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.
Helen
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 already had the symptoms years and years ago without ever thinking about neuroendocrine cancer, as I’d never even heard of this disease. I went to the doctor – I’ve always been very careful about my visits – I had thyroid problems, which explained maybe flushing and perspiration – I also had kidney problems, which explained the pain in my side.
They did suspect a grumbling appendix but it grumbled for a long, long time, and about 20 years ago I had tests and they found that I had an irritable bowel syndrome and removed a few nodules and that I was told, was the end of that story. The treatment I was given was paracetamol. That was in my early fifties.
Life went on. I had bouts of perspiration and flushing, I was told I was nervous – as I am a nervous person – I was pre-menopause, menopause, post-menopause, the flushing continued.
About 5 years ago I started having to go to the loo maybe four or five times a day – I never thought about it really. Still going for my 6 monthly check-ups etc.
One day I had a very severe pain in my side, which lasted for two or three days. I was just under my ribcage. My GP said “I don’t like the sound of this, go and have an echography.
The radiologist said “you have several things wrong with you – I think you have a carcinoid tumour on your appendix, and I can see that there are several tumours on your liver – get into hospital as fast as you can”.
That was very scary, but I would say I’ve had the symptoms for around 20 years, and I’ve been treated for the last 3 years.
I’m very pleased with my treatment – I’ve been on it for 3 years. If you look on the Internet for ‘carcinoid cancer’ you might be very unlucky and hit on a prognosis of 3 years for your life – my tumours haven’t budged for 3 years, and I’m really happy with my treatment.
“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 
