This website is intended for an international audience, excluding the UK, United States, Canada and France
This website is intended for an international audience, excluding the UK, United States, Canada and France
Information about the emotional, physical and social challenges of living with NETs.
Robert
If you’re living with neuroendocrine tumours (NETs) and you’re looking for clinics in your region and patient support services, then you’ve come to the right place. Search through the Get Support resources listed here to see if any of these can help you.
Opinions expressed in the videos are purely individual, personal opinions of the patient, and by no means constitute treatment advice or guidance. Every patient should follow instructions from their treating physician as well as make their own informed choices.
I’m Steve Medhurst, I’m 48 years old. I live in Mitchell, Ontario.
I was diagnosed with stage IV Neuroendocrine cancer.
11 years ago, they found a mass in my abdomen area, but after 3 days, the pain went away and they discharged me. And every 6 months, I had a CT scan.
9 years later, I had stomach pain again. This mass had now basically doubled in size.
April 9th, 2020. A date I won’t forget. The oncologist told me, I had neuroendocrine cancer. And he pegged my life expectancy at 10 to 15 years. I was shocked and very confused.
I had never heard of this type of cancer. It’s extremely rare. I was… terrified.
I was lucky to find some groups to chat with. A Facebook group called CNETS Canada. It’s the most important thing I have found since being diagnosed. It’s a very important tool when you’re looking for answers.
Someone helped me, I enjoy helping others, too, so I look forward to helping out in that group and being a volunteer. I started a blog about a year ago about my struggle and my long, long battle with cancer.
My wife is probably more concerned about me than I am about me. She always listens to me and encourages me to keep finding new things to do, to find a joy in life. Also important are my two boys. My oldest son is Logan. He’s 21, he’s at college and doesn’t live at home anymore. My youngest boy, Gavin, is 19 and a sensitive young man. When he sees me looking off, he will always ask me if I’m OK. If Tracy doesn’t see it, Gavin will see that something’s up with Dad, and he’ll be like, “Dad, are you OK? You look kinda off today.”
“I don’t want to hide anything from them. I let them know what’s going on. They’re both great kids.”
I’m a water fanatic. I love canoeing. Canoeing is my favorite thing in the whole wide world. It brings me peace. I feel that it’s where I heal the most. It’s where I feel best, it’s where I’m happiest. As I feel healthy now, my wife and I have plans: part-time living in a van and traveling. Traveling a bit of Canada.
For almost a year, I’ve held a stable medical status. A friend of mine said: “We’re not dying from cancer, we’re living with cancer.”
“When I went for my second opinion things changed. I was told that there was a mass found in or around my pancreas, they weren't quite sure what it was.”
"A friend of mine said: We're not dying of cancer, we're living with cancer"
“My diagnosis was through complete chance and was triggered when I told a nurse I’d lost weight.”
“It reassures me to know what’s facing me, and what I should do. I feel like I am part of a team and they are all going to look after me.”
“The result of that is that they discovered that I had a tumour in my big bowel and that it had metastasised to my liver, all without me knowing.”
“It was very hard for me to speak to my children, to say, ‘I have cancer’, because I didn’t know a lot about neuroendocrine cancer.”
Information about the emotional, physical and social challenges of living with NETs.
Patient support groups for NETs can often provide social and emotional support.
Learn about the different types of NETs, symptoms of NETs, their diagnosis and treatment.
Living with NETs - your resource for neuroendocrine tumours information and support 
