I have had problems with gut health for a number of years. New Year 1995 I was in so much pain and couldn’t even swallow a mouthful of peppermint water to try to ease my symptoms. I got an ultrasound for stomach ulcers but the problem was a blocked gall bladder. It was full of perfect cube stones. Within 3 weeks it had been removed and for a while I felt quite well.
Later in 1996 I started with acid reflux which got to the point I didn’t want to eat. My first ever endoscopy resulted in a diagnosis of Barrett’s disease caused by the lining of the oesophagus being burnt away by too much acid. The follow up treatment was tablets to control the acid and surveillance by endoscopy every 3 years. I wasn’t keen on having the endoscopies, but I was advised it was necessary as there was a risk of cancer developing.
In December 2015 I had my usual check, but I had not been feeling great, no energy, reduced appetite and I had lost weight. I really needed to lose a few kilos so I didn’t really worry too much about that. My abdomen was constantly distended and I realised I was burping a lot, something I never did much before.
A quick chat after the procedure with the specialist, I was told he had found multiple polyps, a few nodules and signs of a gastric infection. The nodules, bigger polyps and stomach lining were biopsied and I was asked to book a follow up direct with the specialist’s secretary for 2 weeks. Normal procedure was they would send me an appointment for about 4 weeks, but I didn’t really worry as it was getting near Christmas.
I attended my appointment on my own as I normally did, but the specialist sat me down and straight away said I wasn’t expecting that. I realised then that he was reading the pathology report from my biopsies. He said I’m sorry, but you have two tumours in your stomach and two in the small intestine(duodenum). Not really sure what this meant at the time I asked what type of tumours and he said I think they are cancerous.
He arranged for a CT and PET scan to identify what they were a week later. I also needed another endoscopy for removing over 50 polyps from my stomach and because there were so many there, they needed to check my colon too, so an endoscopy and colonoscopy were ordered for the start of 2016 to be done the same day.
I then needed an Endoscopic Ultrasound (EUS) to see if the tumours could be retrieved by endoscopy. These tests with the EUS showed 3 tumours as different stages of stage 1 and the other at stage 2, however, the EUS also recorded a pNET in the tail of my pancreas. I made an urgent appointment with the surgeon and I was booked for a distal pancreatectomy and splenectomy as they would not be able to save the spleen.
I had to pass a through medical to see if I was fit enough for a big operation and fortunately I was. 11 July 2016 I was admitted to hospital and the operation completed in 8 hours. My recovery was good but I was not allowed to eat anything for a few days and then had a soft diet introduced.
I was in ICU for 7 days and 2 days in a general ward before being sent home to recuperate. I was off work for 3 months and allowed to return to work back part time as I was office based. I did really well for a couple of years but then the symptoms started again.
At my surveillance endoscopy in 2019, another NET was found in my duodenum. Interestingly, the PET scan following did not show this one and when the doctor told me I was clear, I had to say “that can’t be because the endoscopy 5 weeks earlier had showed a new NET”.
It took a couple of days of discussion to confirm yes there was a new NET, a further surgery was scheduled to resect a piece of my small intestine. This was June 2019, so almost 3 years after the first surgery.
Happily to date, all the checks since then have been negative. I was so lucky mine were all picked up early and were small and all resected by surgery very soon after diagnosis. I very much appreciate I am extremely lucky and although I was informed, at that time there was not enough material to explain all the detail of how, why or when the emotions, depression and uncertainties could be explained in plain terms.
To date I still do not understand the 5 and 10 year survival rate that you are told about. As far as I was informed, the surgical removal of my NETs was as near as you could get to say you are cured.