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Is an Advanced Breast Cancer Support Group for You
You can gain valuable support and advice from the women in a metastatic breast cancer support group, but there are other options available that might be a better fit for your needs. By Julia CalifanoMedically Reviewed by Krystal Cascetta, MDReviewed: November 20, 2018Medically ReviewedJoining a support group can help you cope with the day-to-day pressures of living with metastatic breast cancer.Trina Dalziel/Getty ImagesA diagnosis of metastatic breast cancer can leave you feeling overwhelmed, anxious, and isolated. And while the support you receive from your partner, family members, and close friends can make you feel less alone, you may also want to connect with other women who have metastatic breast cancer because they know exactly what you’re going through.
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Research shows that participating in metastatic breast cancer support groups can significantly improve the mood and mental well-being of people with advanced stage breast cancer. Support groups are essentially microcommunities of people in similar life situations who meet on a regular basis (in person, over the phone, or online) to exchange ideas about how to handle difficult issues. They offer a safe space where you can vent your frustrations and fears without worrying about protecting anyone else in the room, says Patricia Moreno, PhD, co-facilitator of the Living Well with Metastatic Breast Cancer Support Group at the Robert H.
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Lurie Comprehensive Cancer Center of Northwestern University in Chicago. “You may hold back from expressing all of your feelings with your family members, out of a desire to shield them from worry,” she explains.
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“In a support group, there is no need to pretend. Everyone there knows what it’s like. It’s totally fine to say you are scared or frustrated or angry about the injustice of it all.”
In addition to emotional support, a good support community can be a way to learn about the latest treatment options available and get tips to manage side effects and cope with the day-to-day hurdles of living with metastatic breast cancer.
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Support groups also offer the opportunity to use your knowledge to help others and, in some cases, lead to deep connections and lasting friendships. “I’ve seen women become very close and come to rely on each other in an intimate way even outside the group,” notes Dr. Moreno.
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How Metastatic Breast Cancer Support Groups Differ from Other Breast Cancer Support Groups
General breast cancer support groups are available, but if your cancer is advanced, you’ll probably want to join a group exclusively for people with metastatic breast cancer. “The issues faced by women with earlier stage breast cancer can differ significantly from those with metastatic breast cancer,” Moreno points out.
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Some of these differences can be painful. “One of the biggest sources of anxiety that women with early stage breast cancer experience is fear of recurrence,” she explains.
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“Women with advanced stage breast cancer [who weren’t initially diagnosed with invasive cancer] have already lived through that fear coming to fruition.”
Women with early stage breast cancer may also be concerned with issues such as preserving their fertility or revisions to their breast reconstruction surgery, which may not be relevant to women with metastatic disease. They also tend to look at breast cancer in a very different way.
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“Earlier stage patients tend to focus on getting through treatment and then going into the posttreatment phase,” says Moreno. “Women with metastatic disease are often dealing with ongoing treatment, which introduces a whole different set of emotional and physical challenges.”
Is Group Support Right for You
Despite the benefits, joining a metastatic breast cancer support group is not always an easy decision. For some people, the idea of introducing themselves to a roomful of strangers and talking about personal issues is off-putting.
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“Some women may simply not feel comfortable expressing their personal thoughts in a group situation,” says Moreno. If that’s the case for you, you may want to try one-on-one peer support.
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Your hospital’s social worker may be able to match you up with someone in your area of a similar background and age. Many organizations, such as Imerman Angels and After Breast Cancer Diagnosis, offer peer mentorship programs in which they will connect you with a person who is further along in her metastatic breast cancer journey than you and can give you advice and support.
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If you’re feeling very distressed or depressed or having significant difficulty navigating issues surrounding your disease with your partner or family, you may want to choose individual counseling rather than group support. “In a support group, you’re surrounded by lots of other women and, as a result, you may not be able to get the attention and resources you need to work through those issues,” says Moreno.
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At some point, you can discuss with your counselor whether adding a support group makes sense for you. How to Find the Right Group for You
If you decide you’d like to join a metastatic breast cancer support group, the first step is to think about what your goals are. Groups vary in terms of size, focus, and format.
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Some key questions to consider:
What are you hoping to get out of a support group? Some groups are more social, connecting people with shared experiences in an open, safe, and casual environment. Others are more focused on tangible skills, such as informational presentations and journals or worksheets to use at home and bring to the next meeting.
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Do you want a meeting led by a survivor or a professional? Some metastatic breast cancer groups are led by professionals (such as a psychologist or oncology social worker) who are trained to lead groups and help members with information and resources.
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Others are led by breast cancer survivors whose personal experiences and support give the group a more intimate feel. What setting works best? Many hospitals and cities, but not all, offer in-person support groups for metastatic breast cancer.
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If meeting in person isn’t an option, you might consider an online group. There are multiple open and closed Facebook groups and other online forums for metastatic breast cancer survivors. They can be a great place to ask questions and exchange information without having to share any more than you want.
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One word of caution: “Not all forums are monitored by medical professionals, so always vet any medical advice you receive online with your medical team,” says Moreno. Once you have an idea of what you’re looking for, ask your social worker if your hospital or medical center has a support group specific to metastatic breast cancer.
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If they don’t offer one, he or she can put you in touch with resources in your local area. Most cities have community cancer support groups that draw people from a number of different hospitals and clinics. You can also search for support groups online or use the American Cancer Society’s support program locator to find groups in your area.
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When you find one you want to try, go to at least two or three meetings before you decide if it’s right for you. “Groups are so organic that any one session may not represent what the group is like,” Moreno says. Every group is different, so it’s important to keep trying until you find one that provides the comfort and support you’re looking for.
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