What are support groups?
Support groups are groups of people in similar life situations who meet on a regular basis to share their concerns. A support group is a safe place to exchange ideas about how to handle difficult issues. Support groups can meet regularly in person, by telephone, or online.
Support groups can be organized in different ways:
- Open membership: Open membership means that members can come and go freely, and long-term commitment is not required. If you're going through treatment and your schedule isn't consistent, this may be the type of group for you.
- Closed membership: Closed membership means that registration and commitment to a certain number of sessions is required. Once a specific number of people have signed up, the group is closed to new members. This helps members to establish consistency and to get to know each other better.
Some of the benefits of breast cancer support groups include:
- connection during an experience that can sometimes feel isolating
- tips and information from those who've been through the same thing
- opportunities to use your knowledge to help others
Breastcancer.org's Discussion Boards and local organizations such as You Night Empowering Events help people find support and community after a breast cancer diagnosis. In this video, Deidra talks about the value of joining a support group and forming bonds with other women whose lives have been changed by cancer. This video made possible through the generous support of the Center for Restorative Breast Surgery.
What to expect with support groups
Although there are no standards for how support groups are conducted, they are often moderated by a group leader. Some breast cancer support groups are led by professionals, such as psychologists, psychiatrists, oncology social workers, oncology nurses, or pastors. Other groups are led by breast cancer survivors. Both types of groups have advantages and disadvantages:
- Groups organized by professionals: Trained professionals have their experience in setting up groups, helping members get what they need, and responding to people who are upset or angry. However, many times, trained professionals are not breast cancer survivors themselves and cannot offer advice from their own experience.
- Groups organized by breast cancer survivors: Breast cancer survivors bring personal experience to support groups they organize. For example, a cancer survivor can help those who are newly diagnosed know what to expect. But because many breast cancer survivors have not had support group skill training, they may not always know how to respond to difficult group situations. At the same time, even without official training, people who've had breast cancer often have enough life experience to be comfortable when group dynamics get challenging.
Once you've chosen a support group, you may need to allow yourself time to adjust to the group setting. Some people have an easier time sharing feelings than others. It's okay if you feel more comfortable just listening.
Support group practitioner requirements
- Professionals who lead breast cancer support groups — psychologists, psychiatrists, oncology social workers, oncology nurses, or pastors, for example — should be licensed in their fields and should have some training in group leadership. Professionals should feel comfortable with different personalities and know how to respond to group members who are upset, angry, or have a tendency to take over the conversation.
- Breast cancer survivors who lead breast cancer support groups should have enough life experience and be comfortable enough to handle difficult personalities and challenging group dynamics.
When looking for a support group, ask the group leader about his or her credentials and experience in leading groups of breast cancer patients.
For more on how to find a qualified support group leader, see our Finding a Complementary Medicine Practitioner section.
Research on support groups in people with breast cancer
There have been a number of studies about the potential benefits of support groups for people with breast cancer. In 2005, a review article compared 5 studies (one not yet complete) involving support groups for patients with metastatic breast cancer. The article reported that while one study identified increased survival time resulting from participation in support groups, 9 other studies did not show survival benefits. All of the studies, however, reported that participation in support groups resulted in positive effects on psychological well-being.
The study that did show survival benefit was published in 1989. In this controlled study, 86 women with metastatic breast cancer were followed. Half of the women had been enrolled in a weekly support group during medical treatment. The other half did not participate in a support group. The women in the support group met weekly for a year. In addition to regular support group participation, these women were also taught self-hypnosis to manage pain.
The author followed up with participants after 10 years. Three of the women were alive and medical records were obtained for the other 83 women. The records showed that the women in the support group lived on average twice as long (37 months) as the women who had not attended a support group (19 months). The women attending the support group also reported a higher quality of life.
While these study results are encouraging, the results from other studies are mixed on whether participating in support groups can lengthen life. Studies have shown, however, that support groups can provide an increased quality of life for people with breast cancer.
Important things to consider before trying support groups
- You may find that a support group is helpful during one phase of your treatment, but not so helpful in another phase. For example, if you've just been diagnosed, it may feel overwhelming if some people in the group are going through the stress of a recurrence.
- Ongoing issues such as marital problems or depression are better managed one-on-one with an individual counselor than in a support group.
Check with the support group leader before going to a session to make sure your needs are similar to those of the group.
"Belonging to a group where you can discuss anything and everything is very freeing. You can talk about everything from medical treatments to lack of sexual interest, to fury at someone who has cut you off while driving. The loneliness and isolation that so many feel when they are going through the breast cancer journey can be helped, if not erased."— Musa Mayer, a cancer survivor and patient advocate