When Suzi Shoemaker was diagnosed with ovarian cancer in 2006, she assumed there would be a support group for her in Lexington, Kentucky. After her first experience with a Women’s Cancer Group, where she was told “We only had one member with ovarian cancer, and she just died,” Suzi decided there was a need for ovarian cancer survivors to share their unique stories.
Through referrals from the University of Kentucky Gynecologic Oncology staff, Suzi met another survivor, Sharon Walsh. In March of 2008 the two women founded Bluegrass Ovarian Cancer Support Inc. at Ramsey’s Restaurant with about eight other ovarian cancer survivors in attendance.
Today, Bluegrass Ovarian Cancer Support offers a monthly support group for women with ovarian cancer. About 45-50 women and family members are part of the group at any time. Sue Jacobs, the group’s President, connected with the group when she herself was diagnosed with ovarian cancer: “I never thought I would be a support group kind of person, but I wanted to talk to some other women who had been there, done that. I’ve been involved ever since.”
About half of the monthly meetings feature speakers who are experts in cancer, including local physicians. At least one meeting a year is dedicated to advances in research; other presentations have discussed topics such as complementary therapy and creating an advance directive.
Bluegrass Ovarian Cancer Support participates in the Ovarian Cancer National Alliance’s Survivors Teaching Students: Saving Women’s Lives® (STS ) program. Local volunteers give presentations on ovarian cancer for medical and physician assistant students at the University of Kentucky. Sue sees the impact of STS firsthand: “I love talking with women at awareness events, but I might talk to a few hundred women. Every one of these health care students will be talking to thousands of women in their lifetime—what an impact!” She hopes that the group can recruit more volunteers to present and expand their STS presentations to 15 other health professional programs in the Bluegrass region.
This Partner Member also does outreach to women throughout the area. Volunteers make care bags that are given to newly diagnosed gynecologic cancer survivors. They include information about Bluegrass Ovarian Cancer Support, symptom cards, teal pins and “things you might need in the hospital—like a journal, tissues and gum.” The group participates in health fairs throughout the year and the “Turn the Towns Teal” program during National Ovarian Cancer Awareness Month in September.
Being based in horse racing country, Bluegrass Ovarian Cancer Support and the Capital Ovarian Cancer Organization (another Partner Member organization) took part in the “Horses and Hope” event at nearby Keeneland Race Course. This event is primarily to increase breast cancer awareness, but “They let us bring our teal in with the pink,” says Sue.
Bluegrass Ovarian Cancer Support has worked with the Alliance from the very beginning, when Suzi used materials about how to start a support group from the Alliance website. As they became more involved, they decided to formalize the relationship by becoming a Partner Member. Sue values the access to resources and projects that they would otherwise be unaware of, including STS, advocacy work on Capitol Hill, the Ovarian Cancer National Conference and programs that train survivors to be research advocates. “We wouldn’t know anything about these programs except for the Alliance.”
Six years ago there was no support group for women with ovarian cancer in the bluegrass region. Today, as Sue notes: “We want to be sure every woman knows there’s a place she can come to for support.”