In partnership with Ipsen, NeuroEndocrine Cancer Australia (NECA) presents the ‘Community Compass Campaign’, a disease awareness initiative empowering patients with neuroendocrine tumours (NETs) to navigate how they live with their condition through the shared experience of other people living with NETs.
Jacqueline, 62 years old and diagnosed with a NET.
For Jacqueline and her partner Meg, her diagnosis came as a surprise and led to some life-changing decisions about her work-life balance.
“I was diagnosed with neuroendocrine cancer, which was a big shock to our world… and I did keep working for some time. But, I came to the conclusion that the stress of the job… wasn’t good for my overall well-being… And so the challenge is to find other things to keep you stimulated.”
Like others living with NETs, her symptoms of heart palpitations, breathlessness, and tiredness could easily have been dismissed for other causes such as a heart condition, asthma, or menopause.
“There was never any kind of thing found, there was no conclusion to those episodes. . . so when I think about symptoms to diagnosis, it was probably about 7 years.”
A doctor ordered a scan to examine her bloated abdomen, discovering the tumour. An important thing for Jacqueline and Meg was educating themselves about it and trying to understand what it was all about.
Meg reflects on the stress around the time of diagnosis.
“It had been highlighted that something wasn’t quite right… It was quite overwhelming. What Jacq did really well was to educate herself, and get a sense of the prognosis and what the treatments could be. Through that process, we could have open conversations.”
Finding NECA provided Jacqueline and Meg with the support they needed.
“My oncologist put me onto NECA, which is an amazing support organisation that helps patients understand the cancer… and navigate the medical system. It’s really getting yourself educated so you can manage yourself and others.”
Do you, or does someone you know have these symptoms?
The skin on your face and upper chest feels hot and changes colour
Asthma-like signs and symptoms, such as wheezing and shortness of breath
A racing heartbeat (palpitations), sometimes combined with dizziness
Your bowel motions are regularly urgent, watery, and frequent with no known cause
Overwhelming exhaustion that cannot be overcome with a good night's rest
A red rash with swelling and blisters that often travels from place to place on the skin