Cancer support groups are dotting America's landscape in ever-growing numbers. Practically each day of the week, at any given hour, small groups of individuals — living with cancer, dying of cancer or recovering from cancer — gather for mutual support and camaraderie.
Although members of these groups typically start out as strangers, many become as close as family. This occurs over time, as each member struggles to cope with cancer, its treatment and the accompanying range of emotions.
There is a big difference between a cancer support group and a support group such as Alcoholics Anonymous, says Greta E. Greer, director of Survivorship Initiatives for the American Cancer Society (ACS). The latter type of group provides mutual support to help people cope with a common problem and change behaviors that contribute to that problem, Greer says. "Cancer support groups," she says, "do not focus on changing behaviors and are basically for emotionally healthy people who are experiencing cancer-related stress."
Health-care professionals, cancer experts and even cancer patients themselves say cancer support groups provide members respite from the rigors of medical tests, surgical procedures, doctor office visits and hospital stays. For example:
- You can weep and laugh and otherwise unwind, unload and vent without shame or guilt.
- You can talk with a level of openness that may feel uncomfortable with others, such as your spouse, your children or even your doctor.
- You can express your innermost fears and frustrations about cancer, knowing that others in the group are going through what you are going through and will understand you.
According to personal accounts — and the pioneering "group therapy" work of Irvin D. Yalom, M.D., the existentialist psychiatrist — the support group process encourages hope and a spirit of mutual altruism. And it can boost self-esteem, which can suffer when you are diagnosed with a disease that may cause death or leave physical scars.
Often feeling alienated and alone after a diagnosis of cancer, cancer support group members quickly begin to feel accepted, needed and important. Inherent in the words "support" and "group" is the message you are not alone.
Many hospitals and medical centers run support groups for cancer patients. In addition, some disease-specific cancer organizations also run support groups; for example, the national Leukemia & Lymphoma Society offers support groups for people who have been diagnosed with leukemia or other blood-related malignancies.
ACS support groups. The ACS organizes, runs and facilitates thousands of cancer support groups through its state and local affiliates, Greer says. ACS support groups are free. They meet at various times of the day and on various days of the week. And they meet in a variety of settings, including ACS meeting rooms, hospitals, clinics, civic organizations, community centers, churches and the like.
The Cancer Survivors Network. The ACS launched its first Web-based, virtual cancer support group in 2001. Called the Cancer Survivors Network, the site boasts 9,000 registered users. The site, with sophisticated safeguards to protect confidentiality, allows you to custom-design a support group that fits your individual needs. For example, you can build your own personal network in a chat room.
The ACS phone network. Don't have a computer or an Internet account? Call the toll-free number (877) 333-HOPE. This is the ACS's telephone version of the Cancer Survivors Network. The phone network is aimed at people who may live in remote areas, are too sick or otherwise cannot attend a support group meeting. The phone network provides hope and support to those whose lives have been touched by cancer. Topics reflect a range of true experiences and real points of views by people living with cancer.
The Wellness Community. Another major force that offers support groups and related services for a broad-based population of cancer patients is The Wellness Community. Harold Benjamin founded this nonprofit enterprise almost 20 years ago in Santa Anna, Calif., to help his wife. Diagnosed with breast cancer, she was unable to find the kind of psychological support she needed for herself and her family.
Today, The Wellness Community has grown into a network of 19 facilities in 25 locations across the country. Each facility offers a diverse menu of weekly cancer support group meetings — as well as other services and education programs — to complement standard medical and experimental cancer treatment. (Actress-comedienne Gilda Radner, who died of ovarian cancer in 1989, became a member of The Wellness Community and championed its work.)
Cancer support groups can range in membership from several people to a dozen or more per group. Groups are often are based on a common denominator, such as the following:
Type of cancer. Some support groups are cancer-specific, in that they focus on only one type of cancer, such as lung cancer or bladder cancer or colon cancer. By default, such groups may be gender-specific. A cervical cancer group is likely to include only females, whereas prostate cancer support groups are aimed at men. Then again, any of these groups could also reach out to couples or to the families or caregivers of these patients.
Stage of cancer. The key criterion for some groups is where you are in your cancer experience: Are you newly diagnosed and just starting treatment? Are you recovering from surgery, chemotherapy or radiation treatment? Have you recently been deemed cancer-free? Or are you terminally ill and want to come to grips with death and dying?
Age. In some cancer support groups, the age of the group members is as important a common denominator as the cancer that each member has. For example, there are support groups for children and teens (with or without their parents or other family members), as well as support groups for adults and the elderly.
The structure of cancer support groups varies, too, in terms of such things as group leadership, longevity and meeting schedules.
Self-help cancer support groups. Also called mutual help support groups, some of these groups are leaderless. Or the leader or leaders may have started the group themselves, may be veteran cancer patients or were preselected by the organization that sponsors the group. Some leaders simply evolve, gradually taking on a leadership role.
Self-help cancer support groups may form around a common interest beyond the cancer, say cooking, golfing or visiting art museums. Membership is typically free, although voluntary donations (for refreshments) may be requested at times.
Professionally led cancer support groups. In such groups, members may decide on specific goals and "group work" at the outset. To help the group reach its goals and stay on target, a health-care professional leads the meetings. The health-care professional usually has a specific expertise, be it in cancer, a mental health discipline or group dynamics and processes.
There may be a fee to join a group like this, although it's usually not exorbitant. Sometimes financial aid is available to cover costs or an income-based sliding-fee scale is provided. Some health insurance plans may cover the costs of groups such as these.
Ongoing support groups. These ongoing groups meet at an established time on certain days. One advantage of a group such as this is that membership is typically very fluid, and you may join or leave the group as personal needs dictate. On the downside: A new member may take a while to feel part of the group, especially if there is a core of veteran participants.
Time-limited groups. These groups typically start and end over a set period of time that's relatively short in duration. For instance, a support group may run for one full day or for six weeks. Some groups may only convene based on demand. Others may be held periodically throughout the year. Health-care professionals usually lead these types of groups, and there is usually a fee. These types of groups are attractive to people who don't have the time or can't commit to get involved in an open-ended longstanding group. The downside: If by chance you miss the start of a session, you will have to wait (or shop around) for the start of another session.
Support groups are not for everyone, say experts. But members rarely experience any emotional harm, they say, especially in groups run by an experienced health-care professional. Professionals are trained to understand group dynamics and be on the alert for signs (such as major depression or a treatment setback) that suggest an individual is particularly vulnerable and needs one-on-one professional help.