Social Network Connects Breast Cancer Patients and Survivors

Imagine a Facebook or Pinterest for women with the chronic disease.

  • Share
  • Read Later

October may be National Breast Cancer Awareness month, but women are battling the disease all year long. One in eight women (about 12%) will develop breast cancer at some point, according to federal statistics. That is why Mary Ray, co-founder of MyHealthTeams, launched MyBCTeam (MyBreastCancerTeam), the first social network for breast cancer patients and survivors to connect, share tips, and find solace in one another. Imagine a Facebook or Pinterest for women with the chronic disease.

(MORE: MyAutismTeam: A New Site For Families With Autism)

Each user’s profile displays her age, where she lives, what type of breast cancer she has, and treatments she has undergone. The “Providers” section allows women to share their doctors’ addresses and contact information to help others find the best care. Standard questions like “When I’m having a bad day, I like to…” or “My life has changed in this way…” that users answer on their profiles are designed to help match up women who are going through the same thing. Moreover, the “Meet Others” function allows women to search for users by location, stage of breast cancer, and treatment type.

Under “Q&A,” women can pose anything or browse previously asked questions if they want to learn more about the disease. Ray described one time when a user’s tissue expander (a device used to expand breast skin after surgery) flipped late at night, and she asked MyBCTeam peers if she should go to the hospital right away. Users reassured her that what she experienced was normal, and she could wait until the morning to go to a doctor if she was still feeling discomfort.

“The Scarf Fashion Show” Pinboard / Courtesy of MyBCTeam

Each user has a “Pinboard,” which allows her to post personal photos or inspiring images, messages, or cartoons that she finds on the Internet. Koryn Hutchison (“MamaH”), 48, who hails from Woodbridge, Virginia and has been in remission since 2009, posts pictures of her husband and four children on her Pinboard to show that there is life after breast cancer.

Ida Rosenberg (“Ida”), 55, who lives in Agoura Hills, California and finished her last round of chemotherapy five weeks ago, has “embraced” her disease (Invasive Lobular Carcinoma) and her hair loss, using her Pinboard “The Scarf Fashion Show” to post pictures of herself wearing different scarves to cover her head.

(MORE: Entrepreneur Still Needs Your Help in Fight Against Leukemia)

“Once a fashionista, always a fashionista, I guess,” said Rosenberg. “I have three sons, and they kept asking, ‘How do you look, Mom?’ So I started it to show my friends and family back in New York (’cause I’m an ex-New Yorker) that I look okay because your imagination runs wild when you hear that somebody is going through breast cancer. And I had to fulfill my shopping urges, so I just started buying regular scarves because I figure when all is said and done, I’ll have a great collection of scarves to put around my neck.”

There are many support groups for women with breast cancer, but if women do not feel well enough to attend those sessions, they can log onto MyBCTeam from the comfort of their homes. Even breast cancer survivors who live in constant fear of relapsing can use the site to find other people who are in remission. Users can choose to “Like” a post or give the user “Hugs” if they are having a particularly tough day.

While designing the site, co-founder Mary Ray said she would ask herself, “What would you do in person? Would you go over and hold their hand?”

Rosenberg, for instance, found out that she had breast cancer the same week she was turning 55. “This was my 55th birthday present!” she said. “Oh, it was such a shitty week. My dog died after 15 years on the day before my birthday. Then I was diagnosed with breast cancer. All I wanted was an iPad, and I didn’t even get the iPad!” But she said she got a “great network” of “sisters” instead. She will need plenty of “hugs” when she undergoes her double mastectomy and reconstruction surgery in mid-December.

MORE: Can This Bra Detect Cancer?