Social Network Connects Breast Cancer Patients and Survivors

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

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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.

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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.

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“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.

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14 comments
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nanhaus
nanhaus like.author.displayName like.author.displayName 2 Like

I was so happy to have found my BC Team. I love the fact that you can always find someone who is going through the exact same thing you are.  We all have such diverse stories but at MyBCTeam, you can count on meeting someone who knows exactly what you're going through because they have the same diagnosis, stage, treatment and even same age.  That is so important because you are making real connections with people who are just like you and we encourage each other along the way. Breast cancer can feel so isolating at times but on this site, you stay connected without leaving the house. Ida is one example of these beautiful people who encourage and inspire others on this site with her experience. We share stories, we share fashions, we share providers and we share bad days too! We all learn from each other!  Thanks Ida!

NancyLynn
NancyLynn like.author.displayName like.author.displayName 2 Like

I was lucky enough to find MyBCTeam shortly after being diagnosed with breast cancer this past June. Doctors give you a ton of reading material, which can be scary and overwhelming. Also, my entire family (and my husband’s) lives 2500 miles away! With the girls on MyBCTeam, I don’t feel so alone. Their encouragement helped me stay positive and get through my double mastectomy. Finding out I would need chemo was another blow, but my sisters have provided straightforward, realistic advice that has eased my anxiety about beginning this next phase of treatment. I look forward to logging on every day to see how everyone is doing, share my day and thoughts, and to give (and receive) advice and comforting words.

KristyDavis
KristyDavis like.author.displayName like.author.displayName 2 Like

A great network of sisters for sure! It's a wonderful site to support others and get support. There is a lot of understanding, encouragement, advice, and "hugs". It's a wonderful site for those who are going through treatment, and for those of us that are done and just need a little support dealing with life after cancer.

P.S. Ida's Scarf Fashion Show is AWESOME!

IdaGreenRosenberg
IdaGreenRosenberg

@KristyDavis I couldn't agree with you more, support really never ends. Especially when you have to adjust to the life after cancer, or as I think of it.. The New Normal

motherspreciousgems
motherspreciousgems like.author.displayName like.author.displayName 2 Like

This forum is unique in that it is strictly for breast cancer survivors and those at any stage of disease or phases after treatment ends. The photo upload feature allows for closer connections with members and you are sure to find another woman whose story closely resembles your own. You say to yourself, there's someone who understands. When everyone else in your life doesn't "get it", they do.

IdaGreenRosenberg
IdaGreenRosenberg

@motherspreciousgems Unless someone has been touched by breast cancer they can't quite understand how we are feeling. As much as our loved ones and dear friends can empathize only our fellow survivors have that true understanding.

NancyShieldsWing
NancyShieldsWing like.author.displayName 1 Like

MyBCTeam has been a godsend to me. I am a 1 year breast cancer survivor. I wish I would have known about this site when I was newly diagnosed. There are so many amazing women on this site. There are people there to help pick you up when you are having a bad day, answer questions for you, give you suggestions on questions to ask your doctors. These are real people who have experienced cancer in one way shape or form. I have made friends on this site that I know will be my lifelong friends. We share something in common. None of us asked for this crazy thing called cancer to change our lives. But, we can all find comfort in knowing that we are not alone. I would highly recommend this site for any women who has had or has breast cancer. 

IdaGreenRosenberg
IdaGreenRosenberg

@NancyShieldsWing We are a worldwide sisterhood that shares a bond few can understand. From the bad comes good, and the friendships we have instantly formed will never be broken.

IdaGreenRosenberg
IdaGreenRosenberg like.author.displayName like.author.displayName 2 Like

Great article Olivia thanks for including me in it. I'm available for national tours after the first of the year (LOL)

huntman
huntman

Great idea however it is not the first social media platform for breast cancer patients. www.CancerConnect.com is the leading social network for all cancer patients and caregivers, has been around for over 3 years with over 15,000 cancer patients already supporting each other. CancerConnect is used by Memorial Sloan Kettering Cancer Center, Loyola, Harvard (Dana Farber Cancer Ins), Ohio State, Roswell Park and other leading cacner centers and clinics.

C

IdaGreenRosenberg
IdaGreenRosenberg like.author.displayName like.author.displayName 2 Like

@huntman Yes CancerConnect is another wonderful "social media platform for breast cancer patients" but who doesn't need more wonderful in their life!!!  When I was first diagnosed I checked out many sites including CancerConnect but I was looking for something less formal and something that only involved women with breast cancer. I liked the feeling as if I was sitting around the table talking with a bunch of my friends about our breast cancer that MyBCTeam gave me. It was comforting knowing that I was with women who were going through or had breast cancer; we automatically understand each other.  How lucky we are to have the ability 24/7 to go to our computers and find our friends in the support group we participate it. Regardless of what site we choose, we are online support groups of women helping each other through the ups and downs of breast cancer. For me, MyBCTeam is a "social media platform for breast cancer patients" that focuses truly on that. 

nanhaus
nanhaus like.author.displayName 1 Like

@IdaGreenRosenberg @huntman Totally agree with you Ida!

IdaGreenRosenberg
IdaGreenRosenberg

@nanhaus   I think @huntman really just needed a HUG. When he replied to my comments he said he had cancer and was feeling very tired when he posted his comment. Maybe if he had  the option of being part of a site like myBCTeam that deals with just his type of cancer he would have understood just how wonderful it is for all of breast cancer SURVIVORS!