Many of you know that I am a major fan of support groups. I strongly believe that the right group can be the best help for someone living through breast cancer. It can be difficult to find the "right group." Given the high incidence of breast cancer, one would think that there would practically be groups on every street corner. Instead, there are relatively few, and the options diminish when you try to match schedules and geography. I facilitate five support groups at BIDMC: one for women who are newly diagnosed or going through adjuvant treatment, two for women who have completed treatment, one for women with Stage IV/metastatic disease, and one for women with GYN cancers. If any of this might interest you, please contact me. My standard description of my groups is this: "We talk about all the hard things, but we also laugh a lot. And are always there for each other."
How do you find a group near you? You can ask your doctor or nurse (and, frankly, the nurse is more likely to know). If there is an oncology social worker in your treating facility, she certainly will know. You can call a local hospital or cancer center, ask for the social work department, and ask there. You can call your local American Cancer Society; they try to maintain current lists of nearby groups. You can look online. You can contact the Association of Oncology Social Work at www.aosw.org and ask for the name of someone near you.
When you do make a call of inquiry, in addition to asking about times and location and fees (usually there are none for cancer support groups; ours are all free), there are two important questions to include:
1. Who facilitates the group? You want an experienced and competent group leader. Although some other kinds of groups work fine as peer support, I think that is risky for cancer support groups.
2. Who comes to the group? Some groups, like mine, are structured for women at specific points in the experience. Others are open to anyone with a diagnosis. There are people who strongly argue for both types. My opinion is that it is better to be with others in a comparable situation. A woman living with Stage IV breast cancer and a woman who was diagnosed last week with early breast cancer will not be able to be as much help to one another or find as much personal help as each would like.
Here is a summary from ASCO's Cancer Net about groups:
Support groups can help people with cancer gain emotional and educational support throughout their cancer experience.
Many types of support groups are available, and many resources are available to help you find one that is best for your situation.
Having cancer can be one of the most stressful experiences of a person's life. Support groups can help many people cope with the emotional aspects of cancer by providing a safe place to share experiences and learn from others who are facing similar situations.
Reasons to join a support group
Hearing the news of your cancer diagnosis usually triggers a strong emotional response. While some people experience shock, anger, and disbelief, others may feel intense sadness, fear, and a sense of loss. A person may also feel lonely and isolated, as even the most supportive family and friends cannot understand exactly how it feels to have cancer.
Support groups offer the chance for people to talk about their experiences with others living with cancer.
Group members can share feelings and experiences that seem too strange or too difficult to share with family and friends. The group experience can create a sense of belonging that helps each person feel less alone and more understood. Sharing feelings and fears with others who understand may also help reduce stress.
In addition to sharing their feelings and experiences, support group members discuss practical information, such as what to expect during treatment, how to manage treatment side effects and pain, and how to communicate with health care providers and family members. Exchanging information and advice may help achieve a sense of control and can reduce feelings of helplessness.
Many studies have shown that support groups can help people with cancer feel less depressed and anxious and more hopeful. Although support groups are not for everyone, people who benefit from support groups may find themselves better able to handle their emotions.