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Jo

Posted by: Jo 9 August 2018

Jo shares her story of being diagnosed with a pancreatic neuroendocrine tumour

Jo

I started running when I was 40 and whilst training hard for a running event, I started to get regular and painful indigestion. Every time I bent over doing something physical like gardening I would get acid reflux. I visited my GP and was given omeprazole to treat my symptoms. I then began developing serious night sweats where water would pool on my chest to the extent I could splash it. I went back to my GP and was given more tablets to deal with this.

At the time I was also suffering with horrific gynaecological issues and was dealing with lower back ache, sickness and diarrhoea every seven to eight weeks and the GP diagnosed IBS (irritable bowel syndrome) linked to my gynaecological issues. I was eventually diagnosed with fibroids in my womb and had a hysterectomy in November 2015 which eradicated most of my symptoms and definitely improved, but I still seemed to get regular episodes of upset stomachs so I went back to the doctor and was diagnosed with IBS again. I knew that this wasn’t right because my stress doesn’t manifest in this way.

Trips to A&E

In March 2016 I tore my meniscus, was on crutches and taking a lot of ibuprofen. I started to throw up violently, to the point that it wouldn’t stop, the only way to stop it was at A&E with intravenous anti-sickness medication and saline to rehydrate me. This happened twice over the course of a few weeks in March 2016. My GP wasn’t keen on doing diagnostics and I ended up being diagnosed with the Norovirus after the second episode of vomiting. I was furious at the time and remember calling my husband on the way out of the surgery as I knew no one else had the virus and felt if it was this I would have passed it on or at least have known where it came from.

When it happened the third time I booked a telephone interview with my GP and told him I wanted referring and said I would go private. I worked for Bupa at the time so this was a no brainer as it felt nobody was going to get to the bottom of this without a more focused set of tests. Over the course of the next few months I had more episodes of sickness to the point of needing to go to A&E. In the coming weeks I visited A&E several times every 7 – 10 days, once it took so long to see me I was laid in triage on the floor being sick into a grey bin. Other times I would be shivering cold after being sick and couldn’t find a blanket – my husband had to go and find one from a cupboard – or I would be so dehydrated that they had to use an ultrasound and a baby needle to cannulate me.

Mid-April I was booked in for an endoscopy and colonoscopy at the local private hospital - the procedure was booked in for the Friday. On the Tuesday I started feeling sick again and text my husband to warn him we were likely to be in A&E that evening. When he got home we went to hospital, it was extremely busy and it took hours for me to get the anti-sickness medicine. At around 10pm one of the nurses came to say my amylase levels suggested I might be an alcoholic – I was barely eating at this point never mind drinking! I was told they were keeping me in and moving me to a different hospital. I sent my husband home at this point and I was moved at around 5am. 

When I got there I felt I was treated in a way that reflected the view I as an alcoholic. I was in a side room, barely saw anyone, received no instruction about the CT scan preparation, was offered no food - I hadn’t eaten for days. I had to buzz and ask for a sandwich later that afternoon. The CT scan showed up lesions of the liver. Which the consultant wasn’t too worried about and as I had gone private and got an appointment for an endoscopy on the Friday, we then agreed that the NHS hospital would not do anything further for me. The consultant did call the private consultant to discuss and agree. I also wanted to go home anyway – I had had enough by this point.

Getting a diagnosis

I woke up on the Friday morning of my appointment at 4am very unwell again and being sick regularly. I called the private hospital and asked if I could come in early and get the anti-sickness medication so I could still have my procedure and they said yes. We went to hospital and had staff waiting for us at the doors and within fifteen minutes of being admitted I was in bed, cannulated and wrapped in blankets and my husband had a cup of tea in his hands. Very different experience to A&E! When I was sick the nurses did not step back and leave me to it, like I had experienced in A&E, they came close and held my hair, stroked my hand and reassured me.

The consultant asked if I still felt able to go ahead given I was being sick almost constantly (I filled two grey hospital pans while we were speaking about the procedure) but I said yes so had an endoscopy and a colonoscopy while continuing to be ill.  The doctor straight away picked up that he suspected a hormone imbalance, took bloods on the day and the week after an MRI scan showed a tumour that led to a gastrinoma diagnosis.

The consultant then said he had gone as far as he could and immediately referred me to a pancreatic specialist centre. I was then transferred to the MDT (multidisciplinary team) and a week after their conclusion I had a full suite of tests over a five day period. I had an endoscopic biopsy of the tumour, a CT scan, Octreatide and met the consultant on the Friday of the same week. They had identified a 2.5cm malignant tumour in the middle of my pancreas. 

Treatment

The treatment plan was surgery and we agreed I would go for the central pancreatectomy as a way of preserving as much of my pancreas as possible. I underwent a central pancreatectomy that took nearly six hours on 14th July 2016. I was expected to be in hospital for 7-10 days but the amylase was not draining and therefore I ended up being in hospital for a month but eventually persuaded them to let me go home and manage my own drain for the further two weeks it was in.

Two years later

It has now been exactly two years since my operation and I have had an all clear annual check-up scan recently. I am fit, healthy and exercise regularly. Post-operation I started 1-2-1 Pilates and then gentle spin class from 8 weeks. Getting back to health and maintaining it is almost an obsession! I believe being fit and healthy going into all of this aided my recovery and ability to cope.

I have recently been experiencing abdominal swelling and a few other symptoms. I have spoken with my consultant – he suspects pancreatic inefficiency as 15% of my pancreas has been removed. We have agreed that trying Creon ‘might help/can’t hurt’. To be on no medication after such an operation was unusual, so if I need to take Creon to help my body then I will. The treatment I have had from the teams at the specialist centre has been incredible – I am no longer under private health but I continue to get amazing support.

Similarly I bumped into my consultant at the private hospital a year or so after my operation and it transpires he had been tracking my progress and was extremely pleased at how well I looked and how I had recovered. I have seen my GP since and did talk to him about my diagnosis and his response was that this is extremely rare and difficult to diagnose. IBS was acknowledged as the catch all it seems. Fortunately my tumour was functioning, and causing symptoms, that I couldn’t ignore. My consultant thinks the indigestion was the start of the slow-growing tumour, 6 years previously.

When it comes to your health you have to be assertive, face into what might not feel right, or might have changed and own your own health as nobody else will.

August 2018

Read our information on pancreatic neuroendocrine tumours

Read more about surgery to treat pancreatic cancer