20 Years of Rethink: Sylvia’s Impact
7 MINS to read
Sylvia Soo was a fashion-forward 25-year-old, touching down in Canada from her world travels and thinking about what she wanted to do next with her life when she was diagnosed with breast cancer. She had been eager to get out of Edmonton again soon and back to Korea where there was a boyfriend to visit, and instead felt “physically traumatized,” “winded” and “like a broken-winged bird” her first few weeks of her cancer experience.
My first interaction with Sylvia started with an email she sent in May 2009, less than two months into treatment. Subject line: “25 Years Old, I think and rethink breast cancer every single day.”
Rethink had been growing support programming and services specifically for younger people with breast cancer who were scattered across Canada isolated from any other person with breast cancer their own age. At the time, we were also making a big media splash every spring with our Fashion Targets Breast Cancer campaign, and that’s what caught Sylvia’s eye—she was a young woman with breast cancer with a massive shoe collection, including the stilettos that she sometimes boldly wore to chemo despite the nurse’s recommendation to “dress comfy.”
Our Fashion Targets campaign coverage prompted Sylvia to reach out with a passionate offer to volunteer. She also shared some frustration in her note: “Since my diagnoses, I have googled and googled searching for non-profits that I can contribute to. Perhaps most are too caught up with organizational politics to reply. Others have turned me away saying I have to be a one-year survivor. My take on that? Why not try to spread the message from day 1? I’ve started a private blog through Facebook (I heart life) where my friends laugh, cry, and keep in touch with me…as most of them are now spread out throughout the world. Frankly, I’m so tired of hearing nos. I’d rather spread the word, rather than watch the world go round and wait until I’m a “survivor.” Every day that I live… I’m a survivor. I have ideas and I have been journaling my journey through video, through photos and through my online blog. Perhaps there is something we can do together to help others “rethink breast cancer.”
I immediately started up correspondence with Sylvia and when I look back at that original email, I wonder if she had any presentiment when pressing send what her next few years would entail. In addition to gruelling treatment for her initial diagnosis and then a recurrence, Sylvia’s 20’s would include participating in Pulitzer Prize-nominated The Scar Project, putting herself up on the big screen as a subject in two documentaries, gracing the cover of our Breast Fest Film Festival programme, speaking at events and so much more.
I am grateful I got to know Sylvia, who inspired the next phase of Rethink: EDUCATION and COLLABORATION with the community to create solutions for gaps in care. Not only that, Sylvia also inspired us to move into more digital spaces to reach more young people with breast cancer through personal storytelling. Facebook was still new-ish in 2009 and Sylvia was an early adopter, documenting her entire breast cancer experience through journaling, taking gutsy and vulnerable photos and videos, and sharing them on a private Facebook page, and eventually, on her blog, Cancer Fabulous.
The Cancer Fabulous Diaries zine, which Sylvia and Rethink collaborated on, is raw, personal and practical. It’s centred on her own reflections as she struggled to access age-specific information, such as impact on fertility, from her medical team while simultaneously deflecting all the unhelpful unsolicited advice from family, friends and even strangers. All the questions and tips and tricks in the zine on things like chemo prep and questions to ask your team, are exactly what Sylvia thought about as she was going through each step of treatment.
Interspersed between Sylvia’s intimate diary entries are Q&As with healthcare professionals, including Sylvia’s own surgeon, Dr. Kelly Dabbs, and our own Board Member, Dr. Christine Brezden-Masley, who is always up for these types of collabs. Sylvia also interviewed eight other young people with breast cancer to showcase the diversity of experiences, giving a glimpse of their take on the intersection of single life, love, marriage, besties, babies, fashion, body image, and careers with breast cancer.
Of course, there was learning and growing pains on both sides. Sylvia was young and Rethink was a still a young organization. We didn’t have experience playing the part of publisher to her creator mindset and the scope of the project grew and grew. So, I got to know Sylvia very well over months and months of back-and-forth emails, conference calls, and some in-person visits.
Like many performers, writers, artists and other creatives, Sylvia’s a bit introverted. I remember first meeting her in person, it was like meeting a shy, young, beautiful model backstage at a fashion show. Like she’d just walked the runway in an outrageous fashion and fierce hair and make-up and now was quietly and warmly fielding my questions post-show in her natural beauty and the kind of perfectly put together casually stylish outfits models seem to live in.
Even now, when Sylvia and I catch up, I’m always arrested by her calm, soft-spoken, soothing demeanour given her attraction to bold, somewhat daring projects. I’d also call her an old soul. And I appreciate so much all that she’s generously shared with us and given to Rethink. We learned so much working directly with a young, creative person and specifically one who was also processing the trauma and on-going impact of breast cancer treatment at such a young age. And the labour of love that was The Cancer Fabulous Diaries zine resulted in something that everyone who touched its birthing is truly proud of. More importantly, it continues to help so many newly diagnosed breast cancer patients under 40, which was the goal of the project.
Sylvia was also a muse for our evolution into digital content. Specifically, the evolution of our Live Laugh Learn in person support and education events reaching a small group of women in a handful of cities into stylish, well-produced and informative videos hosted on our YouTube channel. For young people with breast cancer by young people with breast cancer, we created a beautiful video with Sylvia around the benefits of journaling.
While undergoing radiation, Sylvia took an art therapy course and discovered leather work. She immersed herself in learning the craft and now designs her own stunning, minimalist leather pieces. These days, Sylvia’s creative energy is primarily poured into her own company, Sylvia Soo. She’s quietly got something big and exciting that she’s working on and it’s looking like there just might be a new way for us to collaborate on an innovative initiative in the new year. So excited and grateful. Thank you, Sylvia. Thinking back on your very first email to Rethink, we certainly did connect and help “rethink breast cancer” together. — MJ DeCoteau
MJ DeCoteau, Founder + Executive Director of Rethink Breast Cancer. At 22, after losing her mother to metastatic breast cancer, MJ was hard-pressed to find relevant information that was not scary and overwhelming about her own risk factors. She quickly realized that young people were in the dark about breast cancer simply because they weren’t being targeted by awareness campaigns and other efforts.
By 2001, she brought together a group of innovative, energetic, and creative minds to found Rethink Breast Cancer, putting young people concerned about and affected by the disease in the spotlight for the very first time. Today, MJ leads Rethink’s small but dynamic team of staff and volunteers dedicated to creating resources, campaigns, events, research, and advocacy initiatives that help young people live better and live longer.
