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Susan Donley: Keeping up support for survivors of gynecological cancers

Tuesday, December 31, 2002

By Virginia Linn, Post-Gazette Staff Writer

Since the Eyes On the Prize Web site began in May 2000 as a virtual support group for women with gynecological cancer, interest has grown tremendously. Daily hits have jumped from 240 just two years ago to more than 1,000 now.

Susan Donley and very good friend, Rosie. (Steve Mellon, Post-Gazette)

"It's a mixed blessing. Our reaction is: We're glad you found us, and regret sincerely that you're here. It's a party that nobody wants to be invited to," said Susan Donley of Oakmont. "Every hit is someone who is terrified."

Donley, 49, was one of 10 founders of the Web site from all over the United States and Canada who met online seeking similar answers and support for a cancer diagnosis "down there" that nobody wanted to talk about.

But while the effort has been exhilarating in some respects, it's been emotionally devastating in others.

One of the founders, Carol Black of Hamilton, Ontario, has died, and two other women have struggled this year with recurrences of cancer.

With seven women carrying on the dreams of 10, progress has slowed in developing a brochure about the site at www.eyesontheprize.org and in spreading information about cervical, endometrial/uterine, ovarian, vulvar, vaginal, tubal and gestational cancers. The increased workload and emotional toll have led to periods of burnout.

"It's a morale problem when you watch people you've really come to care about get threatened by the beast again."

Donley, who writes and designs educational materials for nonprofit organizations, is the organization's president and Webmaster. She reached her five-year survival mark in June after being diagnosed at 44 with endometrial cancer that resulted in total hysterectomy.

She hopes the group can refocus in 2003 and move ahead on its goals. One of Black's ideas was urging women all over the world to set up regular support groups in their own communities for patients with gynecological cancer, but "there are precious few of them," Donley said.

And a lot more needs to be done to build awareness about these cancers. Even well-educated health consumers, she said, believe all they need to do is get an annual Pap smear, while they fail to address changes in their bodies that may signal other below-the-belt problems.

She's hoping her work will change those attitudes.

"Every time people said, 'I don't know what I'd do without Eyes on the Prize,' I feel humbled to be part of something so meaningful."

Virginia Linn can be reached at vlinn@post-gazette.com or 412-263-1662.

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