Pancreatic Cancer Action Blog

Five years ago today, and at the age of 41, I was told the devastating news that I had a mass on my pancreas. Within days I knew that that mass was pancreatic cancer, a disease I personally had never heard of before. Soon, searches on the Internet revealed the terrifying extent of what I was facing and, although I was diagnosed in time for surgery, I really didn’t appreciate that this was my only hope of long-term survival.

The year I was diagnosed (2007), Steve Jobs announced the launch of the iPhone. Since then we have seen the start of economic decline with Black Monday in 2008, Barack Obama became the first African-American to be elected President of the United States, the Arab Spring began in earnest, the UK has a coalition government, Prince William married Kate Middleton, The Queen has celebrated her Diamond Jubilee, London successfully staged the Olympics and a space craft called Curiosity landed on Mars. Sadly the Apple Co-founder Steve Jobs passed away from pancreatic cancer just last year.

With such poor survival rates for pancreatic cancer, I found it almost impossible to believe I would be alive the Christmas following my diagnosis let alone still be here to witness the many changes our world has seen in the past five years.

On 4^th May, we attended the London Pancreas Workshop at Barts and the London Hospital – a biannual conference which attracts delegates from the UK and abroad, comprising of clinicians, scientists, pharmaceutical company representatives and pancreatic cancer charity representatives. Wide ranges of topics relating to pancreatic cancer clinical and scientific problems were discussed.

It’s really important that these conferences exist to enable those trying to improve pancreatic cancer survival to get together and talk about the issues and the progress that is being made, and it is for this reason that we at Pancreatic Cancer Action were keen to support this conference by sponsoring the early diagnosis session.

Mushrooms and eggs are said to cut pancreatic cancer risk

There’s been a lot in the press recently about what we eat or what medications we take and our pancreatic cancer risk. The most recent of note includes research which identified that processed meat increases risk. Another is that the anti-diabetes drug metformin reduces risk of pancreatic cancer – but only in women – and that long-term use of another group of anti-diabetes drugs, sulfonylureas will increase risk of pancreatic cancer.

And then there are the headlines – one recently in the Daily Mail was along the lines of “Why a mushroom omelette can cut pancreatic cancer risk”

A couple of years ago there was excitement about research which revealed that drinking two or more cans of sugary fizzy drinks substantially increased the risk of getting pancreatic cancer. This got (and continues to get) considerable press coverage despite the fact that it was based on only one study of around 700 people in Singapore!

I don’t know about you, but I find this ‘advice’ in the form of sensational headlines completely unhelpful. Most of the ‘findings’ do have some scientific basis and most are published in peer-reviewed academic journals. However once it has gone to the popular press, journalistic licence can take over, resulting in misleading headlines.

This week we put up another pancreatic cancer patient experience on the Pancreatic Cancer Action website. Each experience of pancreatic cancer, all written by the patients themselves, reflects the emotions, the physical and sometimes mental pain and also some of the triumphs, of patients dealing with a very difficult diagnosis and further punishing treatments. And the feedback we get from the public is excellent – no leaflet or website information page, no matter how good, can really tell it how it is and I know patients (including myself) really value these stories.

So when Jan approached us to tell her story, we were delighted she wanted to share. Jan’s story though has caused controversy because Jan has been diagnosed in time for surgery yet she cannot decide whether to go through with the operation. I have never had direct experience of this attitude before and to be honest it was one that shocked me.

My own reaction when I was diagnosed was one of relief that I could have an operation to remove my tumour. Ignorance about the disease at the time meant I didn’t actually realise how fortunate I was – that I am one of only 10% of patients to be diagnosed in time. A quick glance around the Internet (including on Pancreatic Cancer Action’s information pages) will soon tell you that currently surgery is the only potential for a cure and you would be daft not to take up the option. Pancreatic cancer statistics reveal very low survival for the disease yet if patients are diagnosed in time for surgery, their chances of living beyond five years increases ten-fold.

So it is not surprising that Jan’s story has sparked angry comments on the Pancreatic Cancer Action Facebook page. Bereaved relatives cannot understand the actions of the (and I quote) “Selfish Lady” Other comments have been very supportive and encouraging, coming from patients who have undergone successful surgery and are here to tell the tale many years later.

So, is she being brave or is she stupidly throwing away a potential lifeline?

Jan’s story is complicated by the fact that she had a terrible experience with a surgical procedure in 2009 and this, in my opinion, is making her fearful and is possibly clouding her judgement about her decision whether to have surgery for pancreatic cancer.  Personally, I would implore her to have the surgery. Yes it’s a major operation and there are risks, plus afterwards she is likely to have to have further treatment in the form of chemotherapy. Jan though is young and fit and she is being treated in one of the UK’s pancreatic cancer specialist centres and is in good hands.  This however, is not my decision; it’s Jan’s. I wish her well and I’m sure she will make the right choice – for her.

Click on the link to read Jan’s Pancreatic Cancer Patient Experience and do tell us what you think.

On Monday I travelled to Manchester for the first of what will be many meetings to discuss the update to the NICE Referral for Suspected Cancer Guideline for GPs. Pancreatic Cancer Action is a stakeholder in this process and Monday’s meeting was to discuss the scoping of the update.

One of the changes from the current guideline (last published in 2005) is that the new guideline is to be more symptoms based than previously. I can hear you all saying now that surely the current guideline is already symptoms based and why do we need the change? Well that is true to a certain extent but the current guideline was structured around cancer type rather than presenting signs and symptoms so the guideline user (the GP) had to first think cancer, then think site and finally compare the patient’s symptoms with the guideline.

A little back to front, especially for pancreatic cancer, when it is difficult to get clinicians to think of this cancer first off when making a diagnosis.  This goes some way to explain why general practitioners in the UK diagnose only 18 per cent of cases.