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Heather was not always comfortable speaking publicly about her disease, but she sees the need for more awareness about metastatic breast cancer, and to advocate for more research.

This is Heather’s story.

Diagnosis: I was diagnosed with Stage 2 breast cancer 12 years ago. I had surgery, did 6 months of chemotherapy and then hormonal treatment. But at the 5-year mark I was diagnosed with metastatic breast cancer; tumours had spread to my lungs.

Treatment: I’m on my fifth course of treatment now. My first one lasted 2 years. The next one lasted a year and a half. The third a year. The next one only 7 months. The one I’m on now has lasted 13 months.

Right now, I fly to Boston every month to be in a clinical trial. I live in Calgary so it’s a long trip. I started looking for clinical trials 3 years ago. The cancer had progressed twice, and I knew I wanted to figure out what new research was being done because…well, we were running out of options. My search became my full-time job – I built spreadsheets, listened to webcasts and read research papers.

Clearly my first choice would have been a clinical trial close to home, but there was nothing in Calgary. What I didn’t know about clinical trials is they often exclude heavily pretreated people. So, if you’ve had previous courses of treatments, it can be hard to get into a trial. Nobody told me that at the beginning. But I was lucky – last year I saw a post on a discussion board about this trial in Boston.

Living with mBC: I am a part of a support group. We meet weekly to share stories of our treatments and side-effects, but we also talk about our lives. But since I joined 4 years ago, 13 of my friends from this group have died. That’s why I now feel the need to speak out in their memory and advocate for more research.

All people hear about breast cancer is about mammograms – ‘oh, if I have a mammogram I’ll be cured of cancer.’ That’s the kind of the message they hear. What they don’t hear is that one of the real reasons women are living longer with cancer is because of the new drugs that have come up in the last 15–20 years. They don’t hear that early detection can only do so much. For the unlucky, cancer can return years later – 5 years later, 7 years later, 10 years later – and the doctors and researchers don’t know why. I had a very small tumour. They took it out, I did all the treatments, and it still came back.

There’s a very insightful analogy I read somewhere that sums up the way we ignore metastatic disease: imagine someone is drowning in a pool and the rescuers come and start teaching the people on the deck how to swim. Basically, everyone wants to put all their hopes into prevention and screening instead of research and new treatments for those LIVING with mBC.
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