Living with neuroendocrine tumours (NETs): Helen’s story
March 5, 2020
Patient stories I already had the symptoms years and years ago without ever thinking about neuroendocrine cancer, because I had never even heard of this disease, and I went to the doctor, I’ve have always been very careful about my visits. I had thyroid problems, which explained, maybe, the 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 six tests and they found that I had an irritable bowel syndrome, and removed a few nodules and that was, I was told, was the end of the story and the treatment that I was given was paracetamol, and that was in my early fifties, and life went on. I had bouts of heavy perspiration and flushing and I just thought, you know, I was told I was nervous, I am a nervous person, I was pre-menopause, menopause, post-menopause, the flushing continued, and about five years ago maybe, I started having to go to the loo maybe four or five times a day, and I thought “Ah.” Never thought about it really. Still going for my six monthly checkups etc. and one day, had a very severe pain in my side, and it lasted for two or three days, it was just under my ribcage, and my GP said “I don’t like the sound of this. Go and have an echography.” and 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.” So that was very scary, but I would say that I’ve had symptoms for 20 years and I’ve been treated for the last three years. I’m very pleased with my treatment. I’ve been on it for three years, so those three years, if you look up on the Internet for carcinoid cancer, you might be very unlucky and hit on the prognosis of three years for your life. My tumours haven’t budged for three years, and I am really happy with my treatment.