My ‘pregnancy side effects’ were actually a sign of a dangerous cancer growing in ‘slow motion’ – here’s what I want you to know

An Australian mum has been told her irritable bowel-like symptoms are just a side effect of pregnancy – but it’s a sign of something much more sinister.

Jamie Kernaghan, from Adelaide, spent years trying to get to the bottom of her stomach problems before it was finally found to be a little-known and incurable cancer called a Neuro-Endocrine Tumor.

During both pregnancies with daughters Ellie, now 17, and Isabelle, now 14, and long after, the 45-year-old struggled with bouts of diarrhoea, hot flashes and fatigue.

In 2010, six months after giving birth to Isabella, she was finally diagnosed with the very slow-growing cancer and she feared the shock news would mean she wouldn’t see her girls grow up.

But almost 14 years later, Jamie lives a relatively normal and happy life and hopes to have many more years left with the disease she has learned to view as a ‘chronic illness’ rather than a terminal diagnosis.

Jamie Kernaghan (right) was diagnosed with a rare tumor after her symptoms were blamed on pregnancy side effects.  Pictured with daughters Ellie (17) (centre right) and Isabelle (14) (left) and husband Steve (centre left)

Jamie Kernaghan (right) was diagnosed with a rare tumor after her symptoms were traced to pregnancy side effects. Pictured with daughters Ellie (17) (centre right) and Isabelle (14) (left) and husband Steve (centre left)

Jamie was glum and waking up from her anesthesia after a colonoscopy when she got life-changing news.

‘I was told, “I’m sorry, it’s cancer”, and to be honest, I don’t know that I heard much more that day. I went into a phase where everything is mumbling around you,’ she said.

It was months of tests and scans to scrutinize the mother’s stomach problems that had plagued her for years.

The colonoscopy revealed a tumor on Jamie’s bowel and a biopsy was sent off for testing to determine how serious it was.

It was the Friday before a long weekend, so Jamie, then 32, braced herself for an anxious wait ahead.

“I was told you have a tumor in the intestine, but we can also see a mass on your liver,” and that’s when he said, “that’s not great, it means it’s spread, ” she remembers.

‘You hear all these things about liver cancer and how it’s not a good diagnosis. That’s what I was left with on Friday afternoon thinking, “Oh my god, my finish line has come”.’

Throughout both her pregnancies with her daughters and long after, the 45-year-old struggled with bouts of diarrhoea, hot flashes and fatigue

Throughout both her pregnancies with her daughters and long after, the 45-year-old struggled with bouts of diarrhoea, hot flashes and fatigue

But over the weekend, Jamie received a call from a doctor who told her she had a midgut neuroendocrine tumor (NET).

“It’s one of those diseases that is so different for so many people, but for me, mine is pretty common in terms of neuroendocrine tumors,” Jamie explained.

“It’s a cancer of the neuroendocrine cells, those cells secrete hormones for normal body functions, they can naturally go awry and that’s what happened to me.”

Many medical professionals think that NETs are rare, but it is the seventh most diagnosed cancer in the country with more than 25,000 Australians currently battling the disease.

The mother’s diagnosis came three years after her symptoms began when she and her husband Steve were living in LA and pregnant with Ellie. They continued long after Ellie was born.

‘I always had diarrhoea. I got blues and sometimes just felt really tired, but you put that down to a young kid,’ she said.

‘I did go for an initial test to try to get to the bottom of it probably six months after Ellie was born. Back then the doctors were like, “tcut out dairy, try cutting out gluten.”‘

Her symptoms continued after the family moved back to their hometown of Adelaide in 2008 and during her pregnancy with Isabelle a year later.

In 2010, six months after having Ellie, she was diagnosed with a midgut neuroendocrine tumor

In 2010, six months after having Ellie, she was diagnosed with a midgut neuroendocrine tumor

Jamie was able to lead a normal life between injections and regular check-ups until September 2022 when a tumor was found in her humerus bone near her shoulder.

Jamie was able to lead a normal life between injections and regular check-ups until September 2022 when a tumor was found in her humerus bone near her shoulder.

“My initial consultations with doctors about (in the US) got completely messed up because of an international move, and when we returned to Australia again I had periods where I would feel unwell,” she said.

