Circle of Support
If cancer continues to exist there will continue to be a need for psychosocial support for patients and their families. But support like cancer treatment that is tailored to the individual, is not a one size fits all approach. Support needs to be in the right mode at the right time for it to be effective and it has to fit the tailored needs of the individual. In Rethink Breast Cancer’s case, the young woman who is busy – raising a family, dating, finishing school or starting their career. I have been managing Rethink’s support and education programs for almost seven years and often hear from young women, “when do I actually have time for support? When do I get to have the luxury to think of myself and what I need?”
It became very clear that we needed to “rethink” support to meet the needs of the modern young woman. And so, we did what we usually do by thinking boldly about what a new kind of support group would look like.
If you had told me four years ago that a Facebook group could provide critical support for young women going through breast cancer, I may have secretly rolled my eyes. Being a Gen Xer and trained in providing front-line counselling, my philosophy on providing compassionate support has always been the closer in proximity, the better.
A New Approach
When Rethink made a strategic decision in 2014 to go digital and wrap-up their front-line support programs for young women with breast cancer, I knew it was the right choice for an organization that already excelled in speaking to the masses. I also knew that women with breast cancer who wanted one-on-one peer support or group support would find it elsewhere through organizations like Wellspring and programs in psychosocial oncology in the hospitals. These programs would not be in unique locations like Lululemon or have unique programming that makes sense for younger women like Rethink’s, but they would provide that personal connection that some crave. Finally, I also knew that the majority of the population we served were on social media – daily, hourly, always.
Yet I still secretly rolled my eyes when we started to advertise Rethink’s Young Women’s Network (RYWN) and its closed Facebook group exclusively for young women with breast cancer.
The group started small (under 200 women from across Canada) and with some internal questions…What about the people who were not on Facebook? How were we going to ensure those who wanted to sign up were younger women with breast cancer? What about moderating the conversations and content in the group? What makes our group unique from the other cancer FB groups that were popping up? How would we grow the group and sell it to healthcare providers as being a real source of support for their patients? How would group members connect with the organization as a whole and continue to enrich our work through volunteer opportunities? Were women going to feel truly supported? What happens if members have a major health status change and share that with the group?
Although we had a good strategy in place to grow this community, this was new territory for me. I accepted the challenge and the answers to these questions were slowly revealed – some through trial and error and some through insights from other young adult online programming that hopped on the digital train.
The group is almost four years old and it is thriving. We are now at almost 700 members who are mostly from Canada, and also women from remote and rural areas from other parts of the world. They are asking questions, offering their best advice and support, sharing information about coping with treatments and meeting up with each other in their communities. For many members the group has been a lifeline from diagnosis to years after treatment, and especially for those going through lifelong treatment with metastatic breast cancer.
What makes RYWN unique?
Firstly, the group is moderated so that we can ensure people are getting the specific support they need and that the information shared is credible and evidence-based. Many Facebook groups are a free-for-all when it comes to non-evidenced based cancer theories and treatment. We think it is important that women diagnosed with breast cancer are armed with accurate information so they can make well-informed treatment decisions at every stage.
We also want to ensure the group is a safe space for all, including those with metastatic disease. Young women with breast cancer have higher rates of an MBC recurrence, even when they do everything right when it comes to their diet, lifestyle and exercise. Since the group is mixed with all stages, it’s important that we are mindful of inaccurate information when it comes to an MBC de novo diagnosis or recurrence so that women are not shamed into thinking they did something specific to cause their cancer.
This inclusive community of all cancer stages is somewhat cutting edge in patient support. Most support programming separates those with early stage cancer from those with stage 4. Our rationale is that those with MBC need the support of the broader breast cancer community, and those with early stage should be aware of all facets of the disease so once again they are armed with information. Also, if they should find themselves with a recurrence, they know they have an incredible community of support to come home to.
Now I am now standing back in awe – the connections these women are making and the support they are giving one another is real and beautiful.
A recent RYWN post:
Can I just say how wonderful RYWN is for support. After I posted about my rather depressing mood I had one person drop by with coffee and 2 others contact me to get together. Only people who have had cancer get what it’s really like. Thank you so much for the support ❤-S.L.
For the past 7 years, Shawna has been managing Rethink’s support and education programs for young women with breast cancer, using her clinical expertise to create and administer programs that have a national reach and global interest.