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A place for support...

... for victims of gynecological cancers

Tuesday, January 23, 2001

By Virginia Linn, Post-Gazette Staff Writer

The 10 women are separated by thousands of miles between Maine and California and Alberta and Ontario. They met in chat rooms on the Internet seeking a common goal: finding women like themselves who had been diagnosed with gynecological cancers.

Susan Donley of Oakmont, who helped found Eyes on the Prize. (Franka Bruns, Post-Gazette)

These "below the belt" cancers -- cervical, endometrial/uterine, ovarian, vulvar, vaginal, tubal and gestational -- are often overshadowed by the attention focused on breast or other cancers. But they're no less devastating. And if not caught early, just as deadly.

"We do share so many issues," said Susan Donley of Oakmont, who at age 44 was diagnosed with endometrial cancer and had a total hysterectomy, including removal of the ovaries. "I don't think people realize how it affects your sense of womanhood. ... None of us can have children. When you realize how basic these things are to our well-being, it's a big wound."

In their writings on the Internet in 1998 and 1999, the women complained about how little information or support were available on these cancers, which involved a combined 77,000 new cases in the United States last year. Although most had never met face to face, they joined to create a Web site and nonprofit organization called Eyes on the Prize to raise awareness.

Donley, now 47, an instructional designer who writes and designs educational materials for nonprofit organizations, is its president and Webmaster.

The site, www.eyesontheprize.org, was launched on Mother's Day last year and provides a place for emotional support, personal contact, medical information, advocacy and resources. The group's symbol is the iris because of its femininity.

This month, which also is Cervical Cancer Awareness Month, the site introduced "In Your Community," which provides a database of local gynecologic cancer support groups. The site receives about 10,000 hits a month.

"One of the beauties of these Internet technologies is that people in outlying areas can have access and connections to other women who have been down the same path," said Judy Knapp, an oncology social worker at Magee-Womens Hospital in Oakland who was recently brought on board as a consultant.

Such a site can provide a cushion for the emotional impact of the diagnosis, she said. Many women diagnosed with cervical cancer, for example, are young and face a hysterectomy before they've had a chance to have children. "It's a life-altering experience."

One of the founders, Sue Bates, 45, of Middletown near Harrisburg, was comforted by her contacts on the Web at a time when her family didn't want to talk about her cancer anymore.

A mother of two children, she was diagnosed with cervical cancer 3 1/2 years ago. Her story is like those of many others with the disease -- she had gone annually for the Pap smear -- the primary screening test for cervical cancer -- but abnormal results were misreported to her by the doctor's office as normal. She didn't learn of this until she pushed for additional tests after experiencing worrisome symptoms. By that time, she needed a radical hysterectomy.

"It was scary that I was doing everything correctly, but still had these results," she said.

A lesson she learned is to always ask the doctor's office for a copy of the pathology report on the Pap smear. Don't just take your doctor's 'negative' or 'atypical' comments -- get the actual report.

Because so many gynecological cancers have no symptoms, women have to be diligent in getting annual pelvic exams and push their doctors for additional tests if they have concerns, Donley said. The death rate for ovarian cancer is so high, for example, because without a reliable screening test and few symptoms, it is usually diagnosed late when the chance for survival is slim.

The Web site is dedicated to Beverly Roberts of Texas, who died in September 1999 of cervical cancer. She always closed her e-mails with "Keeping my eyes on the prize!"

"That was real grief we felt when she passed," Donley said. "It's been a very wonderful joy to be able to do this [establish the organization], but at the same time we have these terrible tragedies that are right in our face all the time."

Incorporated as a nonprofit organization in August, the group hopes to raise money to expand its support and advocacy efforts. As a tribute to co-founder Cathy Black of Hamilton, Ontario, who is dying from cervical cancer, the group is working on developing Cathy pamper packs for cancer patients. The packs would include such items as ginger tea to ease nausea during chemotherapy or crazy slippers to lighten the mood.

Black, 39, who was admitted into a hospice last week, includes her story on the Web site.

"My sense of hope and confidence is fanned by the multitude of women who have walked down this road with me and know the bumps along the way as intimately as I," she concludes.

"For them, and for myself, I work to open the doors of the gyny cancer closet and let some light in. I consider it an honor to help, encourage and enlighten, and I credit this cancer for raising my consciousness."



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