Sam thought her ‘funny tummy’ was caused by gluten or even IBS. Then she discovered the true culprit… a little-known cancer that’s on the rise – and it’s NOT colon cancer

The series of videos posted to her 77,000 TikTok followers portray a young, vivacious woman in the prime of life.

The clips, some of which have been viewed hundreds of thousands of times, feature teacher-turned-influencer Sam Jackson modelling new outfits, reveling in European sunshine and offering advice to fellow teachers preparing lessons for an army of precocious pre-teens.

But buried among the typical influencer content is a handful of videos that reveal the hidden hell the 32-year-old has experienced this year.

One posted in early July that’s so far raked in more than 800,000 views sees UK-born Sam solemnly tell her followers ‘the news no one wanted’: She has stage four colon cancer.  

At least, she thought, it was a disease she was familiar with, and could predict a treatment plan. Information that she found online told her people live for several years with advanced disease. 

She knew the condition was rising in people of her generation. 

Only, within weeks, her world was upended once again, as an internal scan revealed an even more sinister reality. 

The cancer was, in fact, in her appendix – the small, tube-like organ attached to the large intestine, which houses a portion of our gut bacteria. 

While it developed there, it’s now approaching her stomach lining.

Experts say the disease, known medically as appendiceal cancer, is often tougher to treat than colon, or bowel, cancer, and far more likely to spread after treatment.

And, curiously, it is also on the rise – particularly among young, fit and healthy people.

The cancer is overall very rare, with fewer than 1,000 cases diagnosed in the US every year — equivalent to one to three per million people.

The cancer is most common among those aged 50 to 55 years old, but rates have risen exponentially in the past couple of years — particularly among younger adults. 

Studies show the disease is starting to become more common in this age group, with rates rising approximately 200 percent among Americans under 50 over the last two decades.

Experts say that appendix cancer is uniquely ‘sneaky’ as, very often, there are virtually no symptoms. There is also no simple, effective test that looks for it.

‘While bowel cancer can cause no symptoms, there are often small traces of blood in the stool, and we can spot this via a simple test,’ said Professor Justin Stebbing, oncologist and visiting professor of cancer medicine at Imperial College London.

‘We don’t have that with appendix cancer. And either there’s no symptoms, or it’s a list of very non-specific digestive complaints that can easily be dismissed for mild period pain, IBS or endometriosis.’

He added: ‘Treatment tends to be less successful, compared to bowel cancer.’ 

For the past year, Sam had ‘on and off tummy problems’, including bloating and cramps. Sometimes she’d need to go to the toilet more urgently than normal. 

‘I assumed it was food-related because it always seemed to happen when I’d eaten dairy or gluten,’ she said. ‘When I cut them out for a bit, it really helped.’ 

But she struggled to stick to the restricted eating pattern as it resulted in weight loss and exhaustion.

In March, she visited her doctor who advised her to keep a food diary to track common triggers. The symptoms came and went, having little impact on her day-to-day life.

But on Saturday, July 18, she was hit by an almighty ache in her belly, which felt a little like ‘a strong period pain that wouldn’t go away’.

The sensation was still there on the Monday morning, so she made a plan to ‘dip out of work’ that day to visit her physician. 

‘She had a feel of my stomach and said that, because of the severity of the pain I’d been in, it could be appendicitis, so she told me to go to my local [emergency department].’

Hospital doctors conducted blood tests, CT scans and an ultrasound, and provided an infusion of painkillers. 

At 7pm, after several hours of waiting, nurses brought her into a side room with a sofa and low lighting, and gestured for her to sit beside the doctor.

‘I thought, “This doesn’t seem good”,’ Sam said. ‘The room they took me to was like one I’ve seen in a TV show, where they take people to give them bad news.’

Her hunch was right. The scans had detected several suspicious growths in her ovaries and within her digestive system. The signs pointed towards cancer that had spread. 

