Building a Breast Cancer Community

When Kathy Townsend, from San Antonio, was diagnosed with metastatic breast cancer in 2015, the only thing she could think about was how long she would live. That quickly changed when she heard from her ex-sister-in-law, who had also been diagnosed the year before.

“We had been out of touch. But the minute she heard the news, she called me and said, ‘It’s going to be OK.’ Hearing that from someone in my situation gave me the hope I needed to pick myself up and start taking it one day at a time.”

Soon after, Townsend joined an online support group for women with the condition and attended a conference hosted by Living Beyond Breast Cancer, a nonprofit group. “Connecting with other women, as well as doctors and researchers, makes a world of difference in how it feels to live with this disease,” Townsend says.

Research shows that social support may actually play a role in helping women with breast cancer live longer. The link isn’t clear, but experts say connecting with others is a good way to stay informed and learn more about self-care, treatment, and other issues related to the disease. “Arming yourself with information can help ease your mind and empower you to be your own advocate,” says Stephanie Bernik, MD, chief of surgical oncology at Lenox Hill Hospital in New York City.

Connecting With People Who “Get It”

Your health care team will support you by offering information and advice. Your friends and family can also lend a hand and listen to your concerns. But experts say connecting with other people with metastatic breast cancer is especially helpful.

“No one understands what it is like to live with cancer better than someone else who has cancer,” says Kelly Lange, who was diagnosed with metastatic breast cancer 15 years ago. Soon after, she started attending METAvivor support groups around her hometown of Annapolis, MD. Now she volunteers for the nonprofit. “When you’re newly diagnosed, it can be very reassuring to meet someone who has managed to live well with the disease.”

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Tarah Harvey, of Austin, TX, agrees. “When I was diagnosed a little over a year ago, I was breastfeeding my baby. I didn’t know anyone else in my situation. My husband is super positive, as is my team at M.D. Anderson Cancer Center. But connecting with people like me allows me to be really open about my fears,” she says.

Groups for metastatic breast cancer are often different from other support groups, says Karen Whitehead, a licensed master social worker near Atlanta. She works primarily with women with breast cancer and runs groups for those with metastatic disease.

“You tend to connect quickly with other members. These women don’t pity you,” she says. They understand what life with breast cancer is like and “what it means to want to be more than just your disease.”

They’re also great places to get advice. “If you’re dating, how do you deal with that? What about constipation from chemo? Someone in your group has probably already been through it and can help,” Whitehead says. When Harvey asked about dealing with treatment-related heartburn in an online support group she belongs to, “I had 100 different replies in no time.”

How to Find Your Breast Cancer Community

Cast a wide net. To find a group, Whitehead recommends asking your health care team and local oncology center for suggestions. The American Cancer Society, the Young Survivors Coalition, Living Beyond Breast Cancer, CancerCare, and Cancer Support Community can also connect you with in-person or online groups.

You can also try social media. “I went on Facebook to find a group specific to breastfeeding moms with MBC. I found one, and now I belong to five or six different online groups for women with MBC,” Harvey says.

If you’re not finding what you need, think about creating your own community. When Bridgette Richardson Hempstead was diagnosed 22 years ago, “I didn’t know anyone with the disease at the time, let alone another black woman in my situation.”

Hempstead’s can-do attitude impressed her breast surgeon so much that she asked if she could connect Hempstead with another patient. “Of course I said yes. Soon I was regularly talking to seven other women like me,” says Hempstead, who lives in Seattle.

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Before long, Hempstead had started Cierra Sisters, a nonprofit organization for African-Americans with breast cancer, which holds support group meetings and events and supports breast cancer research. “Metastatic breast cancer takes lives, and that’s the saddest part. But meeting with other women helps you concentrate on living instead of dying,” Hempstead says.

Keep an open mind. “The biggest misconception is that groups for metastatic breast cancer are going to be pity parties and really negative,” Whitehead says. While it’s true that tough topics come up, “the main focus is how to live the best you can with this disease.”

Curious but hesitant? “You can try a group once or twice without committing forever,” Whitehead says. “You might be surprised by what you find.”

Make yourself a source of support, too. There will be times during and after treatment when it’s all you can do to care for yourself. But when you’re feeling up to it, think about supporting others, too. “Sharing your knowledge gives back control to women who might feel like they have none. At the same time, pouring hope and joy into someone else fills you with joy,” Hempstead says.

“If the women who supported me after my initial diagnosis hadn’t been there, I don’t know that I could have gotten back on my feet as fast as I did. Now I give back to other women,” says Townsend, who’s a community connector and help line volunteer for Living Beyond Breast Cancer. “When you’re first diagnosed, you feel alone, but there’s actually so much support. The most surprising thing about this disease is how many random people really do care.”

WebMD Feature Reviewed by Laura J. Martin, MD on December 01, 2018

Sources

SOURCES:

Kathy Townsend, community connector for Living Beyond Breast Cancer.

Kelly Lange, volunteer for METAvivor.

Tarah Harvey, Austin, TX.

Bridgette Richardson Hempstead, founder, Cierra Sisters.

Karen Whitehead, MS, DCC, CCFP, licensed master social worker, Karen Whitehead Counseling and Turning Point Breast Cancer Rehabilitation, Roswell, GA.

Stephanie Bernik, MD, chief of surgical oncology, Lenox Hill Hospital, New York.

Cancer: "Postdiagnosis social networks and breast cancer mortality in the After Breast Cancer Pooling Project."

Metastatic Breast Cancer Network: “Incidence and Incidence Rates.” 

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