Insulinoma Support Network

Our stories

Our stories

Read the experiences of people living with insulinomas. We are always welcoming new stories, contact us to share yours.


Paula's Story


Paula, from Bristol, UK, was diagnosed with a malignant insulinoma in August 2008.

In February 2008, my housemate found me running between my home and my neighbour’s house seeming vague and saying I had to find the binoculars. I was in fact cat sitting for my neighbour. This was followed by an incident of answering the door and just laughing at the poor man stood there trying to engage me in changing my power supplier. Following this, I flaked out and went to sleep for a few hours.

Another incident that month, which all occurred in the evenings following a strenuous walk home from work, was I was reading my e-mails and ended up “getting lost in my computer”. It was like being in the middle of a computer game, but only for real. The other strong memory, I have, is trying to send text messages from my mobile, which I do a lot, and realising at that point, I did seem able to work my phone. Most of these episodes ended with a tingly mouth and eating to bring myself back to normal. On reflection, I can now see incidents that occurred during 2007 that perhaps were indicating the onset of this illness.

These episodes put together made me make an appointment with my GP during March, I had blood tests for many things but all came back negative, the nurse thought I might be diabetic at one point, as I appeared to have low blood sugar after a fasting blood test. The one area I was aware needed attention was my diet, which was not always good, I was also aware I had been putting on weight for no real reason over the last six months or so. As everything came back normal, I was referred to a neurologist.

In April 2008, I never got to that appointment. At the end of April, I was shopping in Broadmead in Bristol and I remember feeling hungry, as I had skipped lunch, so went to get a sandwich from M & S, they did not have any. I can remember feeling as if I was falling backwards and someone asking if I needed help, I thought I was OK. Next thing was I woke up in an ambulance at 6.15p.m. several hours since I remembered. I had very low blood sugar and was told by the very kind medics I had a hypo episode, the staff in Tesco had seen me wandering around appearing odd sat me down and had given me a drink but I had than passed out. I wanted to get up and go home, I had only been shopping! But ended up in A & E the doctor informed me that due to very low blood sugar I would be kept in, that started two weeks of being in hospital.

I had always been fit, taken regular exercise, walked a couple of miles a day, did not smoke and drank low levels of alcohol. I generally looked after myself, I held a responsible, sometimes, stressful full time job.

Whilst in hospital, a large number of tests followed. I started with two hourly blood sugar tests 24 hours a day. Each test showed I had low blood sugar, especially overnight. After several days, I met Dr Karin Bradley and her team, she is an endocrinologist at the Bristol Royal Infirmary. Quite early on, she told me she thought I had an Insulinoma; a friend went off to explore the internet for me. Everything seemed to indicate it was rare, usually benign and could easily be removed via surgery, and noted that it could be difficult to locate. At this point, I was scared of what was happening to me, but I did not feel overwhelmed.

I left hospital taking Diazoxide, which is a drug that acts on inhibiting the release of insulin from the Pancreas, but does have many side effects. As an out-patient I then had, a MRI Scan, Endoscopy – which indicated a 5cm growth on my pancreas which was obscuring the vein to the spleen, CT scan and finally an 111 Octreotide Scan. Following all this, I was told that they had identified the Insulinoma on my pancreas and an area of concern on my liver, plus an area in my chest. Following this, I was told I would also need my spleen removed as the Insulinoma was obscuring the vein feeding it.

During this period I was taking my own blood sugar level tests, at home, they went from a low of in the mornings 2.1 to a high of in the evenings 19.7. It was a difficult time, as I had to eat every two hours, I had to be constantly aware of my sugar levels and I always carried a bottle of lucozade to drink and some biscuits to eat with me. Generally, I felt low, exhausted and depressed. On reflection, I also realise that over exertion and stress caused a significant drop in blood sugar levels. During this time, I was in regular contact with the Endocrinology team via e-mail and phone, which was extremely helpful.

In July 2008 I went into hospital for the operation. Mr Ian Pope operated me on and his team, who is a pancreatic specialist, this went very well; I went in to the preparation area at 8.30a.m. and woke up at 2.00pm in the recovery area. I was then transferred to the high dependency ward where I stayed for 3 days. During this period, I had intense 1 to 1 nursing and every monitor was checked and attended to as required. From there, I moved onto a general medical ward were I continued to have intensive care for a further 48 hours prior to be moved on to the ward proper. I then had four days during which time I slowly started to do things for myself, which was great. Since I woke up after the operation I realise I had felt so more alert and positive. The low blood sugar has stopped which in itself was a wonderful feeling.

I was told after the operation that my liver was clear and they had removed approximately two thirds of my pancreas, gall bladder and spleen as planned.

The recovery period from this operation is three months of rest and recuperation so I now need to rest and learn to do nothing.

In August 2008 the results from the surgery took a bit longer to come through than I expected. When they did, come through, it was quite a shock in that the areas removed had proved to be malignant which in turn means cancer. That it is not in my liver and that it is not a fast growing type is great news. I am scheduled for more scans in September 2008, to check on my progress and for the medical team to revisit the area in my chest. While not good news I feel under the circumstances I am doing pretty well to date. I hope my story helps you understand this rare illness and with the expert medical team that have supported me through this difficult year, I hope to continue to stay well and positive.

Elliot wright