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.
Steve
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.
Before diagnosis I was very tired – this was the reason why I went to the doctor.
She made a blood test, and an ultrasound, and she saw there was something in my liver.
She told me to go to another doctor, he did an MRI and he saw something in the liver too. Then I got a biopsy, and the doctor say that it is neuroendocrine cancer.
But they didn’t find the primary tumour in my body.
So I hear the word cancer and I think I will die.
I meet a lot of doctors – I think six doctors. It was a long way, but I think not as long as other patients – it took about half a year to my final diagnosis.
“Now I’m very positive, I know about neuroendocrine tumours (NETs), I read a lot, I hear a lot and now it’s ok for me.”
I think my life is the same as before, the condition doesn’t affect my life – I can go to work part time, not full time, I have three children – I can manage.
“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 
