Type 3c diabetes and pancreatic cancer
Ali Stunt, Founder of Pancreatic Cancer Action, lives with type 3c diabetes as a result of pancreatic cancer. Ali spoke to Diabetes UK about her journey, this is her story.
Diagnosed with Type 2 diabetes
In June 2006, I was feeling a bit under the weather and my GP sent me for a blood test. That came back with high blood glucose levels, which was indicative of Type 2 diabetes. We both thought it was weird, because I was 40 years old, had no family history of diabetes and didn’t have any of the risk factors for Type 2 diabetes, such as being overweight or having a sedentary lifestyle. I was told that I had to watch my diet, which I thought was quite odd because my diet was pretty good. I cut out treats and was given a blood glucose monitor, but I wasn’t assigned to a diabetic team or anything. It was just an odd thing to have happen.
A year later, I developed pain in the middle of my back, as though a tennis ball was pressing against my bra strap. When I was eating, I’d experience a gnawing pain as my food went down that would leave me doubled up. I was also losing weight, having intermittent diarrhoea and generally feeling rubbish.
The thing that saved my life was that the pain quickly accelerated in severity. I ended up in A&E with suspected gallstones. When I discovered I needed an ultrasound to confirm that diagnosis, which would take up to six weeks, I was fortunate to be able to use my husband’s private medical insurance to be seen in two days. I wasn’t worried it was anything sinister, I just didn’t think I could cope with the pain for any longer.
An emergency ultrasound, followed by a CT scan, found a five-centimetre mass on my pancreas.
The diabetes I’d been diagnosed with a year earlier was a symptom of pancreatic cancer.
At that time, I knew nothing about pancreatic cancer. I knew I had a pancreas and what it did, but that was the extent of my knowledge. When my surgeon said they were going to operate in a weeks’ time, I didn’t realise that only 8-10 per cent of people with pancreatic cancer are able to have that operation. It was a scary time for me, my husband and our sons, who were then aged 14 and 10. Afterwards, realising I’d been so fortunate, I made it one of my missions to not just improve the early diagnosis of pancreatic cancer, but also to make sure people got easy-to-understand patient information, because when I had chemotherapy I realised that nobody really tells you the nuts and bolts of it. They skirt around the subject.
The surgeon removed my spleen and 80 per cent of my pancreas, leaving a little bit at the head. I was referred to a consultant endocrinologist, who started me off on tablets to manage my blood sugar levels.
Pancreatic cancer has left me with Type 3c diabetes.
Effect on friends and family
When I was diagnosed with pancreatic cancer, it was quite a scary time for my husband and our sons, who were then 14 and 10. They were the age that they knew how to Google and they scared themselves silly. In that situation, there’s nothing you can really do to protect them. I tried to be as positive as possible. My boys both dealt with it in very different ways, because they are very different personalities. One kept it to himself and the other just screamed and said they didn’t want it to be happening. We decided to be very honest about what was happening. They would know if we were trying to pull the wool over their eyes.
My biggest challenge
My biggest challenge with having diabetes has been finding the time to avoid the spikes in my day. If somebody looked at the output from my blood glucose monitor, they might think, ‘this woman is not managing very well.’ But for me, averaging 10mmol/mol is quite a good day.
I find my Type 3c diabetes very tricky to manage, because I’ve got that little bit of pancreas left and sometimes it decides to kick out a bit of insulin and other times, it doesn’t! I have to really watch my levels, so I have a glucose monitor that’s blue-toothed to my phone that lets me know if I’m going low.
Whilst there are times when having diabetes gets me down a little bit, I do realise that managing my blood sugars is keeping me alive and keeping me functioning. It’s just something I’ve got to do.
Diet, nutrition and active living
I try to carbohydrate count and adjust my insulin dose as much as possible, but I don’t always get it right because I still have a little bit of pancreas that hasn’t completely packed up. It’s still doing some stuff.
I exercise which I find can make my blood sugars can go high, but it’s all trial and error.
There’s this perception that I have to have a really strict diet, but my diabetes can’t be controlled purely through diet. Having a healthy diet is helpful, but if I want to have the odd dessert, I can. I just have to adjust my insulin. There’s a lot of ignorance about diabetes generally, and if you say you have Type 3c, nobody knows what you’re talking about.
What I wish I knew before
That when I was originally incorrectly diagnosed with Type 2 diabetes, it wasn’t diabetes in a normal fashion. It was a symptom of pancreatic cancer.
Diabetes UK and me
A few years ago, I was invited to speak at Diabetes UK conference as a case study about Type 3c diabetes. There are a lot of people who don’t know that it exists. Some people – including those in the medical profession – look at me quite strangely when I talk about this type of diabetes, because there are a lot of people who don’t know that it exists.
One of my GPs, who has thankfully now retired, told me I was an attention seeker and that I was making up my own type of diabetes! I was so cross that I got my consultant to write him a letter, because I wanted him to be aware of the facts if he was potentially treating people with this condition. We need to raise the profile, because almost 50 per cent of cases of Type 2 diabetes could actually be a form of Type 3c
“Whilst there are times when having diabetes gets me down a little bit, I do realise that managing my blood sugars is keeping me alive and keeping me functioning. It’s just something I’ve got to do.”