A cancer diagnosis inevitably raises many questions and often generates fear—in many cases fear of the unknown and anxiety over what to expect. The Ovarian Cancer Research Fund (OCRF) Woman to Woman Program, located in several major cancer centers, seeks to alleviate some of the fear and provide meaningful connections for women by matching newly diagnosed gynecologic cancer patients with survivor volunteers.
Launched in 2003 by ovarian cancer survivor Valerie Goldfein at Mount Sinai Medical Center in New York City, the Woman to Woman Program trains survivors who are at least one year out from remission to partner with newly diagnosed patients to provide support and insight into various aspects of the cancer journey. Sabrina Valvo, director of communications for OCRF, says that the program revolves around the axiom To know the road ahead, ask those coming back. It makes sense, she says, to honor the strength and the experience of survivors by matching them with new patients who have questions and concerns about what may lay ahead: “Nobody can tell you what it’s like unless they’ve been through it themselves.”
Ellen Kapito, RN, Woman to Woman Program coordinator at NewYork-Presbyterian Hospital, says that the program has filled a significant need among gynecologic cancer patients at the hospital. “There was an unmet need among patients for psychosocial support to help them manage their treatment,” she says. Survivor volunteers can offer a unique perspective and firsthand knowledge to meet this need, along with critical compassionate support at a time when patients can feel especially vulnerable and isolated. “The program debunks common myths and helps patients feel not so alone,” Ellen adds.
To ensure that the matches are effective and healthy for both survivors and new patients, the program provides extensive training for the volunteers and takes great care with matching each pair. Julia Volpin, associate director of special programs and partnerships at OCRF, says that typical training at hospital sites “encompasses an introduction to the program, training in navigating the hospital and the gynecologic oncology departments, background in gynecologic cancers and treatments, role playing to consider various common scenarios, an emphasis on self-care for the volunteers, and a heavy emphasis on the role of the volunteers—Are they truly in a position to separate their own experience from that of the current patient? Are they ready to be there for the patient?” After the initial training, a program coordinator typically meets with each volunteer individually, and volunteers participate in ongoing training sessions as they continue in their role, which not only serves the patients they counsel but also creates bonds within the volunteer group.
Once trained, survivor volunteers are matched with patients based on a carefully considered list of factors. Ellen says that at New York-Presbyterian Hospital, pairs are matched “based on their needs, diagnosis, cultural background, and other factors.” She says that the care taken in the match process results in truly meaningful bonds that serve both the patient and the volunteer: “I have one volunteer who was in her thirties when she was diagnosed with ovarian cancer. She knew only older women with this disease. Her first patient was also a young woman who, like herself, had the same issues of caring for young children and how to be intimate while undergoing chemotherapy. When I witnessed the two talking, there was an instant bond. Afterward the volunteer came and hugged me—we were both pushing back tears—and thanked me for providing an opportunity for her to help someone. From my perspective it was magical for both of them.”
Inspired by the program’s success, OCRF is working with corporate sponsor QVC to expand the Woman to Woman Program to additional hospitals nationwide. Sarah DeFeo, director of scientific affairs at OCRF, says that the organization is happy to provide these services to patients: “Research is always going to be our core mission, but we feel this is an important program we can support. It’s kind of the softer side of OCRF and something unique that we can contribute to help improve the lives of women who have these diseases.” _
For more information visit ocrf.org
Ovarian Cancer Research Fund is the oldest and largest charity in the United States dedicated exclusively to funding ovarian cancer research. Its mission is to fund scientific research that leads to more-effective identification, treatment, and ultimately a cure for ovarian cancer. Thanks to the generosity of individual donors, foundations, and corporate partners, OCRF investigators are developing innovative strategies for early detection; exploring the genetics that increase risk of ovarian cancer; understanding the underlying molecular biology of the disease; identifying new and better targets for treatment; and deciphering how and why ovarian cancer spreads and how to stop it.