Research looks into bowel cancer in younger people as early-onset cases increase

A 21-year-old Pasifika woman with a family history of bowel cancer and symptoms was refused for a colonoscopy; five years later she was diagnosed with stage three rectal cancer.

Amelia Noyes is just one example of a study into young New Zealanders with bowel cancer who are often misdiagnosed, refused and wait months to find out what's wrong.

Research by the University of Otago Faculty of Medicine and Bowel Cancer NZ surveyed 353 people who had colorectal cancer before the age of 50.

Early-onset bowel cancer is rising rapidly - around 350 Kiwis under 50 are diagnosed each year, and a third present with late-stage, incurable disease.

The study in the New Zealand Medical Journal found half of the people waited more than six months from seeing symptoms to a diagnosis and around 20 percent of respondents made four or more healthcare visits before referral.

The study showed nearly 32 percent were misdiagnosed and that 7.1 percent had a colonoscopy referral initially declined.

Noyes knows the feeling, went to the GP with symptoms at the age of 21. Her mum had just died of bowel cancer at age 56. Her maternal grandmother also died with the disease in her 80s.

Because of her age, her referral for a colonoscopy was declined.

It took five years for her to get one.

"That's when my seven-centimetre rectal tumor was discovered along with 12 pre-cancerous polyps."

At age 26, she was diagnosed with stage 3 rectal cancer, which had spread to her lymph nodes.

The article said frequency of an early-onset colorectal cancer has increased globally over the past two decades while stabilising or declining in older age groups. Research showed one in 10 cases of colorectal cancer (CRC) worldwide now occured in people under 50 years.

The study of young people diagnosed with the cancer showed there was also a lack of support services.

Fertility and sexual side effect counselling were uncommon, with 12.8 percent of people offered information tailored to younger adults.

Cultural support was offered to only 7.6 percent of people.

Noyes was able to have her eggs and some embryos frozen but due to the radiation treatment to remove the cancer, she will never be able to carry her own pregnancy and will need a surrogate.

"I've always been a family person, and I've always wanted to have a big family. To have that sort of dream of being a young girl, always wanting to grow up and marry someone and become a mother, that dream's kind of been cut short for me."

Of the group surveyed, nine were under 30 when they got the diagnosis, 106 people were aged between 30-39 and 238 between 40-49.

Mentally, Noyes said going through her treatment as a 26-year-old was tough.

"You're surrounded by a lot of people that are quite older than I.

"There was a lot of people that, have lived a life or have had children, they're in their 50s, 60s plus.

"It felt quite lonely and quite isolating not having someone around the same age as me to share that journey with."

The most common symptoms prompting medical consultation were rectal bleeding in almost half of respondents followed by abdominal pain and then change in bowel habits.

Noyes said her main symptom was blood in the stool all the time, and jumping between diarrhoea and constipation.

Doctors suggested Noyes had haemorrhoids or anal fissures and suggested she eat more fibre or lose weight.

The study showed misdiagnoses ranged from IBS, food intolerances to ulcerative colitis - with more than half given a vague gastrointestinal or stress-related explanations.

Bowel Cancer NZ's chief executive Peter Huskinson, said financial pain was just another part of the process.

Almost 60 percent of respondents took extended leave from work or study after their diagnosis, while almost half experienced financial hardship from treatment costs, lost income or additional family expenses.

Noyes managed to work throughout her treatment, but said privately funding a colonoscopy earlier in the timeline wasn't an option either.

"I was also a university student at the time. I was symptomatic and working two jobs.

"So to find thousands of dollars to go and do something privately was just not on the cusp."

And she felt ashamed - not wanting to ask family to chip in.

Shame is also something she said stopped young people from getting help.

"The best place to start is talking to someone about what's going on in the bathroom.

"That it can be something that feels so uncomfortable, and taboo to talk about, your toilet habits, but if you're noticing things are not normal for you it's best to talk to someone that you trust."

She said as a young person it could be hard to advocate for yourself, having another person on your team could help get what you need.

Huskinson said New Zealand was seeing more and more cases like Noyes.

"Bowel cancer that happens in your 20s, 30s, or 40s, is growing faster than New Zealand than any other country in the world."

It typically took around about 10 years between polyps developing and turning into cancer, so there was a window for catching and preventing the disease.

But when it came to why the increase, Huskinson wasn't sure.

"Researchers are not yet fully at the bottom of why that is.

"There are some generational changes that have happened in our diets.

"There are things like microplastics being used in our food and there's good research looking at what that does to the gut biome and what that does to the lining of the colon."

But there was no clear answer.

Huskinson said New Zealand would play a key part when researchers got to finding out why the disease was growing in younger people.