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.