‘I was pregnant with Isabelle and was told it was pregnancy related, but after Isabelle was born I realized these symptoms wouldn’t go away. I’m not pregnant anymore.’

Jamie went back to her childhood GP who insisted on tests to find out what was wrong, including the colonoscopy that finally established her diagnosis.

The good news about NETs is that they are very slow moving which gives Jamie and doctors time to work out the most effective treatment options.

‘The way the doctor described it was like cancer in slow motion. We have time to take a closer look and figure out the best next steps. It’s not as bad as if it were straight liver cancer, so that was reassuring, but still not unbelievable,’ she said.

Jamie describes the three weeks after her diagnosis as a ‘haze’ of more scans, appointments and tests.

‘We were lucky the children were so small. They had no idea what was going on. My parents and my husband, they really formed a bit of a team,’ said Jamie.

‘Everyone went in battle mode focus on protecting me and the children and trying to figure out all the next stages and appointments.’

It was decided that Jamie would need major abdominal surgery to remove about 30cm of her intestines, her appendix, gall bladder and as much of the cancer as possible.

Jamie had major abdominal surgery to remove about 30cm of her bowel, her appendix, gall bladder and as much of the cancer as possible

Jamie had major abdominal surgery to remove about 30cm of her bowel, her appendix, gall bladder and as much of the cancer as possible

“(Surgeons) really untangled the big tumors that gave me a little bit longer life,” she said.

‘My liver, I thought why couldn’t you take it all out? But they described the liver tumors to me like a poppy seed muffin with lots of little dots all over it.’

Although they weren’t able to remove all the small tumors, the procedure relieved many of Jamie’s stomach problems and meant she would have minimal treatments in the years that followed.

‘I was put on a drug called lanreotide which is a monthly injection that helps control the release of hormones from the tumors. It does not cure the disease, it only controls the symptoms,” she said.

‘That along with the surgery absolutely helped. It really felt like I got my life back in a funny way for quite a few years after that,’ she said.

Jamie was able to lead a normal life between injections and regular check-ups until September 2022 when a tumor was found in her humerus bone near her shoulder.

“It had been there for a while but it started to get quite big and was causing me a bit of pain,” she said.

Although they weren't able to get all the small tumors out, the procedure relieved many of Jamie's stomach problems and meant she would have minimal treatments in the years after

Although they weren’t able to get all the small tumors out, the procedure relieved many of Jamie’s stomach problems and meant she would have minimal treatments in the years after

“My team decided it was time to move on to a treatment called PRRT (Peptide receptor radionuclied therapy) which is a form of infused radiation.”

PRRT was an eight-month process for Jamie where she would have four rounds of radiation on the affected area every five weeks.

She finished that treatment in June last year and now all she can do is go for a scan every six months to see if the cancer has progressed as it has since her diagnosis.

“I had a very good team around me and they monitored it very well, but it was one of those diseases where as a patient you go, “Why can’t we do more? Why couldn’t I have had this therapy 10 years ago, and trying to get rid of it?” she said.

“But because it’s a slow-moving cancer, the treatments don’t work well, the radiation actually needs something to kill.”

Over the past decade, Jamie has found solace in going to NET support groups such as Neuroendocrine Cancer Australiawhere she met people who have had the disease for three decades, giving her hope that she is here for the long haul.

‘I realized it was going to be a long game for me. I think my mindset changed after this is a chronic disease rather than it’s going to kill me tomorrow,’ she said.

‘But also, I just didn’t think I’d be an old person, so I found myself wanting to do everything right away. I want to build a house, let’s do it. I want to go here, let’s do it. And probably feel I might have tried to rush things.’

Jamie encourages people with similar symptoms to advocate for themselves and push to find answers.

‘Looking back, I wish I had tested earlier because before it spread my story would probably have been very different. It wouldn’t have become a lifelong thing, but that’s the situation with most NET patients, they’re diagnosed too late,’ she said.

“Anyone who has any of these symptoms or if you’re told you have irritable bowel or you’re diary intolerant and you just don’t think that’s what it is, you just have to keep going, you’ve got to get your own become a lawyer if you know something is not right, you just have to keep pushing.’