Jamie's doctor put her symptoms down to first time pregnancy. The reality was much worse.

For many women who are pregnant for the first time, it's not uncommon to notice unusual bodily changes.

Adelaide mother Jamie experienced an uneasy stomach, gut issues and diarrhoea whilst carrying her two children. But there was something far more sinister bubbling under the surface of these seemingly common symptoms. 

"I just put so much of the symptoms down to pregnancy, post-birth and tiredness. Your body changes when you've had a newborn, I just figured my body was readjusting," she tells Mamamia. "A lot of doctors figured the same."

Watch: Patients share their stories. Post continues below.

At the time, Jamie had been living in Los Angeles and going back and forth to doctors, feeling concerned about her gastrointestinal issues. Desperate for answers, she eventually visited her childhood GP back home in Adelaide in 2010.

"The symptoms kept persisting even after I had given birth to my second child. We figured it was an irritable bowel, so I went through the whole 'Let's cut out dairy', 'Now let's try gluten-free'. But the gut issues and the dry hot flashes were still there," says Jamie.


"As it went on, I started to get worried. I just felt something wasn't right. Luckily, my childhood GP agreed this had been going on for too long now, so we did test after test for months. Eventually, something came back."

Jamie still vividly remembers this moment. She had just undergone a colonoscopy and the results revealed she had neuroendocrine cancer. 

"I woke up from the colonoscopy and was basically told straightaway that it was cancer. And they had to do a biopsy. I was diagnosed with a mid-gut, neuroendocrine tumour. It rocked me, I was 31 at the time, and it was six months after my second child was born."

Prior to her diagnosis, Jamie had never heard of this sort of cancer. She's not alone. 

Despite many of us knowing little about neuroendocrine cancer, it's the seventh most diagnosed cancer in Australia. 25,570 Aussies are currently living with it.

The neuroendocrine system is a network of glands and nerve cells that make hormones and release them into the bloodstream. These hormones help control normal body functions, such as digesting food. These neuroendocrine cells are found throughout the body, but mainly in the gastrointestinal tract (including large bowel and small bowel), pancreas and lungs.

Jamie post-surgery in 2010. Image: Supplied.


"Neuroendocrine cancers (NETs) are a very complex group of cancers which can happen anywhere in the body," explains Meredith Cummins. a dedicated cancer nursing professional and CEO of NeuroEndocrine Cancer Australia.

"The symptoms are so vague such as diarrhoea, abdominal pain, bloating, heart palpitations, flushing, wheezing and fatigue. It can be so hard for GPs and other healthcare professionals to correctly diagnose, resulting in misdiagnosis," she explains.

Oftentimes the misdiagnosis can be irritable bowel syndrome, menopause and even asthma. 

"With this in mind GPs should be aware of the symptoms of NETs and put the pieces of the puzzle together," says Cummins, also noting there are educational resources available from NeuroEndocrine Cancer Australia.


When Jamie was diagnosed 14 years ago, it was understandably devastating. 

She felt somewhat fortunate though as her doctor explained to her that her form of cancer doesn't move super quick, so they had time to figure out a solid treatment plan. At the time, surgery was her major form of treatment. 

"Not for all neuroendocrine patients but for many, like myself, doctors treat it like a chronic disease rather than a death sentence. I've never heard the word 'remission' and I never will, that just isn't possible with this sort of cancer really. The only word I hear is that it's 'stable'. It can be kept at bay and managed for a long period of time," says Jamie.

"They sort of explained to me that it's like a poppy seed muffin - you've have all these little spots all through and you can't just sort of pick each little bit out. It's small enough that treatment can keep the symptoms controlled but it doesn't kill the disease."

Ultimately, the cancer can become active at any time. It's a fear Jamie, now 45, lives with. 

"I worry I'll never get to see my kids grow up, and sometimes I struggle to imagine myself as an old person," she tells Mamamia.

"But I do feel very lucky all things considered because it has been a long journey for me, I have lived a pretty normal life. Only now am I getting to the stage where my symptoms are starting to spike again so things might change. I just know I have to be super on top of it."


Jamie and her family today. Image: Supplied.

Jamie's daughters were just three, and six months old when their mum was diagnosed with cancer.

Now 17 and 14, Jamie says her daughters "haven't really known me without having cancer".

"Since they were so young we didn't have to bring them on that journey until they were probably seven or eight, and we opened up the conversation. We didn't want to make it scary, rather just giving reasons why I have a nurse come and give me my injections and I go off for scans regularly," she says.


"You want to be there for them growing up. So for as long as I'm here, I will do exactly that."

In terms of a prognosis, Jamie doesn't know about specific timelines and it's something she chooses not to focus on, acknowledging it's a "coping mechanism".

"Don't get me wrong, I have my bad moments and scary moments. Right now I'm waiting for results from a recent scan, and that's always daunting. But I have to think straightforwardly and treat it from a 'chronic illness' perspective. We just manage it as best we can."

For people who hear Jamie's story, she firstly wants them to know the realities and symptoms of neuroendocrine cancer, saying it's imperative for people to always "advocate for themselves" in medical settings.

And for those who perhaps have the disease themselves, or know someone who has it, she hopes they know this.

"We need to get people talking about it. I don't want those who are diagnosed with it to see this as an automatic death sentence. You can have a really long life and manage neuroendocrine cancer. And it's about having the right team and support around you - you're not alone." 

Feature Image: Supplied.