Breast Cancer Support Groups: A Conversation with Karen Cooper
Filed under Magee-Womens Hospital
By Lisa Jancarik
Article reprinted from http://understandmymind.com/themes/breast-cancer-support-groups/
One in eight women will develop breast cancer in her lifetime according to the American Cancer Society's 2010 statistics. Yet patients facing that diagnosis can feel isolated even among the friends and family who want to be supportive.
On the other hand, learning that you have breast cancer doesn't automatically make you ready to march into the nearest support group meeting, does it? Maybe it feels too personal, or maybe it all still seems too surreal, for a support group to seem like a place you belong. Maybe online support groups seem more appealing than face-to-face meetings.
I wondered at what point in the breast cancer journey most women come into support groups, so I asked Karen Cooper, a licensed clinical social worker and oncology patient navigator with Magee Women's Hospital in Pittsburgh.
"A group is great if you feel as if you've already talked to your family and they've heard it all," said Cooper.
She told me many people do come to support group meetings when first diagnosed. "Those are the people who have a need for a lot of information."
However, she went on to make clear that others may join later, after some internal processing and commencement of treatment. Other women find they want a support group after a recurrence, even if they didn't use group support as a resource after the initial diagnosis. Still others never attend a meeting but take comfort knowing that they could join a group if they wanted to.
For support groups meeting face-to-face, members typically get together monthly or every two weeks. Also, it is common (but not necessary) for a group to have a facilitator, typically a nurse or social worker. If a person is interested in joining a group, Cooper recommends contacting the group's facilitator first to investigate. That way, the facilitator can talk with newcomers in advance about who comes to meetings and what is typically discussed.
The structure and membership of a support group varies with location and time, as membership tends to be fluid. That is, members are often at different points in their cancer experience, and the proportion of women with newer diagnoses and those further along in treatment will vary within a particular group at any given time. Some members may even be in remission, but come for the social contact. Cooper points out that support groups tend to "take on a life of their own" as they evolve to meet member needs: some will have speakers from time to time, while others find their members get what they need from discussions among themselves.
Cooper went on to say, "A lot of younger women like a support group - women with children and some different issues than our older patients would have."
Feeling Shy or Private?
Introverts shouldn't automatically discount the idea of a face-to-face support group, Cooper says. An experienced facilitator can help newcomers feel comfortable, and it is not uncommon for a new person to say she'd just like to observe at her first meeting. It's okay to wade in slowly.
"It's amazing how understanding people can be in that situation. I would definitely not discourage a private person from coming [to a face-to-face support group meeting]," Cooper said.
However, online support groups can be another option for the more private person or for people from more rural areas. Note that living in a rural area doesn't necessarily mean you can't find a face-to-face support group if you want one: the small Pennsylvania town where I grew up had one listed on the internet.
When I was researching this article, I wondered how engaging online support groups were, so I googled a couple of them to poke around. I found myself caught up in the first thread I saw, the initial post created by a frustrated woman with a new diagnosis. She had a lot of questions about medical decisions she felt her doctor hadn't discussed with her adequately. In this case, a knowledgeable nurse soon responded, and others chimed in with their own thoughts and experiences (there is no guarantee that nurses are reading posts, and an online support group is not the equivalent of advice from a trained medical professional). It felt surprisingly intimate and supportive, in spite of the anonymity of all concerned. I could see the appeal.
Knowing the Group Is Right for You
While talking with the facilitator before coming to a meeting is key, there are some other considerations.
* A ground rule for most, if not all, support groups is that everyone has a right to speak. If you aren't getting your say, talk to the facilitator or move on.
* You have a right to expect confidentiality within the group.
* Most groups are free of charge. If there is a significant fee for meetings, or if the meeting agenda seems to be driven by an attempt to sell something, then move on.
* If attending a meeting made you feel more anxious or concerned than before you came, talk to the facilitator about it. A good facilitator will work to make the group a comfortable place for all members.
The Mayo Clinic website has a listing of these and other "red flags" for support groups at http://www.mayoclinic.com/health/support-groups/MH00002.
Wondering how many of us will need or want a breast cancer support group one day, I tried to put that often-cited statistic, one in eight women, into a context I could relate to, and this is what I came up with: about two dozen women, including me, came into Starbucks during the 30-minute period of Friday's morning rush. Statistically, at least three of us present at that time have, have had or will have breast cancer. Of all the fears one may bring to a support group meeting or online forum, the least of all should be fear that no else will be there.
Karen Cooper, a licensed clinical social worker and oncology patient navigator* with Magee Women's Hospital, University of Pittsburgh.
*What Is an Oncology Patient Navigator?
Despite having poked around the medical field in the past, I had never heard the term "oncology patient navigator" until talking with Karen Cooper.
A torrent of detailed, sometimes disjointed information and complicated new challenges accompany a cancer diagnosis, making it sometimes overwhelming for patients to connect the dots themselves. As a patient navigator, Cooper works with outpatient breast and gynecological cancer patients to hook them up with the resources available to them. These resources range from payment options patients may not know about (in Pennsylvania, this can mean the Breast and Cervical Program through the PA Department of Welfare) to finding appropriate support groups.
The first patient navigator program came out of the Harlem Hospital Center in New York City in 1990, a creation of Dr. Harold P. Friedman originally focusing on poor patients. That program identified "barriers" to treatment for the navigator to remove: financial barriers, communication and informational barriers, and medical system barriers (missed appointments, lost results). Good ideas spread, and now patient navigators are found in many healthcare settings nationwide assisting people from all walks of life.
Although no formal training is required, most patient navigators are licensed social workers, like Karen Cooper, or come from a nursing background. Navigators need to know their way around the healthcare system, but they must also understand the local culture for the population they serve.
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