Further tests would need to be conducted to establish the location of the original tumour, but it was likely to be either ovarian or bowel cancer, doctors told her.

‘You never think it’s going to happen to you,’ said Sam, who lives alone. ‘I was, obviously, shocked and upset, but I think I still had this feeling they’d got it wrong and made a terrible mistake, because it all happened so quickly.’

A follow-up colonoscopy – whereby a camera is inserted into the back passage to look for bowel tumours – along with a biopsy and yet more scans were conducted over the following week.

The results were confusing. Her bowel and ovaries were clear of cancer but doctors had found diseased cells in her stomach lining. 

‘The wait for answers was excruciating,’ she said. ‘Although there was still a glimmer of hope, at this point I’d accepted that it was probably stage four cancer.’

Two days later the hospital phoned and asked her to come in to see the specialist with her parents, who had traveled down from where they lived in Bolton – a town in Greater Manchester in northwestern England – to London, where Sam now lives. 

Another family room, another stern-looking chaperone.

The doctors had finally got to the root of the problem; a tumour in her appendix which had spread upwards to the lining of her stomach. 

She’d need major surgery and chemotherapy, although doctors weren’t yet sure which would come first.

‘My mom and dad started crying, I started crying – it was horrible,’ she said. ‘The doctor said that, although more tests were needed to confirm, the cancer was probably stage four.’

There are two types of appendiceal cancer: epithelial appendiceal cancer and neuroendocrine appendiceal cancer.

Epithelial appendiceal cancer grows from cells that make up the lining of the appendix. This leads to a buildup of mucin, a jelly-like substance that protects the lining of the stomach, intestines, and appendix.

When mucin accumulates too much, it leads to the appendix rupturing.

Neuroendocrine appendiceal cancer — the most common form of the disease — grows from enterochromaffin cells, which are involved in digestion and movement in the intestines.

Studies show that between 67 and 97 percent of patients diagnosed with neuroendocrine tumors — the most common form — live more than five years after their diagnosis.

But for patients whose cancer is spotted in later stages, and when it has spread to other areas of the body, the rate is lower.

Experts say that the rarity of the cancer makes it difficult to calculate the five-year survival rate.

At the time of writing, Sam is awaiting confirmation from the hospital about when she’ll begin her treatment plan.

Scientists remain perplexed about the rise in young people getting appendix cancer, which is still rare, affecting just a few hundred people a year. 

It’s likely that the same factors at play in the rising tide of bowel cancer are to blame. 

‘I suspect it’s a mixture of factors like ultra-processed foods in our diet, antibiotic use, perhaps changes to the gut microbiome,’ Professor Stebbing explained.

‘It could be related to events that happen in childhood because these cancers tend to take a very long time to develop.’

While the appendix is often thought of as a ‘redundant’ organ, it plays a role in digestion, and is therefore affected by the food we eat. 

‘Food passes through it and can get trapped in it,’ Professor Stebbing says. ‘It’s exposed to the contents of our gut, just like the bowel is.’

Sam, in the meantime, is ‘carrying on as normal’ – as the upbeat clips on her social media can attest to.

She began documenting snippets of her medical journey in July, and found the supportive feedback from followers was often the only thing that kept her going.

‘I’ve had thousands of messages and gained around 30,000 followers – and I really didn’t expect that type of support. I’ve been in touch with other girls going through the same cancer as me, and it’s made me feel like I’m not alone.’

But mostly, she’s sharing clips of her sunny coffee walks and evenings out at friends’ weddings. She’s preparing to go back to work this week. 

‘I’m going out for dinners, I’m seeing my friends, I even went to a festival the other day,’ she said. ‘I’m trying to be as normal as I can for as long as I can because, well, I don’t really know any other way to be.

‘People say I’m brave, but what choice do I have? The other option is to admit defeat and stay in bed every day. I can’t do that to myself, so I’ll just keep going, day by day.’