An Australian mother was told her irritable bowel-like symptoms were just a side effect of pregnancy, but a sign of something much more sinister.
Jamie Kernaghan from Adelaide spent years trying to get to the bottom of her intestinal problems before it finally turned out to be a little-known and incurable cancer, a neuroendocrine tumor.
During both pregnancies with daughters Ellie, now 17, and Isabelle, now 14, and long afterward, the 45-year-old struggled with bouts of diarrhea, hot flashes and fatigue.
In 2010, six months after Isabella’s birth, she was finally diagnosed with the very slowly progressing cancer and feared the shocking news would mean she wouldn’t see her girls grow up.
But almost fourteen years later, Jamie is living a relatively normal and happy life and hopes to live many more years with the disease she has learned to see 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 with daughters Ellie, 17, (middle right) and Isabelle, 14 (left) and husband Steve (middle left)
Jamie was feeling down and waking from her post-colonoscopy anesthesia when she received life-changing news.
‘I was told, “I’m sorry, it’s cancer,” and to be honest, I don’t know if I heard much more that day. “I got to a stage where everything around you was mumbling,” she said.
It had been months of tests and scans to get to the bottom of the mother’s intestinal problems, which she had been suffering from for years.
The colonoscopy revealed a tumor in Jamie’s bowel and a biopsy was 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 that awaited her.
“I was told you have a tumor in your intestine, but we can also see a growth in your liver,” and then he said, “That’s not great, it means it has spread,” she recalled.
“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 and thought, “Oh my god, my finish line has come.”
During both pregnancies with her daughters and long afterward, the 45-year-old struggled with bouts of diarrhea, hot flashes and fatigue.
But this weekend, Jamie got 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 quite common in terms of neuroendocrine tumors,” Jamie explained.
‘It’s a cancer of the neuroendocrine cells, those cells secrete hormones for normal body functions. Obviously things can go wrong and that’s what happened to me.’
Many medical professionals consider NETs to be 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 suffered from diarrhea. “I started having hot flashes and just feeling really tired at times, but that’s down to having a young child,” she said.
‘I did some initial testing to get to the bottom of it, probably six months after Ellie was born. At the time, the doctors said, “tTry to cut out dairy, try to cut out gluten.”
Her symptoms persisted after the family returned 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
Jamie was able to live a normal life between injections and regular check-ups until September 2022, when a tumor was found in her humerus near her shoulder.
“My initial consultations with doctors (in the US) were completely messed up due to an international move, but when we got back to Australia I had periods of feeling unwell,” she said.
‘I was pregnant with Isabelle and was told it was pregnancy related, but after Isabelle was born I realized these symptoms don’t go away. I’m not pregnant anymore.’
Jamie went back to her childhood GP, who insisted on 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 it moves very slowly, giving Jamie and the 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 was straight liver cancer, so that was reassuring, but still not surprising,” she said.
Jamie describes the three weeks after her diagnosis as a ‘haze’ of more scans, appointments and tests.
‘We were lucky that the children were so small. They had no idea what was going on. My parents and my husband were truly a team,” Jamie said.
‘Everyone got into it Battle mode I focused on keeping me and the children safe and trying to figure out all the next stages and arrangements.”
It was decided that Jamie would need major abdominal surgery to remove about a foot of her intestines, her appendix, gallbladder and as much of the cancer as possible.
Jamie has had major abdominal surgery to remove about a foot of her intestines, her appendix, gallbladder and as much of the cancer as possible
“(Surgeons) really shrunk the large tumors, giving me a longer lifespan,” she said.
‘My liver, I thought: why can’t you take it all out? But they described the liver tumors to me as a poppy seed muffin with all these little spots.”
Although they were unable to get all the small tumors out, the procedure alleviated many of Jamie’s bowel problems and meant she would have minimal treatments in the years that followed.
‘I was given a drug called lanreotide This is a monthly injection that helps control the release of hormones from the tumors. It doesn’t cure the disease, it just controls the symptoms,” she said.
‘That, along with the surgery, definitely helped. “It really felt like I was getting my life back in a funny way a few years later,” she said.
Jamie was able to live a normal life between injections and regular check-ups until September 2022, when a tumor was found in her humerus near her shoulder.
“It had been there for a while, but it started to get quite big and hurt me a bit,” she said.
Although they were unable to get all the small tumors out, the procedure alleviated many of Jamie’s bowel problems and meant she would have minimal treatments in the years that followed.
“My team decided it was time to move on to a treatment called PRRT (Peptide Receptor Radionuclide Therapy), a form of infused radiation.”
PRRT was an eight-month process for Jamie, during which she received four rounds of radiation to the affected area every five weeks.
She completed that treatment in June last year and now all she can do is have a scan every six months to see if the cancer has progressed as it has since her diagnosis.
‘I’ve had a very good team around me and they’ve monitored it very closely, but it’s been one of those diseases where as a patient you say, ‘Why can’t we do more? this therapy 10 years ago, and to try to get rid of it?,” she said.
“But because it’s a slow-motion cancer, the treatments don’t work well. The radiation actually needs something to kill.”
Over the past decade, Jamie has found solace by attending NET support groups such as Neuroendocrine cancer Australiawhere she has met people who have had the disease for thirty years, giving her hope that she will be here for the long haul.
‘I realized it was going to be a long game for me. “I think my mindset has changed from this being a chronic disease instead of just saying it’s going to kill me tomorrow,” she said.
‘But I also just didn’t think I would grow old, so I found myself wanting to do everything straight away. I want to build a house, let’s do that. I want to go here, let’s do that. And I probably feel like I tried to rush things.”
Jamie encourages people with similar symptoms to advocate for themselves and push for answers.
‘Looking back, I wish I had done the tests earlier because before it spread, my story probably would have been very different. It wouldn’t have become a lifelong issue, but that’s the situation with most NET patients: they get diagnosed too late,” she said.
‘Anyone who has any of these symptoms or if you’re told you have irritable bowel or diary intolerance and you just don’t think that’s it, then you should just keep going, you’ If you know something isn’t right , you have to become your own lawyer. You just have to keep pushing.”