Please join us in welcoming our newest Ambassador, Simon to the team 🦋💬 I was diagnosed in October 2018 (aged 35) with two Pancreatic Neuroendocrine tumours (one in head and one in tail, both less than 1cm) Stage 1, Grade 1 and Ki67 <2%. This, however, is not the start of my journey.In July 2012 I was diagnosed with Multiple Endocrine Neoplasia Type 1 (MEN Type 1) through a genetic test at The Queen Elizabeth Hospital, Birmingham. This is a hereditary condition associated with tumours of the endocrine (hormone producing) glands. The most common tumours seen in MEN Type 1 involve the parathyroid gland, the pancreas, and pituitary gland, commonly referred to as the 3P’s.
I was now under an Endocrinologist at the QE Birmingham and would be for the rest of my life, with annual blood tests, CT’s and MRI’s. For the first few years my health was fine. Then in 2016, I started to suffer from extreme acid reflux, so I moved on to a PPI.
The first PPI did not agree with me, so I moved onto a second. At first this worked, however the acid reflux and serve heart burn and vomiting returned. This was so severe that I underwent an endoscopy and was diagnosed as having a severe oesophageal ulceration. My PPI was then increased from one a day to two a day.
At the same time my annual blood tests had shown that my calcium levels had been increasing. Therefore, I was off to see another medical team. This resulted in nuclear medicine scans on my parathyroids. Two of which were glowing so in November 2017 these were removed, and I spent three days in the QE Birmingham.
During 2018 I suffered from extreme sickness and diarrhoea. This resulted in extreme dehydration. I was taken to hospital five times in seven months by ambulance, where I was rehydrated and sent on my way. As you know, this is not normal and the story moves towards NETs. So, it just so happened that as a spin off, of MEN Type 1 you are at higher risk of developing NETs (which I didn’t know).
I was in regular communication with my endo at the QE, at this time, saying “this can’t be normal”, which he agreed it wasn’t. He sent me for MR’s / CT’s and something was seen on my pancreas.
So, another EUS with ultrasound was ordered (by this point I was pretty anxious and had to be sedated). Then in October 2018, I received a letter informing me I have two pNET’s at either end of my pancreas.
In December 2018, I returned to the QE Birmingham to see the NET team for the first time (of which my endo is part of) after the MDT meeting. I started on 60mg Lanreotide every 28 days supported by Creon with every meal (don’t forget still on the PPI). I did the second injection at the QE under the supervision of the NET nurses. I did the third one at home in February 2019 and have been doing them at home ever since.
Since December 2018 I am a ‘watch and wait’ or as I like to describe it a ‘ticking time bomb’. I’m fully expecting a total pancreatectomy when either one or both of the tumours reaches 2cm.
I feel lucky, that up until this moment in time I haven’t had too many procedures.
I’m 38, husband to Amy, father to three girls Lily (10), Penny (7) and Evie (4). I was a Senior Vice Principal in secondary education but retired on medical grounds and deemed to ill to be able to gain meaningful employment again, in other words, I’m retired. I’m a stay-at-home dad.