What do you know about neuroendocrine tumours (NETs)? These cancers are thought to be uncommon, but the number of people diagnosed is slowly increasing – around 5,400 Australians are diagnosed with NETs each year. This World NET Cancer Day, Heather shares her experience with NET cancer to raise awareness about the disease.
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. NETs form in these cells, which are found throughout the body but mainly in the gastro-intestinal tract, pancreas and lungs.
It was by complete accident that Heather was diagnosed with a NET in her pancreas. She had no symptoms and doctors were scanning Heather for a musculoskeletal problem when they accidentally stumbled upon a tumour in the tail of her pancreas.
“It took about eight months for various doctors, scans and tests to work out what it was and what to do about it. I was lucky that my GP was persistent and kept referring me to different kinds of specialists until it all fell into place,” Heather says.
NET Nurse at The Queen Elizabeth Hospital, Jessica Mercurio says that NETs can grow silently and symptoms can mimic more common diseases, so almost 50 per cent of people are initially misdiagnosed with other conditions such as irritable bowel syndrome, menopause or anxiety.
“60 per cent of NET patients are advanced by the time a correct diagnosis is made and many patients have secondary growths (metastases) at the time of diagnosis. This can create a lot of grief and emotional hardship for patients,” Jessica says.
“Patients with NETs are amazing! Due to the lack of awareness about NETs in the medical and general community, NETs patients are very knowledgeable about their own disease and are great advocates for themselves. They are a small community of people passionate about raising awareness and supporting each other.”
What followed next for Heather were several surgeries including a splenectomy, and removing her gall bladder, two-thirds of her pancreas and one-fifth of her stomach. That’s when she began Peptide Receptor Radionuclide Therapy (also known as LuTate).
People with NETs can experience symptoms like hot flushes, debilitating diarrhoea, shortness of breath, rapid heart rate, abdominal pain, nausea and low or high levels of blood sugar. Other symptoms can also include pain, intestinal disturbances, fatigue and weight loss. LuTate helps to stabilise the disease, lessen symptoms and improve quality of life for people with NET cancers.
“The night before my first LuTate treatment I was terrified of having radioactive material infused into my body. The worst time emotionally was the ‘unknown’ the night before,” Heather explains.
“Now that my treatments have ended the only legacy issues I have are my muscles turning to mush and my gums have also receded on one side. But it’s far better than the alternative, if I hadn’t eventually been placed into the right hands to treat my NETs. I had an excellent outcome from my treatments and now I’m getting on with life.”
It can often be difficult to know where to turn for information and support, especially when you are living with a less common type of cancer, like NETs.
If you’ve been recently diagnosed with a NET cancer or know someone who has, our experienced Cancer Council Nurses are here for you. Get in touch on 13 11 20 or visit www.cancersa.org.au/support/support-services/13-11-20-information-and-support-service