Jane Aylott, 55, works in research administration and lives in Essex with her husband, George. They have three adult children, Charlotte, Joe and Sam. In February this year she was diagnosed with a neuroendocrine tumour (NET), a cancer that was thought to be rare, but is now being discovered more often. Here, she tells her story.
The nagging stomach pain that sent me repeatedly to the GPs over four years came and went but was always on my left side and in the same place. Various GPs examined me but none could find anything sinister. Probably reflux or irritable bowel syndrome (IBS), was the likely verdict. I was still worried though, because the pain was quite insistent, so I kept going back.
As so often happens at my age, they thought the problem might be gynaecological. After various tests and scans I ended up having a hysterectomy because of an ovarian cyst and heavy periods, but this still didn’t cure my stomach pains or assuage my worries.
As part of these investigations, I was sent for an abdominal scan at my local hospital in March last year, where an eagle-eyed radiographer spotted “something on the liver”. Probably nothing, she said, something I was born with, a “haemangioma”. I went home and Googled it and was not unduly concerned as haemangiomas are sort of internal birthmarks.
A few months later however, I fainted on the train to work. It had never happened before and quite alarmed me. The GP sent me to see a colorectal consultant and following another scan the consultant found some “irregularities” – tiny blockages in my spleen and gastric system – which I now know were markers for my cancer, but nothing was said to me at this point. The consultant missed the tumour. This time, however, my GP referred me to a gastroenterologist at Whipps Cross University Hospital and I was eventually seen in January this year.
At this point, despite reassurances that it wasn’t cancer, I was becoming concerned. Something wasn’t right and no one was getting to the bottom of it.
Doctors are taught that when they hear hoof beats, suspect horses, not zebras. Well, sometimes it is a zebra. Unbeknown to me, the scan was reviewed by a multi-disciplinary team (MDT) who suspected more and quickly arranged a biopsy for me. I knew then that cancer was a possibility, but I felt so well and the staff were so reassuring, I thought the chances were still slight. The biopsy was on my liver and was a very simple, painless day-patient procedure.
A week later, a nurse called and asked if I could come in to hospital immediately. I was still feeling blasé about the results and asked if I could come on my day off. When she said no, it was urgent, I knew it was serious. I pushed her to give me a clue on the phone. Reluctantly, she told me the results indicated a neuroendocrine tumour (NET) – cancer. I was, frankly, terrified. I had never heard of it and Googled it before I went to the hospital. I wished I hadn’t.
There were very scary figures about mortality rates, though later I found these were out of date. I went to my appointment feeling I might have only months to live – such a surreal notion when I felt so well. George, my husband, of course wanted to come with me, but I wanted to go alone. I needed time to process it all.
A consultant and gastroenterology nurse took me through the explanation. I learnt that a NET is a tumour of the neuroendocrine system, which manufactures hormones, such as serotonin and insulin. Neuroendocrine cells are spread throughout the body in organs such as the stomach, bowels and lungs. NETs are classified according to the organ in which the cancer started. In my case, it was my pancreas, and possibly why I had stomach pains on my left.
The doctors thought that mine had metastasized (spread to other parts of the body), but they hadn’t yet established the grade and where else it might have spread to, apart from my liver. It all sounded very gloomy and I felt low when I left, despite reassurances that it could be treated.
I was lucky to be referred to a Centre of Excellence at the Royal Free Hospital in North London led by Professor Martyn Caplin, a world renowned specialist in NETs, where they see up to 240 new NET cases each year.
The short wait for my appointment was agonising. I had so many questions and not knowing how long I had left to live was horrendous. I underwent various tests prior to the appointment to try and establish the grade of tumour and where it had spread. This time George, who had been my rock throughout, came with me. We immediately recognised Professor Caplin from watching information videos online. He was so lovely, patient, courteous and informative but when he confirmed my NET had metastasized to my liver, so was incurable, my spirits plummeted. When I tentatively asked how long I had to live, Professor Caplin said “multi years”, which made me feel so much better. Obviously there are no guarantees.
In fact, later, when we left the hospital vastly relieved to have a future measured in years, George said it was the best day of his life, then corrected himself and said after his wedding day and the births of our children! I appreciated the sentiment.
Professor Caplin told me the primary site was the pancreas and there were a number of treatments. The first is monthly injections of a drug called Lanreotide that hopefully suppresses further growth of tumours and I will find out how that has worked when I go back this autumn.
The hardest part has been telling our children, who all took the news in different ways. My daughter was pragmatic, my son, away at university, was upset as he had never heard of it, and my younger son, doing his A levels, took it in his stride.
Another struggle has been the psychological aspect. I know I am lucky it has been found at this stage, lucky that I am being treated at a centre of excellence. I know others around the world struggle to get a diagnosis and treatment. Nevertheless I still worry about random aches, about the time I have left, and I wonder if I could cope with invasive procedures and side effects. I’m managing without counselling and I never forget that this is a sentence for my family too.
It makes me realise there is no point in worrying about the minutiae. I’m grabbing life with both hands and we’ve just booked flights to a colleague’s wedding in Italy. I love my job at Queen Mary University of London where I’m senior research administrator and I work full-time. On a good day I can sometimes even forget I have cancer.
Meanwhile I want to raise awareness of NETs. I remain in the early stages of my journey, but it’s not one I can opt out of. I still don’t know the extent of the cancer, such is the complexity of NETs. I just take it one day at a time.
What are the symptoms of NETs?
You may experience all or some of the following:
- Pain that comes and goes
- Feeling full
The incidence of NETs has increased markedly in the past 15 years, which is probably due to the increase in scans. Many people are unaware they have tumours as it’s often attributed to Crohn’s disease or IBS. Three thousand new cases are diagnosed in the UK each year.