Updated August 2017
Carole, diagnosed with a neuroendocrine tumour in 2014
I wanted to write this because my experience is different from anyone else’s that I could find at the time of my diagnosis. Hopefully it might help someone else who is in my position.
It was the end of 2013 and I did not feel unwell in any way. I was a really fit, happy and strong 50 year old who went to the gym and had a really active job. I had suffered from hot flushes for a few years (put down to the menopause) and had been on hormone replacement therapy (HRT) for a year. I didn’t feel that it was making much difference so went back to the GP. She thought my blood pressure was too high and decided that she wanted a kidney ultrasound and heart scan done before taking any more HRT.
It was during the ultrasound of my kidneys in January 2014 that, totally out of the blue, a large mass was spotted on my pancreas. The radiographer said nothing to me, however did arrange for an appointment for a pancreatic CT scan and I received the letter the following day, a Saturday. I was puzzled but in no way worried until Monday afternoon when I called the GP surgery to enquire about the appointment. That is probably the moment my life changed. Apparently the surgery had been frantically trying to contact me to come and see the doctor.
After a pretty shocking night, myself and my husband went to see the GP and were told about the mass. She quite bluntly said it was probably cancer, however there was an operation called a Whipple which could be done. (I now know that this was the wrong thing to tell me at that time.)
I was then left to wait almost two weeks for the CT scan to be done and wait for a hospital consultant appointment to tell me more about the mass. I was thrown into a state of complete despair and total blackness. I was WELL, this could not be happening to me!
I eventually saw two lovely doctors at Wishaw Hospital who also sadly assumed the worst for my diagnosis. The feeling of pity for me was strongly felt and although I was well now he said I would soon start to feel unwell because the tumour was so big, 8 cm across. The Macmillan nurse was introduced to me that day but then disappeared when the consultant looked at my CT scan again and felt that it was not behaving like cancer. He had hoped an endoscopy would show that the tumour was growing on my duodenum which he could remove easily. The endoscopy was done later that day but everything unfortunately was normal! He promised me that he would get to the bottom of things and get back to me the following day after consulting with his colleagues in both Edinburgh and Glasgow.
As promised he got back to me the next day and told me that his colleagues confirmed his suspicions of the tumour not behaving like a cancer. He did say that they thought it was something benign (also a fact that seemed to alternate depending on the medical professional on the day). The doctor wished me all the best on the phone and I knew this was not even nearly over.
The next step was to have a biopsy to find out what the tumour actually was. I was diagnosed with a pancreatic neuroendocrine tumour which I know now was malignant but low grade. The nurse described it to me as a “cysty” type thing and said I should Google it. My mental state was not improving in any way. I was traumatised, although looking back, the prognosis for me had improved.
The decision was made that a surgeon was confident enough to perform a Whipple and remove the tumour. This surgery was classed as preventative because no one knew what would happen to my tumour. I went through lots of tests over the next few weeks and scans. It felt like I was never away from hospitals (7 hospitals in total). There was another shock to cope with which was that a scan flagged up a tumour in my head! I was unable to cope with this information because researching the internet convinced me I had a genetic disorder which I could pass on to my children! A follow-up MRI was done a couple of weeks later which actually showed the tumour was unrelated and entirely benign. I have never felt so relieved!
Truth was that the plan was back on for the massive operation which loomed in front of me and I quite honestly remained traumatised mentally but a picture of health physically. I swayed between going for the operation and not, because I knew it was going to make me really ill.
Eventually the operation was done in May 2014 which was the day I knew my life would change and not for the better. It went without issue and I was out of hospital after a week. However the following months were very, very hard. I could no longer eat which was almost impossible for me to cope with and had diarrhoea for about 4 months. I lost almost 3 stones and every day for 6 or 7 months I would much rather not have been around! If not for the love and huge support from my husband, who was convinced that time would improve my condition, I am sure that I would NOT be here.
We had to cope with little or no help or support or even contact from any medical professionals because in my opinion they do not know how each person is going to recover, if at all. In my case the total lack of professional emotional support for us has been a huge failing. I would have liked to hear about anyone who could have reassured me that I might get better.
Well I am that person… Gradually and slowly things have improved. 2 years on I feel so much better. I have been back at work as a classroom assistant for 18 months, and fortunately I am pretty much as strong and fit as I was before. I have issues with my digestion which I am still trying to manage by taking Creon and watching carefully what I eat. I won’t ever be exactly the same but I am really happy with life now and have almost stopped resenting medics for “taking away” my health.
They call mine an “incidental find” – is it lucky or unlucky that it was discovered? I am not sure yet.
The future looks bright for me at the moment though and I am enjoying life again.
Update August 2017
I would like to update my story for anyone reading it.
It's now August 2017 and in June I had my 3rd year scan which thankfully showed no signs of any disease. My consultant says there could not have been any better results. Its great news for me and I will continue to get on with my life which will include as many breaks and holidays as possible with my soon to be retired husband! Fitting them in around my job which I still do at the moment. With regards eating, I feel that over a couple of months because my consultant has introduced an antacid (omeprazole) into my routine, I can eat a lot better now without too many problems. I do eat carefully though and stay away from oily, processed or spicy foods and don't eat cakes or heavy pastries either but I can manage to eat chocolate! Thank goodness!
Good Luck to anyone facing this. It has been brutal and a long slog but I would say that I am as normal as I can be.