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Second in a two-part series on the continuing evolution of support groups.
Itâ€™s no secret that the Internet is the biggest revolution in media since the printing press, and it is shaking up the health care field just as it has every other industry. From researching the latest cancer therapies to seeking guidance on everyday lifestyle and emotional issues, you probably consult the Web almost daily.
And while online support networks are not meant to replace advice from your doctor or therapist, they are meant to provide patients with broader choices when it comes to quality emotional assistance. So, if youâ€™re not getting everything you want from a traditional face-to-face support group or canâ€™t find one that suits your fancy, consider supplementation with a high-tech alternative. Their flexibility, anonymity, and variety could be just what youâ€™re craving.
While some women treasure the intimacy of in-person connections, others find online groups, forums, discussion boards, and informational Web sites just as diverse and fulfilling. Their atmosphere of self-guided discussion can be a welcome relief to patients facing a daunting new world of challenges, feelings, and questions.
Just as with traditional meetings, there are online options adapted for almost every issue, interest, demographic, and ethnic group. Good places to begin your search include The Association of Online Cancer Resources, Cancer Support Community, and CancerCare. See Online Resources at the end of this article for a listing of additional support resources.
For one young patient in Brooklyn, online support became a lifeline. “My concerns are specific to being of child-bearing age and still hoping to have children,” she explains. “And I felt a strong desire to connect with others who felt the same way. The hospital group was a good start, but not something that worked after a couple of sessions. It was not a love connection.”
Her perfect match turned out to be the Young Survival Coalition, an international organization dedicated to young women and breast cancer. Featuring discussion boards, survivor stories, an affiliate program, volunteer opportunities, support, advice, and friendship, it covers all the bases of a traditional support group in an online setting.
As the most frequently diagnosed cancer among African American, American Indian/Alaska Native, Asian/Pacific Islander and Hispanic/Latina women, breast cancer does not discriminate. The disease can be particularly difficult for these women, as language barriers and cultural traditions can add another layer of complexity to a diagnosis.
Organizations like the American Cancer Society offer programs to address these challenges, including the Asian and Hispanic Tell a Friend programs to encourage regular mammograms, and the Circle of Life program for Native American women. For African American women seeking connections, The Sisters Network and the African American Breast Cancer Alliance have committed to increasing awareness about breast cancer within the African American community.
The U.S. Department of Health and Human Services Office of Minority Health has published an excellent breast cancer resource guide for minority women, available at http://minorityhealth.hhs.gov/assets/pdf/checked/1/Breast_Cancer_2009.pdf.
Birds of a Featherâ€¦
For women seeking others with a similar diagnosis, help is just a click away. HER Move, for example, targets women in all stages of HER2-positive (Human Epidermal growth factor Receptor) breast cancer, providing a connection between survivors and patients who have either personally or professionally contributed to the fight against the disease. In addition, HER Move and sites like it strive to help women live active lifestyles during treatment by featuring topics on mind/body balance, relationships, intimacy, travel, and food. Thereâ€™s even a dedicated section for caregivers and family members.
Similarly, inflammatory breast cancer patients can share stories and struggles while learning from others at The Inflammatory Breast Cancer Foundation and through the Inflammatory Breast Cancer Research Foundation. Lymphedema patients can do the same through the National Lymphedema Network. Comparable forums and discussion boards exist for nearly every type of breast cancer.
Also prime candidates for Web-based support are homebound patients experiencing side effects from therapy. For them, online communities can be the simplest, most effective way to find others living through similar challenges. The same goes for professional women balancing work, family, and a cancer diagnosis. Cancer and Careers is an informative site for help with all aspects of the disease and how it relates to women’s personal and professional lives.
The Internet can be a godsend for women living in areas without a robust in-person support network. According to a reader from Ft. Worth, TX, who commented on Part I of this series about traditional support options, even larger cities have some catching up to do. She found Fort Worthâ€™s few groups to be extremely targeted â€“ with none fitting her situation as a 50-year-old widow far younger than the general support groupâ€™s members, yet older than those in the young womenâ€™s groups. “I have spent many hours on the telephone and Internet as Iâ€™ve gone through chemo,” she says, and without those alternatives would have felt “totally alone.”
Live talk radio shows like The Group Room are a different option for women seeking self-guided support, and many can be accessed online via live audio streaming. With a free, Web-based archive of more than 700 shows, this program features information on all types of cancer, though breast cancer is a common thread. Presented in an open format where themes are driven by the callers, you can tune in to the weekly radio broadcast, find it broadcast on XM Satellite Radio, listen over the Internet, or download show podcasts through iTunes.
Additional breast cancer podcast series are available through the American Cancer Societyâ€™s Web site and cover topics including diagnosis, treatment options, surgery and recovery, chemotherapy and radiation, survivorship, and support. Youâ€™ll hear breast cancer survivors share their own thoughts, feelings, and ideas from their own experiences. An iTunes search will yield many additional selections.
Meet and Greet
Social support for todayâ€™s breast cancer patients is a far cry from the limited resources of the past, and CancerMatch is a powerful survivor networking site for those interested in social connections. Youâ€™ll meet people from all over the world with cancer, and have the chance to create a circle of friends who share your diagnosis, mentor others, write your own blog, join a live or person-to-person chat, or even lead your own live chat or support group.
But as the trend toward online support networks continues to evolve and online friendships form, donâ€™t women miss out on the lasting relationships traditionally forged through face-to-face connections? Not necessarily.
In fact, friendships that begin online and develop anonymously over a period of months or years are now resulting in individual meetings of smaller local groups or individuals, reunions of online groups, or gatherings to participate in a 3-day walk or other athletic event. Young women active in the Young Survival Coalitionâ€™s community, for example, often gather for the annual Young Survival Conference to meet online friends and experience three days of programming focused on every phase of the breast cancer journey. The point? Online doesnâ€™t have to equal anonymous.
As a woman battling breast cancer, youâ€™ve no doubt learned that sometimes the best help is self-help. And while it can be hard to ask for support, you can find it yourself with a little time and effort.
The American Cancer Society Cancer Survivors Network: www.acscsn.org
The American Cancer Society Breast Cancer Podcast Series: www.cancer.org/listen
The Association of Online Cancer Resources: www.acor.org
Cancer and Careers: www.cancerandcareers.org
Cancer Match: www.cancermatch.com
Cancer Support Community: www.thewellnesscommunity.org
HER Move: www.hermove.com
Inflammatory Breast Cancer Foundation: www.ibcsupport.org
Inflammatory Breast Cancer Research Foundation at: www.ibcresearch.org
National Lymphedema Network: www.lymphnet.org
Native Peopleâ€™s Circle of Hope: www.nativepeoplescoh.org
Sisters Network: www.sistersnetworkinc.org
The Group Room: www.vitaloptions.org/grouproom.htm
Young Survival Coalition: www.youngsurvival.org
Please also visit the Support Links section of TheBreastCareSite.com for more online resources specific to your needs.
last updated: October 2011