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CANCER SUPPORT GROUPS
Cancer support groups can be incredibly helpful if you have been diagnosed with cancer; but it hasn't always been that way.
A little more than a decade ago, the concept of emotional support as an important part of a cancer patient's treatment was considered radical. But then, in 1989, a Stanford University doctor, David Spiegel, M.D., published a landmark study in the medical journal The Lancet. He reported that a group of 18 women with advanced breast cancer who attended weekly support group meetings lived twice as long as 18 women with the same diagnosis who did not participate in support groups.
Even though the study has had its critics, and the exact findings related to survival have not yet been replicated, Spiegel's report triggered a movement -- now booming -- to provide emotional support, usually in the form of support group meetings, for all cancer patients who want it. These days, it is easier to find support groups -- both in-person and online -- and more difficult to find critics. Many studies on support groups have found that regular attendance can boost quality of life, calm anxiety, and make patients more active and in control of their care, although some research has shown that the experience does not benefit everyone.
Here is what you need to know if you're looking for cancer support groups -- even if you're not the "joiner" type:
What If I'm Not a Joiner?
Many cancer survivors balk, at least initially, at the idea of joining a support group, therapists say. When the suggestion is made, usually by a physician or a therapist, the retort is often: "But I'm not a joiner!"
There are other protests, all heard at one time or another by Shirley Otis-Green, a licensed clinical social worker at the City of Hope National Medical Center in Duarte, Calif., a cancer center which offers support groups. Among the common comments:
- "I'm too tired."
- "I'm too ill."
- "It's too inconvenient."
- "I don't have the emotional energy to bond with someone."
- "I don't want to meet people who are going to die."
Otis-Green ventures a suggestion: When you feel up to it, go. Try it. And while not everyone who tries it returns, many do -- even those who are not "joiners," like Alever J., 50, of Pasadena, Calif., a breast cancer survivor. She went to a support group at the Wellness Community, a Cincinnati-based program that operates in California and several other states. They allowed her to participate for two years, she says, although the time limit had been loosely set at 18 months. "They had to kick me out," she jokes. Now she is in a ''graduation'' group which meets informally for breakfasts.
What's Available
Many cancer support groups are face-to-face, in-person meetings, usually led by a social worker or therapist trained in the area. There are also online support groups -- not simply chat rooms where people can exchange messages, but cyber versions of the traditional face-to-face meetings. Usually, the services are free.
Among the many organizations offering support groups for cancer patients:
Each of these organizations has different views about who should be in a support group together. While some believe your group should include only people with the same type of cancer as you, others say that groups with broader criteria, and a variety of age ranges and cancer types, are more productive.
In the latter camp is Michael States, a marriage and family therapist who serves as the clinical program director for the Wellness Community in Santa Monica, Calif. "People benefit by getting a broader picture," she says. She cites an example: "In one group, a woman talked about body image, sexuality and cancer and how she felt different [after undergoing a mastectomy]." The women in the group offered sympathy, but a man in the group made the difference. He turned to her, States recalls, and said if she were his wife, it wouldn't make a difference if she had both breasts or not.
The Research
"Research shows that people facing a life-threatening illness who have a good social support system fare better, " says Frank Bauer, Ph.D., vice president for behavioral research at the American Cancer Society. It improves their quality of life and reduces their distress.
Among some recent findings:
- Women with metastatic breast cancer who were offered both educational materials and support group therapy for a year had much less stress and fewer mood disturbances than women with the same diagnosis who were given only the educational materials, according to a study published in May 2001, in the Archives of General Psychiatry. The researchers, who followed 125 women, say the support groups helped the women face and deal with disease-related stress.
- In a study of online support groups, Mitch Golant, Ph.D., vice president of research and development at the Wellness Community in Santa Monica, Calif., followed 58 women with breast cancer from all parts of the country who participated in an online support group once a week for 16 weeks. At the end of the study, all reported feeling less depressed, better able to cope and better able to withstand pain, he reported at a meeting of the Association of Oncology Social Work. Next, he will conduct a three-year study to compare electronic support with face-to-face support.
