Katherine: Pancreatic Neuroendocrine Tumour, Diagnosed 2010

KatherineI am 54 years old and work as a teacher. Up until Easter 2010 I had no idea there was anything wrong. I was due to fly out to visit a friend in Spain over the holiday and had noticed a mild ache in my lower back. I also noticed that my urine had become very dark and had quite a strong smell. I have many years ago, had kidney infections and wondered if it might be happening again. I sadly don’t speak a lot of Spanish so thought I would ask my doctor for antibiotics ‘just in case’.

My GP tested a urine sample which was clear, but thankfully sent me the same day for an x-ray and blood tests at the hospital, thinking that it was a kidney stone. I went on my holiday without a care in the world. I took the antibiotics with me but didn’t need to take them as the pain had settled down.

On my return I had a letter with an appointment to see the urologist at the hospital. Thankfully a friend came with me. The consultant had the unpleasant task of telling me that the x ray had shown nothing on my kidneys but had identified an 8cm growth on the body and tail of my pancreas. He referred me on to another consultant and hospital. I think I was in shock. It was totally unexpected.

I knew nothing about pancreatic cancer other than some where, in the back of my mind I new it was one of the ‘worst’ ones to have. Inevitably I looked it up on the internet and frightened myself to death with the statistics. The worst part was having to tell my only daughter, who at the time was 19. I’m a single parent so it was tough. The waiting and not knowing for certain was also hard. I decided that the best way forward for me was to carry on with my normal routine, so I went back to work and completed the school year.

The next consultant told me that he would need to refer me on again, this time to a Mr Smith at St James’ in Leeds as I needed to be seen by a pancreatic specialist. Again, the wait was difficult as no one knew at this stage whether the tumour was malignant (although they thought it was) and whether or not it was operable. By this time I had accepted that I was very likely to die and quite soon!

I did all the necessary things: made a will, discussed funeral arrangements with friends etc! I have a really strong faith and know this helped me to cope. Huge sigh of relief on meeting Mr Smith. He was lovely, very human and reassured me that my case was operable. I had a distal pancretectomy, removal of the spleen and several lymph nodes at the beginning of Aug 2010.

I was discharged after a couple of weeks with a drain still in,the operation having gone well. Sadly I had to be re-admitted only a couple of days later as I had complications with internal infections as my pancreas refused to give up the ghost and continued to produce fluid which of course is an acid. This happens to a very small number of people and I just happened to be one of them. I finally escaped at the end of Nov. Phew! The team in Leeds were fantastic. I can’t thank them enough. It took me a long time to recover properly but eventually I did and returned to work and a normal life.

I’m not even diabetic which is marvellous. Silly as it might sound I feel hugely fortunate. My cancer although malignant hadn’t metastasised and was a neuroendocrine tumour which is very rare but is much less aggressive and slower growing than pancreatic ductal adenocarcinoma. I have been regularly scanned over the past year and all of the scans including the most recent one this August was completely clear. I go back in a year’s time to be checked again but am confident that this will also be clear.

When I look back I can think of little things that might have been linked such of a couple of occasions when I had to make a hasty retreat due to sudden sickness and diarrhoea. I remember being up a few nights feeling most unwell. I also felt very, very tired but put it down to a busy life, challenging job, bug etc. I certainly didn’t think that I was seriously ill. I would just urge anyone to get themselves checked out with their GP if they notice anything out of the ordinary.

My tumour was completely resected but only because, despite it’s size it was caught in time. If you do get a pancreatic diagnosis, don’t give up. Stay positive and fight it. I hope to be around for many more years.  I’ve made a list of things I’m determined to be around for: my daughter’s 21st, graduation, first job, first house, engagement, wedding, baby. Need I go on? Poor girl doesn’t know any of this. She’d be mortified! Even if I don’t make them all any that I do make will be a real bonus.