Revolutionizing Patient Support through Social Media
PATIENT PERSPECTIVE

In France, My Breast Cancer Network’s website and app enable patient connection, empowerment, and support 24/7.

Cancer patients have long logged onto search engines to access crucial, sometimes lifesaving information. Searching the flood of data, though, can be an exhausting and lonely experience.

This was true for Laure Géroult Accolas, a Frenchwoman diagnosed with breast cancer in 2009 at age 39. She felt isolated as a younger patient and had difficulty finding resources, like information on the disease itself or on lighter topics such as beauty care and physical therapy. In 2014, she decided to do something to help others like herself: she founded Mon Reseau du Cancer Sein, My Breast Cancer Network, a social media platform for French-speaking breast cancer patients, wherever they might live, in cities, countryside, or abroad—and more importantly, run and moderated by patients.

She hoped that fewer women would struggle as she did. “I wished I could exchange stories with other women my age,” Laure says. My Breast Cancer Network links women in a secure space where they can share concerns and find support. “It’s important to me that real connections are created,” says Laure.

There are many ways to use My Breast Cancer Network. The user chooses her level of participation, whether asking questions, reading available medical or self-care information, learning about studies, or finding local get-togethers.

Paris communications professional and mom Catherine Ubaysi serves on the board and represents the network at national and international congresses. She credits the network with helping her quickly access resources and bond with women facing similar challenges. When she was diagnosed with metastatic breast cancer (MBC) in 2015, Catherine, like Laure, had enjoyed a full professional and family life, and was adept at learning new skills and cultures.

“All the doctors, one after the other, they said, ‘It doesn't look good.’ When you've got several people telling you that, you know it could be crap!” she says. When she finally heard her diagnosis, she was ready to seek information, make connections. She discovered My Breast Cancer Network, perfect for a self-professed “social media freak.”

BC can complicate a woman’s sense of identity, and the network provides a safe space for members to confront this. “There’s no way you can't be reminded every day that you've had cancer,” Catherine says. “You need to find a way to deal with that. So many of us have found help accepting that we’re patients, yes, but we’re women first.”

Empathy and openness are key. “You can wear your heart on your sleeve and say whatever you need. You won’t be judged. You can ask personal questions, about your sexuality, losing your hair, feeling sick all day. You can ask complex questions about your future and what's going to happen. It's easier to talk through a screen.”

With its mobile app, My Breast Cancer Network connects patients with on-the-go support. Users post messages from the waiting room, while having a scan, or during chemo, Catherine says. “It's a massive help for us to know we won’t be left alone.”

Feeling misunderstood can be especially difficult for women with MBC. “A lot of people think with breast cancer, you’ll be fine,” she says. “But when they hear about metastases, they think death— they think there’s nothing in between.

“We tell them there is something in between: it’s my life. We're not dead women walking—we're just women, having a life. It could be long, fulfilled, rewarding. That's what we hope for. For some women, MBC can be very hard, very painful. For some it’s more manageable. The thing is to live with your disease as well as you can, as optimistically as you can.”

Photo: My Breast Cancer Network founder, Laure Géroult Accolas