Building the community I wish my mom had: MJ’s story

_“My mom died of breast cancer when she was in her early fifties and I was 22. Losing her so young was devastating. It made me want to do something, anything, to make sense of it, to create positive change. Now that I’m in my fifties myself, and my daughter is 22, that impulse is stronger than ever.

Breast cancer was treated like a grandmother’s disease back in the ’90s. Well-meaning people gave me pink ribbon merch, jewellery, and knick-knacks that had nothing to do with my usual style. I remember picking up a drugstore pamphlet with this watercolour nude turning away into darkness, like she was hiding in a dark corner to do a breast exam, with the sort of ugly medical fonts you’d find in a nursing home. My grandmother had also been diagnosed with breast cancer, and I was thinking, “Does this run in the family?” But the unspoken messaging of most of what I saw about breast cancer just had no connection to someone my mom’s age, let alone mine.

“Breast cancer is rarer under age 40, so in addition to having difficulty even getting diagnosed, the stories we kept hearing involved feeling isolated both from their own peers…”

After grad school, my husband and I moved to Toronto, both with internships, his in the music industry and mine at Toronto Life. One night I got to cover Fashion Cares, this glamorous AIDS fundraiser bursting with drag queens and wild fashion and energy. Meanwhile, every breast cancer event I’d seen was thoughtful but traditional and quite sedate. Why couldn’t raising money and awareness for breast cancer be fun, too? That question was the spark that became Rethink Breast Cancer.

We started by recruiting our friends and family to help us throw parties for our extended social circle at $50 a head to raise a bit of money for research. I have three older brothers and one is a brilliant pathologist and cancer researcher. He helped me set up an incredible research grants program. We pulled in favours from anyone we could.

“When she was sick, my mom had close friends but she didn’t have a community of other women her age with breast cancer. I now find myself at the centre of exactly the community I wish had been there for her.”

We got a lot of attention right out the gate for our fresh approach. What we weren’t expecting was for young women with breast cancer to start reaching out. Breast cancer is rarer under age 40, so in addition to having difficulty even getting diagnosed, the stories we kept hearing involved feeling isolated both from their own peers and also at the hospital, where everyone else was their mom’s or grandmother’s age. These women weren’t getting the information and support they needed, navigating a diagnosis at a time of life when many were just starting careers, dating, thinking of starting a family, or juggling treatment while raising young kids. Their needs were huge but they were falling through the cracks. We soon found ourselves trying to fill some of those gaps. 

We began by co-funding a peer support program. I quickly saw what a difference these programs could make. Before long, Rethink evolved into delivering programs ourselves, hosting conferences, and creating resources — we’ve even made documentary films and had an annual film festival called Breast Fest. Over time, we expanded into advocacy, which is where my passion and focus are today. As different gaps in care come to light, cancer treatments change, and culture changes, we’ve continually evolved to meet the moment. But it all started with building a community. For me, that’s how everything comes full circle.

Losing my mom was my original “why” for getting involved in the breast cancer world. When she was sick, my mom had close friends but she didn’t have a community of other women her age with breast cancer. I now find myself at the centre of exactly the community I wish had been there for her. But the more people I meet in this community, the more stories I hear, the more my “why” keeps growing and evolving. Rethink wouldn’t exist if it weren’t for my mom’s story. But it’s the people I’ve met since, and the people I’ll meet tomorrow, that keep us moving toward the next challenge.”

Click here to learn more about Rethink Breast Cancer.