagnosed as irritable bowel syndrome for two years. At the time, Rollman wasn’t aware of any family history of cancer, but her mother subsequently contracted breast cancer in 1999 and died of ovarian cancer in February of this year. “Sandy felt very much alone,” says Cohen. “She confided in me because she didn’t want to make friends and family feel bad.”
Just before she died, Rollman issued a call to action: “You go out there and you fight for us,” Cohen recalls Rollman insisting.
Soon after, Cohen and Rollman’s sister, Adriana Way, established the foundation in Sandy’s name. They’ve worked tirelessly in partnership with the American Cancer Society, local medical schools and the Gynecological Cancer Association to pass legislation to increase awareness of the warning signs of ovarian cancer and raise much-needed research funds. “We’re a grassroots coalition made up of ovarian cancer survivors, families and friends,” says Cohen, “We met with over 200 congressional offices for three-and-a-half years to pass Johanna’s Law, a national gynecological cancer awareness act in January 2007.”
Another breakthrough came in June of this year when, for the first time, national medical organizations agreed that physicians must recognize and rule out ovarian cancer for women reporting bloating, pelvic or abdominal pain, difficulty eating or urinary frequency for more than a few weeks.
ONLY 19 PERCENT of ovarian cancers are diagnosed in the early stages. “The best indicator is the woman herself,” says Robin Cohen, whose Sandy Rollman Ovarian Cancer Foundation initiated “Doctor You,” a program that educates women to recognize the symptoms of ovarian cancer and demand that their doctors immediately rule it out.
A Pap test can’t detect ovarian cancer, so experts recommend a pelvic/rectal exam, a transvaginal sonogram and a CA 125 blood test. If ovarian cancer is suspected, it is crucial to see a gynecologic oncologist without delay.
“It’s a frustrating issue,” admits Dr. Michael Seiden, president and CEO of Fox Chase Cancer Center. “It’s not uncommon for a woman to see three
doctors before receiving a diagnosis of ovarian cancer. If we could catch ovarian cancer in stage one, before it spreads beyond the ovaries, the majority would be cured.”
Some women with a strong family history of cancer, or who’ve had other cancers, elect to have their ovaries surgically removed. The Gilda Radner Familial Cancer Registry strongly recommends that all women with a family history of ovarian cancer in two or more first- or second-degree relatives undergo risk-reducing surgery. Meanwhile, the National Comprehensive Cancer Network offers a more individualized approach that considers a woman’s desire to have kids and related medical issues.
There are simple genetic blood tests to identify mutations of the BRCA1 and BRCA2 gene. In their normal form, they prevent cancer by producing a protein that stops cells from growing out of control. While Jewish women of Eastern European ancestry are at higher risk for these genetic mutations, carrying the gene does not necessarily mean a woman will someday get cancer. Women who test positive for BRAC1 are about 20 times more likely to develop ovarian cancer before age 70. Those carrying the BRAC2 mutation have a 10 percent chance. “We recommend that women carrying the BRAC1 mutation have their ovaries removed between the ages of 35 and 40, after having children. Women carrying the BRAC2 mutation can wait until their 45th birthday,” says Seiden.
Fox Chase Cancer Center took the lead in genetic testing and is one of four medical centers in the country to receive a SPORE (Specialized Program of Research Excellence) grant for ovarian cancer research. “We’re coming up with new
bio-markers for the DNA mutations that put some women at higher risk,” Seiden says. “Within the next decade, we hope to have a painless blood test.”
Treatment options have also improved. “We now have the ability to deliver
chemotherapy directly into the abdominal cavity via a catheter, rather than giving it just intravenously through the entire body,” says Seiden. “One of the benefits—in addition to extending life—is that a women need not lose her hair.”
Participating in clinical trials is
another important option. The Ovarian Cancer National Alliance Clinical Trials Matching Service helps women interested in becoming participants. At any given time, Fox Chase Cancer Center has more than 170 clinical trials underway. (For more information, call (888) FOX-CHASE.)
Remember: Time is of the essence. The sooner ovarian cancer is detected, the better the chances of survival.
“Ovarian cancer has long been in the shadows of breast cancer when it comes to advocacy and research funding,” says Seiden. “This year, ovarian cancer will strike as many women as breast cancer, but there will be far fewer survivors to advocate for research funds; 160,000 women will survive breast cancer, compared to ovarian cancer’s 8,000.”
To add local resonance to their cause, the Sandy Rollman Ovarian Cancer Foundation commissioned local artist Ann Northrop to paint a mural depicting survivors in Manayunk. “We aren’t satisfied with the status quo,” says Cohen. “We need people to get the word out.”
Upcoming fundraising events for the foundation include the sale of jewelry made by Wendy Haycock and a cookbook published in memory of Sandy’s mother.
“People don’t have to worry about where they donations go,” says Wendy Heacock. “Every penny goes straight to ovarian cancer research.”
To learn more about the Sandy Rollman Ovarian Cancer Foundation, call ( 877) 730-1100 or visit sandyovarian.org.
Having one or more risk factors doesn’t mean you’ll develop ovarian cancer, but your risk may be higher than the average woman. However, a majority of those who get ovarian cancer have no risk factors.
Inherited gene mutations. You’re at a higher risk for ovarian cancer if you’re a Jewish woman of Eastern European descent who carries one of two breast cancer gene mutations.
Family history. Sometimes ovarian cancer occurs in more than one family member without inheriting any gene mutations. If you have a mother, sister or daughter with ovarian cancer, it increases your risk by 5 percent.
Age. Risk increases with age. It most often strikes postmenopausal women.
Childbearing status. Women who’ve had at least one pregnancy are at a lower risk than women who’ve not been pregnant.
Oral contraceptives. Taking birth control pills for at least five years may lower the risk of ovarian cancer.
Infertility. Studies indicate that infertility increases risk even without use of fertility drugs.
Ovarian cysts. Cyst formation before menopause is normal. But cysts after menopause have a greater chance of being cancerous.
Hormone replacement therapy (HRT). Studies show that women who haven’t had a hysterectomy and who use HRT for five years or more have an increased risk of ovarian cancer.
Obesity. Women who are obese by the age of 18 are at increased risk of developing ovarian cancer before menopause. Obesity is also linked to more aggressive cancers.
Loss of appetite