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1. What impact has NETs had on your life?
Obviously, any cancer diagnosis has a HUGE impact on your life, but I haven't let it define my life. After the initial diagnosis and the upheaval that followed, life continues. I work less and have had to give up alcohol. I have spent a small fortune on scans, pathology tests hospitalisations, biopsies and surgery.
I consider myself extremely lucky that I live in Australia and particularly Victoria where we have access to first class healthcare and The Peter Maccallum Cancer Centre.
2. What has been most helpful to you in your NET experience?
A letter to the editor of The Age newspaper by Dr. John Leyden led me to The Unicorn Foundation. I had just had my second tumour removed two years after my initial diagnosis. At my first patient support meeting I met another PNET patient who had had a Whipple, suddenly I wasn't the only one!
At the time I was being treated in the private hospital system and it was a relief to know that I was receiving the same excellent care and treatment as The Peter Mac patients who I met.
3. What advice would you to give to a newly diagnosed patient?
I guess I am preaching to the converted here, but don't assume as I did, that all oncologists are experts in all cancers. Even the lovliest oncologist can be clueless when it comes to knowledge about NETS. Don't be afraid to go doctor shopping, it took me three goes to find the right one.