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.


Enola's Story


 Enola, from Essex, UK, was diagnosed with malignant insulinoma in 2007.

I called my best friend to say that I would be with her in 10 minutes. Instead, I ended up two villages away with no idea how I got there. I drove 7 or 8 miles with limited vision, it was a bit like looking through a pinprick in a black piece of cardboard. I recall hitting the curb several times with no vision of anything around me. When I did eventually stop, some 15 minutes later, I was confused; I had double vision, was very shaky, and was weak and extremely disoriented. Somehow, after 20 minutes or so sitting in the car whilst I regained single vision, I managed to drive to my friend's house. She tells me that I arrived there driving very slowly with the car in second gear. She took me to my local A&E where they carried out some basic tests, including a blood glucose test, which had a reading of 2.6. Then the advice they gave me was to go home, eat a bar of chocolate and take a couple of aspirin.

I knew something horrible had happened to me. I wasn't sure what it was, I thought it could be a stroke, and insisted that the A&E doctor referred me to a specialist. A few days later I got an appointment with a cardiologist, who dismissed all of my symptoms out of hand and said, I was in danger of seeing ‘one too many ologists’. This was the same cardiologist who had me on tablets for high blood pressure, which disappeared once my insulinoma was treated. I was also referred, by the A&E doctor, to a neurologist. The neurologist was brilliant he actually took the time to listen to me. Although he did not think it likely that I had a neurological disorder he sent me for an MRI of my brain. The scan showed that nothing was wrong. He did not dismiss the blackout and continued to ask me quite a few questions about my health leading up to it.

I described the preceding week when I had ‘nearly’ fainted on about four separate occasions whilst at work. I managed to stave off unconsciousness by eating glucose tablets by the dozen and by eating anything sweet.  I was also drinking a bottle of Gaviscon every three days or so as I had very painful indigestion.  Other symptoms included a weight gain of approximately three stone (over a period of a year), high blood pressure, tingling lips and tongue, shaking hands and light headiness. My tummy was also very distended and swollen which made me look as though I was six months pregnant. Incidentally, the neurologist had a copy of the report from A&E, which contained no mention at all of my glucose reading. I mentioned my glucose level almost in passing as I thought it was low at.2.6. He said immediately that I might have a problem with my pancreas and said that I should see an endocrinologist.   

Several weeks later at my appointment with the endocrinologist, she also suspected a problem with my pancreas. Following a 14 hour overnight fast, my glucose level was 2.2 mmol/L, and 2.3 mmol/L on two consecutive days. My insulin levels were also high at 138.6 mIU/L and 145.7 mIU/L respectively (the normal range is up to 24.9) Along with an elevated C-Peptide of 6.68 ug/litre (the normal range is up to 3.2). A CT scan with 3D reconstrction of the abdomen revealed a 2.4 x 2.4 mm vascular mass in the tail of the pancreas with some abdominal lymphadenopathy. Other scans followed including an MRI, an endoscopic ultrasound scan and a gallium 68 octreotate (which showed the tumour up like a light bulb). 

My diagnosis was an insulinoma. Insulinomas are rare neuroendocrine tumors with an incidence estimated at 1 to 4 new cases per million persons per year.  95% of all Insulinomas are benign. Mine, unfortunately, turned out to be cancerous with the complication of a metastatic spread to lymph nodes.

In April 2007, I had a distal pancreatomy to remove the tumour, a splenectomy and eight lymph nodes in the pancreatic area were removed. The operation itself went well but I had major post-op complications, which included a collapsed lung, pneumonia, sub-phrenic abscess, analphalytic shock, weight loss of 14kg, and to top it all I contracted MRSA. By July 2007, I made a good recovery and returned to full-time work.

In August 2007, follow up scans showed another insulinoma near my adrenal gland and several enlarged lymph nodes. In September 2007, I underwent keyhole surgery to remove the tumour and lymph nodes. Again, this was not without complications, which included a bleed from my kidney and a 3-pint blood transfusion and a pancreatic leak. Following the removal of more of my pancreas I became a type 2 diabetic.

Recovery was slow and painful. By December 2007, I was feeling much better and decided to return to work, full-time in January 2008. My condition is monitored very closely by Dr Caplin at the Royal Free in London and a CT scan during January showed up a suspicious lesion in my liver. This was confirmed by an MRI scan but on this occasion the gallium 68 octreotate PET scan did not light up. In April 2008 I underwent Radio Frequency Ablation (RFA) to remove the lesion on my liver.

In July 2008 I managed to get an incisional hernia at the site of my first operation. The procedure involved opening up the entire scar. I also had a tumour like mass removed from my abdomen, which fortunately turned out to be benign. Recovery again was very slow and painful. 

I have three grown up children aged 26, 22 and 20. Despite a diagnosis of cancer I try and stay positive about the future. I continue to be closely monitored by Dr Caplin, and my aim going forward is to help raise awareness of insulinomas.

Elliot wright