An Australian mother was told her irritable bowel-like symptoms were just a side effect of pregnancy – but were a sign of something much more sinister.
Jamie Kernaghan, from Adelaide, spent years trying to get to the bottom of her bowel problems before it was finally discovered it was a little-known and incurable cancer called neuroendocrine tumour.
During both pregnancies with her daughters Ellie, now 17, and Isabelle, now 14, and long after, the 45-year-old battled bouts of diarrhea, hot flashes and fatigue.
In 2010, six months after giving birth to Isabella, she finally received a diagnosis of very slowly progressing cancer and feared the shocking news would mean she would not see her daughters grow up.
But almost 14 years later, Jamie is living a relatively normal and happy life and hopes to have many more years left with the illness 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 attributed to pregnancy side effects. Pictured is her with her daughters Ellie, 17 (center right) and Isabelle, 14 (left) and her husband Steve (center left).
Jamie was sad and waking up from anesthesia after a colonoscopy when she was given life-changing news.
“They told me, ‘I’m sorry, it’s cancer,’ and to be honest, I don’t know, I heard a lot more that day. I went into a phase where everything is just buzz around you,” he said.
It took months of tests and scans to get to the bottom of the mother’s intestinal problems that had been plaguing her for years.
The colonoscopy revealed a tumor in Jamie’s intestine and a biopsy would be sent for testing to determine how serious it was.
It was the Friday before a long weekend, so Jamie, then 32, prepared for the anxious wait ahead.
“They told me you have a tumor in your intestine but we can also see a mass in your liver,” and that’s when he said, “that’s not very good, it means it’s spread,” he recalled.
‘You hear all that about liver cancer and that it is not a good diagnosis. That’s what he left me thinking on Friday afternoon: “My God, my goal has arrived.”‘
During her two pregnancies with her daughters and long after, the 45-year-old battled bouts of diarrhea, hot flashes and fatigue.
However, over the weekend, Jamie received a call from a doctor who told him he 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 bodily functions, obviously they can go wrong and that’s what happened to me.”
Many medical professionals think that NETs are rare; However, 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 Los Angeles and pregnant with Ellie. They continued long after Ellie was born.
“I always had diarrhea attacks. I had hot flashes and felt very tired at times, but that’s attributed to having a small child,” she said.
“I had some initial tests done to try to get to the bottom of it, probably six months after Ellie was born. At that point the doctors were saying, ‘t“Try to eliminate dairy, try to eliminate gluten.”
Her symptoms persisted 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 neuroendocrine tumor in her midgut.
Jamie was able to live a normal life between injections and regular check-ups until September 2022, when a tumor was found on his humerus near his shoulder.
“My initial doctor appointments (in the United States) were ruined due to an international move and then when we returned to Australia I had periods of feeling unwell,” she said.
‘I was pregnant with Isabelle and I was told it was pregnancy related, but after Isabelle was born I realized that these symptoms don’t go away. I’m not pregnant anymore.’
Jamie returned to see her childhood GP, who pushed for tests to get to the bottom of what was wrong, including the colonoscopy that ultimately determined her diagnosis.
The good news about NETs is that they progress very slowly, giving Jamie and her doctors time to determine 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 determine the best next steps. It’s not as terrible as if he were straight. liver cancer, so it was reassuring, but still not surprising,” he 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 young. They had no idea what was happening. My parents and my husband really were kind of a team,” Jamie said.
‘Everyone came in battle mode focusing on protecting myself and the children and trying to determine all next stages and appointments.’
It was decided that Jamie would need major abdominal surgery to remove about 30cm of his intestine, his appendix, his gallbladder and as much of the cancer as possible.
Jamie underwent major abdominal surgery to remove about 30cm of his intestine, his appendix, his gallbladder and as much of the cancer as possible.
“(The surgeons) really reduced the volume of the large tumors, which has given me more longevity,” he said.
‘My liver, I thought, why couldn’t you get it all out? But they described the liver tumors to me as looking like a poppy seed bun with lots of little spots all over it.’
While they couldn’t remove all the small tumors, the procedure relieved many of Jamie’s bowel problems and meant he would have minimal treatments in the years to come.
“I was prescribed a medication called lanreotide which is a monthly injection that helps control the release of hormones from tumors. “It does not cure the disease, it only controls the symptoms,” he stated.
‘That, along with the surgery, absolutely helped. I really felt like I got my life back in a fun way for quite a few years after that,” she said.
Jamie was able to live a normal life between injections and regular check-ups until September 2022, when a tumor was found on his humerus near his shoulder.
“It had been there for a while, but it started to grow quite a bit and was causing me some pain,” he said.
While they couldn’t remove all the small tumors, the procedure relieved many of Jamie’s bowel problems and meant he would have minimal treatments in the years to come.
“My team decided it was time to move on to a treatment called PRRT (peptide receptor radionuclide therapy), which is a form of infused radiation.”
PRRT was an eight-month process for Jamie, with four rounds of radiation to the affected area every five weeks.
He finished that treatment in June last year and now all he can do is have a scan every six months to see if the cancer has progressed as it has since his diagnosis.
“I’ve had a very good team around me and they’ve monitored it very well, but it’s been one of those diseases where, as a patient, you say, ‘Why can’t we do more?’ “Why couldn’t we have had this therapy 10 years ago, and try to get rid of it?” he said.
“But because it’s cancer in slow motion, the treatments don’t work well and the radiation really needs something to kill.”
Over the past decade, Jamie has found solace in attending NET support groups, such as Neuroendocrine cancer Australiawhere he met people who have had the disease for three decades, which gave him hope that he would be here for a long time.
“I realized it was going to be a long game for me. I think my mindset changed: This is a chronic illness instead of it’s going to kill me tomorrow,” he said.
‘But also, I didn’t think I’d end up being an older person, so I found myself wanting to do everything straight away. I want to build a house, let’s do it. I want to go here, let’s do it. And I probably feel like I’ve tried to rush things.
Jamie encourages people with similar symptoms to advocate for themselves and work toward answers.
‘Looking back, I wish I had done the tests earlier because before they were out my story would probably be very different. “It wouldn’t have lasted a lifetime, but that’s the situation for most NET patients: they are diagnosed too late,” she said.
“Anyone who has any of these symptoms or if you’re told you have irritable bowel or are intolerant to diaries and you just don’t believe it’s that, you have to move on.” “You have to become your own advocate if you know something is not right, you just have to keep pushing.”