- Although most reports point to the positive aspects of support groups, research published in [2000, in the journal Health Psychology found that not everyone benefits.. Some women with recent breast cancer diagnoses who already got support from family and friends and attended a weekly support group for eight weeks reported a reduced quality of life afterwards. Other women in the study, however, who said they got little support from family, did benefit from the support group. Researchers speculated that hearing stories from women who lacked solid family support may have depressed the women who thought they were doing well.
- A wealth of other studies document the value of informal support and of having a network of family and friends you can call on for help.
When to Go
If you decide the support group experience is for you, when do you start? Typically, cancer survivors seek group support sometime within the first six months after their diagnosis, States says. "But people are coming sooner and sooner."
Some groups are time-limited, running for several weeks; others run much longer, with some participants staying a couple of years. Some allow you, after completing several sessions, to drop in on an as-needed basis later.
"We see spikes in attendance, during time periods of anxiety," says Otis-Green. You might feel a special need for group support on the anniversary of your diagnosis, for instance, or before follow-up tests to see if a treatment was effective.
Finding the Best Group for You
How to choose? Here are some tips:
- Look for a group that's organized by a reputable cancer center, medical center or organization. If you are looking for an online group, check to see if it is a secure site and affiliated with a reputable institution or medical center.
- Find out who will be the facilitator -- it should be a trained mental health professional, ideally with experience helping cancer survivors.
- If possible, visit a group more than once. You might visit on an off-night and come away with the wrong impression. While at the group, Otis-Green suggests, ask yourself if the participants are challenging you and if what you are hearing is adding to your information base about how best to deal with cancer.
- Follow your gut. "Most people come back [to support group meetings] because they felt better when they left," Otis-Green says. Satisfied support group participants often tell her afterward that they felt heard, and had a chance to express their feelings. "They're also glad they have found a place where it's OK to be bald, and where they can say 'metastatic' and not have to define it." _
- Don't be afraid to shop around. Gina D., 34, of Los Angeles, went to a group that included many older women soon after her diagnosis of malignant melanoma. Many were dealing with issues such as finding more time to spend with their grandchildren. Besides the problem of age difference, Gina, who's single and childless, said she found the group "pretty simplistic." She adds: "I needed a group that was tougher, a group that would push me." She switched to a young person's cancer group offered through the Wellness Community -- and ended up getting a lot more out of it. She also prides herself on helping others in the group challenge themselves. In a recent group meeting, she convinced a woman with Hodgkins' lymphoma who was obsessing about getting breast cancer (with no real basis for the fear) to stop the destructive behavior. If you find a group that's ideal for you, you'll know, Gina says. "There's a level of openness you don't have with people who are healthy, however much they love you."
What to Expect
The benefits of support groups vary according to the group and the participants, yet some common threads are mentioned over and over by survivors who have participated. "Support groups are a place you can go and say things you would not say to family," says Nancy P., 48, of Los Angeles, who joined a support group after her diagnosis of ovarian cancer in June 2000. "[Things like] I'm scared I'm going to die."
There's practical feedback too, with tips on coping from people who've been there. Two months after Nancy had cancer surgery, she learned her father had pancreatic cancer. He didn't want her to fly to the Midwest to see him; he worried she might catch cold or flu from fellow passengers and didn't want to compound her health problems. "I floated it out to the group," she says. And they offered a suggestion that worked. "I wore a surgical mask on the plane and hung an air purifier around my neck." She didn't get sick, and best of all, she was able to see her father before he died.
Such exchanges of information are common in support groups, says Otis-Green. Having a chance to share with others, to talk with people who can say "Let me tell you what chemotherapy is," is valuable as well as comforting. It can be as simple, she says, as one person complaining that the wig she wears to hide chemotherapy-induced hair loss is itchy -- and another telling her how she solved the problem by using a scarf as a wig-liner.
What Not to Expect
As helpful as support groups might be, they won't take the place of a loving family or longtime friends. Here's what not to expect:
- Don't think they'll solve all your problems. Says Nancy P: "Don't expect them to give support such as rides to the meetings or bring you food. That is not to say that won't happen or couldn't happen.". But, she adds, the point of support groups is psychological and emotional support, not helping you solve the problems of daily living.
- Remember, the group depends on you just as you depend on it. Don't just expect to be helped, but to help.
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