Mark Camilleri

1. 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. This was above and beyond all the stuff we did as a family such as rock and roll dances, weekends away at hot rod shows and things like girls dancing and swimming. Just quietly my life was awesome. In the first few months after being diagnosed I couldn’t even get out of bed and had huge pain in my liver. I couldn’t understand what I had done to make my body let me down so badly.

2. I like reading about the positive stuff as that makes me more positive too. I have (Right from day 1), been open minded enough to try alternative treatments as well as the hospital stuff that we all do, and believe this has helped the most. Speaking to naturopaths and even seeing a chiropractor each week too has done wonders with my whole balance of life, but I do run everything past the hospital chemist first. I don’t believe for 1 minute that herbal tea will cure me of this, but it sure does help my high and low moods even out to a very good constant. Just talking to people with NETs face to face is awesome too as there just seems to be this bond between us. It really is a family you didn’t want to be a part of, but now that you are, the most wonderful people just show up. The Unicorn Foundation NET nurse Kate was really the very first point of contact and that little bit of comforting advice initially made me feel there was someone there I could ask and would genuinely know what I meant (Even when I didn’t). Thanks for all the help you give all of us.

3. The only thing I do say is fully understand what “You” have in regards to NETs. 2 people with exactly the same thing are still totally different. Symptoms and treatment might seem to be the same but could be very different. I fell into the trap of Googling everything and becoming a fully Google certified NETs professional in the first few days. Then realised that I needed to concentrate on what worked for me. By all means seek advice, but tweak it to what is good for you. Don’t be scared to change things up, some work, some don’t, but don’t ever be afraid to question (Even a doctor) and try.

Patient Stories

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.

Melissa Davis

I was diagnosed in 2011 at the age of 24, I can honestly say cancer had never entered my mind and it never seemed like something that could happen to me.

Noreen McGowan

My diagnosis of Neuroendocrine Cancer came as a complete shock.  I had been experiencing what the doctors called non-specific symptoms

Rachel Kerney

I was diagnosed a long time ago with MEN1 which meant I was being monitored for a long time.

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