Diagnosed with breast cancer at age 45, Betsy Hall recalls driving to her first support group meeting in Bolinas, "getting lost and crying all the way."
"I thought, why am I doing this? I'm not a group person," she said. "I don't want to be around sick and dying people."
That was in 1994, and it didn't take long for Hall to learn the value of "being with people who are going through the same thing," and to decide that "groups are my passion."
Today, Hall, 64, a Santa Rosa psychotherapist and 19-year cancer survivor, has been leading support groups for 17 years.
Despite the proliferation of online medical advice, chat groups and Facebook pages for people with shared health conditions, real, live connections still seem to beat the virtual.
Sonoma County hospitals, clinics and health agencies like the American Cancer Society maintain lists of active groups and keep an eye out for growing needs.
Sutter Hospital, for example, recently added Spanish-speaking cancer-support groups, a men's group and a group for partners of people with cancer.
Breast-cancer groups
The best known group model is Alcoholics Anonymous. But it was the success of breast-cancer groups in the 1980s that prompted others to want the same for their disease.
A 1989 study by Stanford doctor David Spiegel showed that being in a group helped women with metastatic breast cancer to cope and live longer by sharing their emotions and fears.
Today, there are cancer support groups, as well as for other diseases, led by nurses, clergy members and therapists, and informal ones led by patients.
"It's talking to people who walk in your shoes," said Ethel Snarski, 73, a retired Santa Rosa teacher who recently finished treatment for breast cancer.
She's in one of Hall's groups, plus she links to other women on blogs she found through the American Cancer Society.
A recent conversation dealt with hair loss from chemotherapy.
"You become bald and people tell you it's only hair, it will grow back," said Snarski.
"But for women, hair loss is devastating. It's part of our identity, how we feel about ourselves."
Big difference
Hall, a private contractor with Santa Rosa Memorial Hospital, said one big difference between telling a friend you have cancer and telling a group is the response.
"When someone new to a group tells their story, they see everyone shaking their head yes," she said.
"That's different from when you tell your family and they're staring and in shock, with that deer-in-the-headlights look."
Support groups are different from therapy, she said.
In therapy, "the person comes in with something wrong they want to fix - like a marriage or work issue."
What you get from a group, she said, depends on your need, which could be understanding a diagnosis, talking about mortality, coping with treatment, or seeking camaraderie. Sometimes that means not saying a word.
"You can just listen," said Hall. "Or you can be listened to."
Support groups have traditionally drawn more women than men, but that's changing, said Sandy Bumgarner, 72, of Rohnert Park. "Guys are taught not to cry," he said. "We're usually told to shut up and deal with it. I needed to deal with it by talking about it."
The retired astronomy professor joined a mixed group that was predominantly women. Now it's him and three other men getting together "to let it all hang out."
Not for everyone
Groups are not for everyone. Some will never be comfortable sharing intimate thoughts with strangers and might be better suited to private counseling, said Hall, or going to an online community. Online cancer groups are listed by the Association of Cancer Online Resources at acor.org.
Susan Richter's online community is made up of alumni of the Commonweal Cancer Help program in Marin County. She's also in one of Hall's groups.
Diagnosed with a rare form of uterine cancer in 2005, Richter, of Santa Rosa, was originally given two months to two years to live.
Her oncologist advised her to avoid becoming isolated.
"Being alone in your head can be a frightening place," said Richter, 71.
"I'm one of those who have lived long past our prognosis. I give people hope."
Hall leads four groups - for men and women in all stages of cancer, a group for the newly diagnosed, a family-and-friends group and a transition group for people who have finished treatment and are wondering what's next.
In looking for a group, Hall advises asking your doctor or nurse for a referral. And then shop around for one "that is just right for you."
For Richter, it meant dropping out of two groups ("too much cross conversation") before finding "a safe place with people who don't have to say much to know what you're going through."
Susan Swartz is a freelance writer and author based in Sonoma County. Contact her at susan@juicytomatoes.com.
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