Katie, Australia

All stories

I was first diagnosed with Pancreatic Neuroendocrine Cancer 7 years ago when I was 36 yrs old. We were trying for baby #3, life was busy and I had suffered many miscarriages. I had been seeing "fertitlity experts" and despite numerous tests etc they didn't pick it up. By christmas 2010 I was at my wits end so went back to my GP who suggested an ultrasound of my gall bladder - she never expected to see tumours on my liver and later that day a CT showed a mass on my Pancreas.

I was lucky to get into to get straight in to see an amazing surgeon who was part of a Multi Disciplinary Team (MDT) of Drs. I was put under the care of a fantastic Endocrinoligist and Oncologist, and amazing cancer nurses and  within weeks the surgeon took the mass off my pancreas, my spleen too.

The last 7 years have consisted of monthly injections, scans, direct targetted treatment - Peptide receptor radionuclide therapy (PRRT), Liver surgery and gall bladder removed and now chemotherapy. As more tumours show up, different treatments are used to reduce them where they can but at the same time trying not to affect the kidneys with too much radiation. Unless caught in the very early stages before spreading, NETs are not really curable, but managed as a chronic condtion would be.

Keeping a regular job was too hard so I work casually when I feel I can. Not alot is known about Neuoendocrine Cancer (NETs). I was so grateful to find out about the Unicorn Foundation which is the only group focusing on this type of disease. I spend alot of my time voluntering as a Consumer Representative for then, I volunteer with Cancer Council NSW and do alot of phone support helping other patients with their journey. I am a consumer representaive working with researchers who try to get grants fosusing on cancer research.

My life is not how I planned or what I expected but I try to help create awreness and hope someone might read my story and ask their Dr to look harder to find out why they may be feeling generally unwell  and light headed, nauseous (which was my main symptom) , why they have flushing, diarrhea or abdominal pain (which are symptoms I didn't have but many do) - maybe it isn't Irritable Bowel Syndrome which they keep being told.

I hope my story helps people understand a little more, ask the question to their Dr or even mention it to a friend who is not feeling well.

Steve Jobs, The CEO of Apple died from NETs but chose to keep his story quiet as I guess he wanted to be known as the CEO of Apple and not the NETs patient. He could have done so much to help so amny patients all around the world but chose not to.....well I am choosing to do what I can, while I can, for as many people as I can....

Thank you for reading my story....xxx

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