Gynecologic Cancer: What Every Woman Should Know
Survivors Find Fulfillment Advocating for Others
Updated on: June 23, 2003
Sheryl Silver
It’s hard to imagine any woman who doesn't dread the thought of hearing her doctor utter the words, "I’m sorry but you have a malignancy."
The women in this article were no different prior to being diagnosed with cancer. Today, however, all say their cancer experiences — and the advocacy activities they have pursued as a result — have provided new dimension and meaning to their lives.
"I used to think people were corny when they talked about cancer being a life-altering experience but I know now what they meant," said Nyrvah Richard of Tobyhanna, Pa., a 7- year survivor of Stage III ovarian cancer and a national cancer advocate. "Cancer should have been the worst experience of my life but through it, my personal relationships have been reinforced. I’ve also met the most incredible women and physicians through the volunteer and advocacy work I’ve done."
"With reproductive cancer, in particular, you feel you have to try and do something to save other women from experiencing the same trauma and suffering," said former radio and television broadcaster Marti Spittell Ziegelbauer, a 4 1/2 year survivor of cervical cancer. "My advocacy work has given me a true sense of purpose in life that I may not have found if I had not been touched by cancer.
It has played a major role in my overall healing process."
The same is true for Susan Scherr, manager of development and marketing for the National Coalition for Cancer Survivorship (NCCS) and a long-term survivor of both breast and uterine cancer. "In 1990, two years after I was diagnosed with uterine cancer, I left a high paying position in private industry to join a non-profit where I felt I could benefit others – and have never looked back," she said.
How They Started
How did these women first get involved in advocacy work?
For Nyrvah Richard, volunteering at the New York City-based organization SHARE: Self-Help for Women with Breast or Ovarian Cancer led to a staff position as director of SHARE's Ovarian Cancer Program, a role Richard held from 1999 until last summer. Although Richard left her role at SHARE to resume her career as an artist, she continues her advocacy work as a member of the Director's Consumer Liaison Group at the National Cancer Institute (NCI), a peer reviewer for the Department of Defense Ovarian Cancer Research Program (OCRP), and a volunteer for SHARE and the Ovarian Cancer National Alliance (OCNA).
For Ziegelbauer, it was a newspaper article in which she shared the details of her diagnosis and treatment that led to her advocacy and philanthropic work. Not long after the article appeared, Ziegelbauer was contacted by a hospital in Green Bay, Wisconsin, where she had been a broadcaster for 12 of her 20 on-air years. The hospital wanted to know if it could use her name to create a foundation designed to provide free cervical screening for indigent women in the local community.
"I accepted and the Marti Spittell Ziegelbauer Foundation was born. I'm proud to say that since then, the foundation has had sufficient funding not only to pay for Pap smears but to underwrite the cost of follow- up biopsies and laboratory work for women whose Pap smears show abnormalities," said Ziegelbauer. "We're also starting to raise funds for a second foundation that will pro-vide similar services to women in outlying areas of Green Bay. The new foundation will be affiliated with a hospital that serves these areas through a network of medical clinics."
Susan Scherr's second cancer diagnosis was the catalyst that launched her into the advocacy arena. Born in New York City and raised on Long Island, Scherr was first diagnosed with breast cancer in 1977. She thought she was done worrying about cancer when she reached her 10-year anniversary of being cancer-free in 1987. To her shock and surprise, the next year, she was rushed to the hospital after fainting in her office. The emergency room doctors determined she was hemorrhaging internally.
"The next day, after transferring to a nearby hospital, surgery was performed. The diagnosis was uterine sarcoma," recalled Scherr. "I was told it was rare, aggressive and not easily survivable. I was told I probably had six months to two years to live."
Fortunately for Scherr, her family, and the tens of thousands of cancer survivors her advocacy work has helped, Scherr has been in remission for nearly 15 years following the three surgeries, high dose chemotherapy and radiation treatments that accompanied her 1988 uterine cancer diagnosis.
The Why of It
What motivated these three women to become committed advocates?
"After that second cancer diagnosis, I knew I had to become more proactive. I wanted to do something to empower survivors," said Scherr. "When I heard about the National Coalition for Cancer Survivorship, the name and mission of the organization resonated with me. I felt people had a right to information and to the best cancer care available, although access to that care wasn’t — and still isn't — always easy to get. With cancer, it's imperative to become an educated self-advocate or ask a family member or friend to advocate on your behalf."
And advocate she has. When the NCCS opened an office near the nation's capital, Scherr was asked to become manager of the office. Since then, Scherr has held several positions with NCCS including director of community and strategic alliances and director of program development and special events, as well as her current role.
Scherr also serves on the board of the Ovarian Cancer National Alliance and the Maryland State Council on Cancer Control. She is a member of the patient advisory board of the Coalition of Cancer Cooperative Groups and the NCI's Consumer Advocates in Research and Related Activities(CARRA).
When I asked Ziegelbauer why she first went public about her cancer, she said, "I felt a responsibility to tell my painful story. I thought it was worth sacrificing my privacy and talking about my surgery and subsequent health challenges if I could save even one life. Women had to know what could happen if they skip a Pap smear or think they're too busy to make time for that annual visit to the gynecologist!"
Nyrvah Richard also felt a responsibility to help and educate others. As she noted so eloquently, "I believe survivorship is not some-thing you take for granted. It is a responsibility to speak on behalf of yourself and others, to use the life you've been given to save others."
For all three of these inspiring women, the diagnosis of cancer was initially shocking and devastating and will be forever life-altering. Nonetheless, they chose to heal their pain by helping others.
Like the many wonderful women who have become outspoken advocates after being touched by gynecologic cancer, Nyrvah Richard, Susan Scherr and Marti Spittell Ziegelbauer have demonstrated not only great personal resilience and determination but the compassion and commitment to reach out and make a better future for all of us.
On behalf of all who have benefited from their efforts — and who will continue to do so in the future — let me say, "Thank you, from the bottom of our hearts."
This article by the Gynecologic Cancer Foundation originally appeared in an advertising supplement to the New York Times on Sunday, June 22, 2003.
GCF gratefully acknowledges Aventis Oncology for its generous support of this educational supplement. The content of this supplement is the work of many individuals and does not reflect commercial interests.
Aventis Pharmaceuticals
www.AventisOncology.com