Rochelle’s story: I’m one piece of an enormous puzzle now, moving towards better outcomes

When Rochelle Hutson was diagnosed with colorectal cancer at just 36, she felt underprepared, to say the least.

Living in Aotearoa New Zealand, Rochelle was juggling, work, study and life as a mum of three. When her partner was posted to Canberra, Australia for his job, she first started experiencing symptoms.

“My only symptoms were an increase in frequency of bowel movements to the point that I would have to hurry home from an hour long walk. They seemed so minor and brief. But after about three months of that building up, I went to the GP,” she said.

The surgeon told her the tumour had probably been there for about ten years.

“Initially I kicked myself that I didn’t respond the first time things felt more frequent. But to learn that it was only three months into the tenth year that there was any sort of symptom, I’ve forgiven myself for that.”

Having studied equity and public health, Rochelle had already understood the impact that age, race, socio-economic status, location and even gender had on people’s experiences of and access to treatment options.

The first block she faced in her cancer journey was her comparatively younger age. Rochelle says she “struck it lucky” with a GP who kept pursuing a diagnosis.

“I was constantly hitting walls because she would say, go and get a CT scan or make a GE [gastroenterologist] appointment, but because of my age and the fact I had so few symptoms, there were no risk factors encouraging people to make prompt appointments. My GP would have to ring them and I’d get in in a few days.”

She also grew passionate about bringing more awareness of the risk of colorectal cancer, also known as bowel cancer, to younger people.

“There’s too many of us getting diagnosed at much later stages, often because our age has been dismissed,” she said.

Age wasn’t the only barrier, Rochelle recounted. Chemotherapy was “massive” and she suffered a lot of post-surgery complications. She wasn’t particularly enamoured with certain clinicians within her treatment team. But her radiation oncologist was, in her own words, “amazing”.

“She was the only female on my team and was just really human about it – she was the only one to bring up the effects of the treatment on hormones and stuff. It was her who knew [and informed me of] the fact that I’m post-menopausal at 38,” she said.

Even as Rochelle herself experienced cracks in the health system, she was also witnessing it happening to others.

“When I rocked up to my first chemo session, there was a girl sitting in the waiting room on the phone either to insurance or talking about insurance. There was clearly going to be financial hardship for her going through her cancer treatment, and I was just thinking, ‘That shouldn’t be a thing.

“It was probably 30 seconds of my life, but it’s stuck with me and shaped the way that I saw a lot of the journey.

“Money and socioeconomic status should not determine how well you come out the other side or don’t.”

She also bristles at the geographic lottery for treatment options. For certain types of cancer, there are far fewer options for chemotherapy treatment in Aotearoa than for their friends across the Tasman. Even something as basic as screening for colorectal cancer was only available starting at 65 years old in New Zealand, compared to 50 years old in Australia.

“Almost everyone’s first comment was, ‘Oh, you’re lucky that you had your treatment in Australia.’”

Rochelle is now determined to use her experience and her skills to make a difference for GI cancer patients like her. She felt propelled to join the GI Cancer Institute and AGITG Community Advisory Panel to advocate for change.

“I’m one piece of an enormous puzzle now – moving, hopefully, towards better outcomes,” she said of her new role.

“I guess I compare it all with breast cancer. All the poo cancers are a lot less attractive, so we don’t get the attention, which means we don’t get the funding, so we don’t get the same research.

“There’s such high prevalence and high mortality with GI cancer, especially with pancreatic cancer, and not a lot in the way of new drugs, so I want what breast cancer has.”

Rochelle, after her cancer treatment.

Rochelle joined the GI Cancer Institute’s Community Advisory Panel in 2023. The Community Advisory Panel is comprised of people with lived experience of GI cancers, whether they have lived with it or cared for someone with it, and advises the direction and priorities of our research. 

Thank you to Rochelle for dedicating her time and expertise with us, and not only making our research more robust, but also more relevant and accessible to people with GI cancers.

Learn more about the Community Advisory Panel

Learn more about colorectal cancer

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