Seeking Support

Cancer support groups offer hope and strength, but finding the right fit requires effort

So, your diagnosis is in. You have Stage 3 breast cancer, which has metastasized (spread). You undergo a battery of tests and treatments: blood draws, PET scans, radiation, chemotherapy, surgery. And through it all, you’re left feeling anxious, fearful, and alone. What do you do?

Your medical team recommends that you sign up for a local cancer support group. So you go. But after a few sessions, you begin to have doubts: Is this really for me? Am I being helped here?

“Support groups are living organisms and can vary a lot from meeting to meeting depending on who is attending and what is being discussed,” says Missy Petty, lead oncology counselor at Northwestern Medicine Living Well Cancer Resources in Warrenville, Illinois. “We always encourage participants to consider attending at least twice before they decide it’s not for them.”

But if your group doesn’t work, don’t give up.

Shopping for a cancer support group may be difficult and time-consuming. But the benefits you’ll derive from finding a good one — and you will — can ease many of your fears and concerns. You also may unexpectedly learn a great deal as you navigate your cancer treatment.

Support groups can reduce anxiety and depression, and boost the participant’s self-esteem, according to the American Association for Cancer Research. They also can strengthen relationships with family and friends and help patients cope with their diagnoses.

“Cancer is a very isolating illness, and it’s easy to feel like you are the only one feeling what you are feeling,” Petty says. “Listening to other group members can validate your experience and put into words something you have been struggling to describe.”

Not all support groups are alike. Some are independent; others are hospital- or clinic-based. Most are nonprofit and do not charge a fee, while others may bill your insurance — make sure you ask.

Support groups also vary in practice model and approach. Some specialize in specific cancers; others take a more general approach. There are gender-specific groups (men, women, transgenders, gays) and combined patient and family groups or family-only groups.

They meet in a variety of formats: in-person, online, by phone, or in combination. Some offer one-on-one counseling. Others provide ancillary support such as nutrition, self-esteem classes, bereavement counseling, child care and Spanish-language services.

Despite these structural differences, oncology social workers or cancer survivors run most cancer support groups, and they adhere to strict professional standards.

How do you choose? To help with your search, consider these tips:

Set goals from the start.


What do you expect to achieve from your experience? This will help you find a good fit. People come to support groups for all kinds of reasons, says Krystal Kumpula, a social worker with Wellness House, a support organization in Chicago for people with cancer. But in general, they come for two main reasons: cancer-specific information and emotional support. “They come to learn, to find community, and to cope,” Kumpula says.

Determine the support group’s goals.

“The group’s mission should be to create a compassionate community that provides support and breaks down barriers to care,” says LauraJane Hyde, CEO of Gilda’s Club Chicago, a nonprofit that provides free social and emotional support for people with cancer and their families and friends. The club’s name comes from Gilda Radner, the comedian who died of ovarian cancer in 1989. Based on a recent survey, 91% of Gilda’s Club Chicago members report improved quality of life through the group’s influence, Hyde says. There’s a definite value in participating.

Request an orientation. 


An initial interview should clear up many questions. They might include: How many types of groups do you offer? How many participants typically make up a group? Do you offer in-person meetings, or are there other options? Are some sessions held in the evening after work? What about weekends?

Consider commonalities and differences. 


The most worthwhile cancer support groups are those in which the group’s needs reflect your own. “Patients often benefit when group members share similar diagnoses, age, and life stages, and feel understood, and emotionally supported,” says Linda Mathew, past president of the Association of Oncology Social Work based in Chicago. But there’s also benefit in contrasting viewpoints and experiences. “Someone else’s viewpoint can challenge, enhance, or support your own,” and that’s a positive thing, Petty adds.

Decide on a modality. 


Which approach would be better for you? An in-person group, online sessions, real-time video, telephone, or one-on-one discussions? Do you feel more at home with a professional moderator, such as a social worker or psychologist, or a peer? Are you comfortable with a mixed-gender group, a group with families present, or a single-gender, patient-only group? Others are homebound. Consider convenience as well.

Listen and learn. 


On your first visit especially, listen. Take notes. (Recordings are usually prohibited.) You may have opinions, but save them for later, once the group has accepted you into its circle. When you’re ready to participate, speak openly about yourself. “Sharing experiences — even the hard ones — can be powerful and healing whether you’re battling fear, rebuilding confidence, or simply trying to steady yourself day by day,” says David Diaz Sr., a prostate cancer survivor who runs a national online support community called The Reluctant Brotherhood.

Decision time. 


After one or two visits, determine whether the group is right for you. Are there honest, frank discussions about treatment regimens, medication outcomes, doctors, and treatment results? Do you feel part of a community? Most importantly, do the participants offer encouragement on your journey?

Cancer support groups as a whole can be an invaluable source of knowledge, fellowship, encouragement, and support — ultimately what you and your family may need to weather what is likely the most difficult and lonely time of your life. That alone makes the effort to find the right one worthwhile.

For information about support groups in Chicago, contact the American Cancer Society at (312) 372-0471. Ask about the 24-hour helpline.