By Kate Leonard, Ph.D.
Many women find a support group helpful during treatment and recovery from gynecologic and other cancers. One woman said that receiving a cancer diagnosis “fire balled” her and knocked her off her feet. Attending a support group gave her a lifeline. Another said it meant so much to meet other women with similar diagnoses who were living their lives fully, while some have said a support group gave them a safe place to laugh and cry about it all.
The Portland, OR Support Group for Women with Gynecologic Cancers has a long history. Over 20 years ago, three women, all diagnosed with ovarian cancer, looked for a support group for women like themselves in the Portland area and found none. When one of them asked a nurse about such a group, the nurse replied, “Oh, they – ovarian cancer patients --- don’t live.” Such was the ignorance at the time. Somehow, the three women did find each other and decided to form a self-help group that they named “Sisters In Support” or SIS, for short. The group initially received support from the American Cancer Society, Providence St. Vincent’s Medical Center.
At the end of 1990, Dr. Kate Leonard, PhD, was invited to be the psychologist advisor to the group’s board of directors. Over time, the women had difficulty finding the energy to maintain the time and space for meetings but under Dr. Leonard’s guidance, they became a hospital-based support group and part of the Cancer Support Services at Legacy Good Samaritan Medical Center. It was determined that the group would be free, and open to any woman who was diagnosed with a gynecologic cancer (ovarian, fallopian, endometrial, cervical, peritoneal, vulvar), no matter where she was treated.
Rosemary McDermott, RN, and Dr. Leonard became the facilitators; the first meeting of that group was December 2, 1992. Since then, the 2nd Wednesday of every December is celebrated as the anniversary of the support group including what it has meant for so many women and for all who have taken part.
In the beginning, participants met weekly to discuss the stress of cancer treatment and the impact on themselves, their lives and their relationships. Later, meetings were shifted to the 2nd and 4th Wednesdays of each month. The format is open-ended, so that each woman can give group support a try and see if it is a good fit for her. Women join the group at any stage of their diagnosis including treatment, recovery, and beyond. They leave and return to the group at any time. Speakers with knowledge about nutrition, exercise, managing fatigue and neuropathy, genetic testing, alternative and complementary medicine, and research trials, are often scheduled.
Women in the group find that they can talk about feelings and ideas that they are afraid to share with their families. Fears and hopes are expressed. Losses are grieved. Milestones are celebrated. Hard questions are faced, and strong bonds are formed.
One member, Diane, who joined the group in 2002, became interested in what was happening at the national level with regard to ovarian cancer, specifically. She attended meetings of the Ovarian Cancer National Alliance and brought back opportunities for raising awareness and education on the local level. She and another ovarian cancer survivor ultimately formed the locally-focused Ovarian Cancer Alliance of Oregon and SW Washington.
The women in the gynecologic cancer support group are empowered to participate in consumer advocacy, the Survivors Teaching Students program (education for third year medical students and nurses), peer support for one another, and events to raise public awareness. The group has been on the news and has even become the subject of a book about inspiring women called The Hourglass, by author Diane Dennis.
Support groups are not for everyone. But many feel that their own cancer experience can be improved, enhanced and aided by the shared commonality that a support group affords, particularly one like the gynecologic cancer support group that meets in Portland.