Jan Tinkler

It’s almost two years now since I was given the diagnosis of Neuroendocrine cancer and yes it has changed my life dramatically. John and I were about to downsize and enjoy our retirement in a new area and despite the constant rounds of Doctors, scans, hospitals, blood tests and treatments we are doing just that!!

I was very shocked that this rare complicated incurable, inoperable cancer had been slowly growing for years and had metastasises in my bones with an unknown primary never having been detected despite years of IBS and other bowel problems!!

A year later I was coping well with the regular Lanreotide injections, pain and discomfort, I didn’t have the carcinoid syndrome and tumours in my spine were stable so this was all good news.
Then suddenly things changed as they can with NETs. New tumours found were more avid, so the grading changed another treatment was introduced and blood platelets started going on a roller coaster ride just to make things interesting!!

I am so thankful for the help and support on this journey not only with my wonderful family also with the amazing Health Professionals, Multidisciplinary teams, the Unicorn Foundation and the information and web cam programmes so readily available. The regular support group for patients and Carers with informative speakers and forums not to mention the camaraderie and social interaction with people who can empathise with you. I also find our faith a positive outlook and a sense of humour helps John and I to take the rough with the smooth.

If you are a new NETs patient I say welcome to the band of Unicorns, you are not travelling this journey alone there is help and support. My advice is to ask questions about anything and everything and write things down. It’s also good to have a support person with you on oncologist and treatment visits.

There may be days when you just want to let off steam, stamp and cry at the unfairness of it all, just try to hold on to the good days be kind to yourself and keep the “glass half full”. There is always a light at the end of a tunnel.

Patient Stories

Kristen Leknius

After almost 5 years of misdiagnoses, Kristen was diagnosed with NETs at only 43 years of age. Kristen’s initial diagnosis was grim, thankfully a second opinion and access to PRRT treatment successfully reduced her tumour and gave Kristen a second chance at life.

Demi Gough

On the 8th of October 2019 I found out I was expecting my second child. Less than two weeks later I was rushed in for emergency surgery for appendicitis. Two weeks after the surgery I was diagnosed with a NET inside my removed appendix

Michael Doyle

The more I read and understood about PRRT I just kept thinking why aren’t I receiving this treatment? I have inoperable and incurable NETs so I wanted something to give me hope.

Mark Camilleri

When I got diagnosed with NETs it literally flipped my world upside down. I went from doing volunteer work, playing football, working 6 days a week and playing on my cars.