“I can imagine a day when all cancer patients have access to treatments with less side effects, even if their cancers are rare”

By Sarah Hunt, MOHCCN Patient Working Group member

My name is Sarah Hunt, and I was diagnosed with myxoid liposarcoma in 2017—the day before my thirtieth birthday.

My journey with cancer, however, had started seven months prior. I had just returned from a canoe trip through northern Ontario and was checking myself over for ticks when I felt a painless pea-sized lump deep in my upper right arm. I was not initially concerned, but a few weeks later I mentioned it to my family doctor during a routine check-up. Just to be safe, she sent me in for an ultrasound, which was performed a few weeks later with inconclusive results. A follow up was needed, but the only available time was for two months later. During those two months, the pea-sized lump grew into a mass the size of a golf ball.

While no cancer alarm bells were rung just yet, it was decided the lump should be removed since it was growing quickly. I was referred to a general surgeon and saw him locally in Cambridge, Ontario. He decided he didn’t want to touch the lump until he had a better look at it with an MRI. His biggest concern was that it was located near nerves and wanted to make sure he wasn’t going to do damage. It took three months for me to finally get an MRI, which is when I learned that the lump that had been growing inside of me was actually a tumour. Further tests diagnosed it as a rare type of soft-tissue sarcoma, which was very confusing to me as I still felt completely healthy besides a painless lump in my arm.

While my initial diagnosis was painfully slow, my treatments started quickly. Within a couple of weeks, I started 25 rounds of radiation treatments at the London Regional Cancer Centre. The specific treatment I needed could not be delivered at my local cancer centre, so I had to stay in London each week from Monday to Friday. During treatments I started to feel tired, and I also started to have pain in my arm and numbness and muscle spasms in my hand. This continued to get worse as treatments progressed. Following my radiation, I had a surgery to remove the tumour from my upper arm along the brachial plexus nerve bundle. They were able to remove the tumour with clear margins and my treatments were done. 

I thought this was the end of it and life would go back to normal, but many of the problems that started during treatment didn’t go away. Instead, they got worse. This led to many post cancer diagnoses such as lymphedema, chronic pain and secondary dystonia. This is what led me to become an advocate: I figured there must be better ways to diagnose these cancers faster, and better treatments with less side effects. There had to be a way to give people a better quality of life post cancer treatments.

As I have been involved in advocacy the last seven years, I have learned so much about new research and treatments in cancer and see the potential they have for all patients, especially those with rare cancers like mine that may not have been researched as in depth or have treatments yet. This is where I can see the Marathon of Hope Cancer Centres Network being able to step in.

By uniting hospitals across the country, the Network can connect oncologists and researchers who may only see a handful of patients with a specific rare cancer in their careers, allowing them to share data, knowledge and resources. By pooling this data and expertise, research groups can start looking for patterns of how each patient’s cancer developed and how they responded to treatments. This data can also be leveraged to develop better ways to detect, diagnose and treat people with that rare cancer, while educating health care providers and researchers to better identify potential patients.

As the Network keeps on growing and science continues to progress, I can start to imagine a day when all cancer patients, even those with rare cancers, can have quicker diagnoses and access to better treatments with less side effects. I would like all cancers to be seen on a cellular level, so every patient can get personalized therapy, regardless of what type of cancer they have. That is why I continue to share my story and experience with this growing Network.