Patient Stories – Carole
My problems began in August 2001.
I had just returned from holiday when I experienced severe rectal bleeding.
After a home visit from my GP, I was referred to a consultant within a couple of days.
I had a sigmoidoscopy, (a short, flexible, lighted tube is inserted into the rectum to examine the large intestine through the last part of the colon, called the sigmoid or descending colon) but, due to the excessive amount of blood, he could not give me a diagnosis.
‘A surgeon advised me that he wanted to remove the tumour as soon as possible’
He passed me on to a gastroenterologist at Coventry’s Walsgrave Hospital who carried out a colonoscopy (a further procedure to allow a doctor to look inside the entire large intestine) and removed some tissue for a biopsy.
When I came round from the anaesthetic he told me that he had found a tumour in the colon, near the appendix. It was unexpected and I admit I was shocked and horrified.
A surgeon advised me that he wanted to remove the tumour as soon as possible.
‘I was told that I may have a cancer called carcinoid’.
A follow up appointment with the surgeon proved interesting but even more shocking.
I was told that I may have a cancer called carcinoid but this would be confirmed when the tumour was removed, and after another biopsy, this time from the liver, where the disease had spread.
But reassuringly he thought I would have a life expectancy of years rather than months.
I went away, having never heard of carcinoid, to browse the web and find out more.
We were feeling shell-shocked as we just heard the “cancer” word weren’t given much information about the disease. I was beginning to think the worse – would I still be around to see my daughters graduate from university, or would I ever see them married, or still be here to play with any future grandchildren?
I found quite a few stories of Americans who had had the disease for many years and were still alive 10 years on. This was a much better than I had hoped for or expected.
As the surgeon, Mr Wong, didn’t seem to know that much about the disease, my husband and I printed off everything we could find and took it into the hospital when I was admitted on 10 September 2001, less than 2 weeks after the initial problem. Everything was happening so quickly.
The awful day of 9/11 proved to be my fateful day as well and I think I must have been one of only a few people who did not witness the terrible traumas of that day on their TV screens because of the operation.
Following the op I was in the high dependency unit (HDU) for five days and remained in hospital for nearly two weeks.
But it was quite an experience as I was treated like a VIP and must have been visited by about 20 junior doctors, all asking the same questions.
I was a rare case for the hospital – in fact the house registrar was so keen to learn more about carcinoid because I was the first case he had seen. But I was impressed: he took all my paperwork on the disease, read up more and later used me as his case study in a presentation to senior registrars and consultants at the hospital.
Hopefully it was useful and I know that what they learnt about me has helped other patients, as I received a telephone call from the wife of another patient and Mr Wong had passed on all the information we had given him – almost word for word!
‘He thought I would have a life expectancy of years rather than months.’
A couple of weeks after my op, I had my check up with the hospital’s oncologist, who told me that there wasn’t much more they could do for me until I experienced more problems because of the tumours, which could take several years.
But I was unsure about this, because it seemed such a different way to treat cancer compared to what we had read on the web. One American patient had written “never let the doctors tell you they will wait and see what develops”.
So I asked if I could be referred to Martyn Caplin at The Royal Free in London, as my research suggested he seemed to be ‘the’ man for carcinoid. And am I glad I did? Most definitely!
I am one of the lucky ones who has a very slow growing form of the disease and although I have 30+ lesions on my liver, I have generally been well since 2001 with just the assistance of a strong complex Vitamin B supplement that I take to aid the digestion process due to part of my colon being removed.
‘I have been able to live normally, carrying out quite a stressful job, taking holidays as normal’.
During these 4½ years I have had six monthly check ups which have included blood and urine tests, CT scans, MRI scans and a couple of nuclear medicine scans with MIBG and Octreotide.
I have been able to live normally, carrying out quite a stressful job, taking holidays as normal, but I do get tired and usually fall asleep on the settee by about 9pm.
‘I have just had the good news that my primary care trust is willing to fund the injection, unlike some other areas that refuse to do so.’
However, on my last two visits my hormone levels from the blood and urine tests have increased, so it has been decided I should start to have monthly injections to inhibit the hormones being produced by the tumours.
I have just had the good news that my primary care trust is willing to fund the injection, unlike some other areas that refuse to do so.
Having been through this experience I began to look back on other health problems and wonder if they were linked.
In 1984 I was diagnosed as having irritable bowel syndrome (IBS) when a couple of stool samples showed traces of blood. I had a barium enema but nothing ‘untoward’ was found.
Then, in June 1986 I had appendicitis and my appendix was duly removed. I assume that no further tests were carried out on the appendix.
In the year before my rectal haemorrhage I had visited the doctor on a couple of occasions. The first time included my reporting extremely loud tummy rumbles and the second was for a recurring bloodshot eye.
Perhaps my appendicitis and ‘irritable’ bowel in the 1980s was the start of my problems with carcinoid? It has to be supposition because I shall never know for sure.
I now know that the rumbles were caused by excessive hormone release and the eye problem occurred because of sudden flushes, which caused the small veins to rupture. As I was in my mid 40s when all this occurred, I had assumed that the flushes were due to my age and ‘the change.’
As I have the slow growing type of carcinoid – and because of the large amount of liver lesions found – the experts feel I must have had the disease for many years because of the size of the spread.
‘Perhaps my appendicitis and ‘irritable’ bowel in the 1980s was the start of my problems with carcinoid.’
But perhaps with future funding through the NET Patient Foundation we can all work to help our doctors start to think about carcinoid when patients turn up at the surgery with these ‘vague’ symptoms.
