Today came the remarkable news that researchers at Johns Hopkins University in the USA , and published in Science have developed a non-invasive blood test that can detect 70% of eight common cancers, including pancreatic cancer – even at the early stages.
They have even said that this is relatively inexpensive; the same cost of a colonoscopy for example.
The way the test, known as CancerSEEK, works is to detect DNA mutations and proteins that are ‘shedded’ by the tumours into the bloodstream. The challenge has been that these circulating DNA mutations and proteins are small and have previously been difficult to detect, especially in early tumours.
8 out of 10 patients are diagnosed with pancreatic cancer when it has spread to other parts of the body making the disease incurable, so we desperately need better ways to diagnose pancreatic cancer earlier to give patients the best chance of survival.
This blood test is a really exciting development. While a 70% success rate needs to improve, the fact that it can detect some early pancreatic cancers could be game-changing for patients.
This test will be particularly important for those who are suffering vague but persistent symptoms (such as early pancreatic cancer patients) and gives a potential tool for GPs to rule cancer in or out.
The caveat is that it now needs to be tested on people without a cancer diagnosis to see if very early disease can be detected even when patients have little or no symptoms, and for it to be used as a screening tool in those at high risk of developing cancer.
As a rare 10 year pancreatic cancer survivor, I will be watching developments closely, but I feel buoyed by this news that there could soon be a non-invasive and inexpensive blood test to detect pancreatic cancer early and ultimately improve survival for patients.
On Wednesday 10th January, I drove up to Oxford at the request of Channel 5/ITN News to give my comments for the evening news bulletin on a memo leaked by the Head of Chemotherapy at the Churchill Hospital, Oxford to the Times newspaper.
In the memo, Dr Andrew Weaver blamed a 40 per cent shortage in specialist cancer nurses trained to administer chemotherapy medication as the reason why the Churchill Hospital would be considering delaying the start of chemotherapy treatments by up to four weeks and/or rationing treatment by reducing the number of cycles [of chemotherapy] patients receive.
While the Churchill Hospital denied that any current chemotherapy services have been affected by staff shortages, I firmly believe that this is a shot across the bow from senior clinicians to highlight the fact that teams are stretched almost to breaking point.
The UK has some of the lowest cancer survival rates in the developed world. Pancreatic cancer patients, who are already on the back foot because of delays in diagnosis, will be further disadvantaged if they have to delay starting chemotherapy treatment or their treatment is rationed. This will undoubtedly have an impact on life expectancy and possibly quality of life, as chemotherapy can also help palliate the symptoms of the disease, such as pain.
What we have to remember is that behind every statistic, there is a patient; a mother, father, brother, sister, aunt or uncle, all of whom are struggling to cope with a cancer diagnosis and do not need additional anguish over whether they will be able to receive the appropriate treatments in a timely manner. Treatments need to be started as soon as possible to help prolong life, relieve symptoms and for patients to spend more time with their families.
The Churchill Hospital example may well be the tip of the iceberg and one wonders whether similar conversations may be being had at other cancer units across the UK.
The Health Secretary Jeremy Hunt and the wider government needs to tackle this immediately before this becomes a national and more severe issue and before cancer patients die prematurely.
On March 7-8 we exhibited at the Health and Wellbeing at Work show at the NEC in Birmingham. This gave us an opportunity to discuss pancreatic cancer with Occupational Health (OH) professionals from organisations large and small from across the UK.
We stressed the lack of public awareness about pancreatic cancer (70% of the UK population does not know where their pancreas is) and that in the UK, 40% of patients are under the age of 69 and some therefore will be in the workplace.
We talked about our Pancreatic Cancer Aware campaign and its dedicated website and how some of those assets, including videos, can be used on their company intranets and in their internal health and wellbeing emails.
We talked about how, by utilising Pancreatic Cancer Action’s comprehensive awareness materials, we can try to improve early diagnosis by making the UK workforce more aware of the disease and its symptoms and risks.
We had an excellent response and have had a lot of requests for literature and for us to visit some of the organisations to talk to their staff. Most Occupational Health professionals told us that they have not ever had an awareness drive on pancreatic cancer and that they would be keen to do so in the future.
This for us is a fantastic opportunity to work with Occupational Health professionals to communicate our messages about pancreatic cancer to their teams and to staff within their organisations.
If you would like us to visit your company to talk about pancreatic cancer or provide your Occupational Health team with pancreatic cancer awareness materials, please get in touch.
A recent study by Cancer Research UK* has found that for all cancers, the number of cancer cases and deaths will increase by 2035 by 42% (cases) and 30% (deaths).
However, what we do see is the rate of incidence for all cancers combined falling in women by 0.11% and in men by 0.03% by 2035 and, for most cancers, the mortality rate is decreasing too. (The age standardised rates describe cancer incidence and mortality with reference to a standard population and accounts for such things as differences in age and composition of the population).
One of the cancers that is bucking that trend in terms of reduced rates of incidence is pancreatic cancer. Instead of seeing rates falling, the rate of incidence of the number of cases is predicted to be up by nearly 5% in women and nearly 7% in men between 2014 and 2035.
The rates of incidence for cancers such as bowel, bladder and lung are predicted to reduce significantly over the same period.
So what does this mean? Well the number of actual cases of pancreatic cancer (which is a different number than the rate at which they occur) is likely to top 15,000 by 2035 and the numbers of actual people dying is predicted to be over 13,000. See the tables below:
That’s a predicted increase of nearly three per cent per year in the number of cases and over two per cent per year for the numbers of people dying from pancreatic cancer.
With an increasing population size and an ageing population, it is not surprising to see that the number of people affected by cancer is increasing over time. What is concerning is that the rate of incidence and mortality for other cancers is predicted to decline by 2035 and in some cases significantly. One of the exceptions is pancreatic cancer.
And, while the rate of mortality (death) is influenced by the incidence (cases) rate, other factors will influence these numbers such as how successful the healthcare system is in diagnosing and treating the cancer in question.
We know that pancreatic cancer is diagnosed late, when it has already spread to other parts of the body. This, and the fact that we have few treatment options available to patients, means that we will only continue to see increasing death rates from pancreatic cancer to 2035 and beyond. This is unless we see noticeable improvements in diagnosis and treatment which will only happen when we get greater focus on and funding for the disease.
Oct 24th 2016
*All data from: Smittenaar, Petersen & Moitt (2016) Cancer incidence and mortality projections in the UK until 2035. Brit.Journal of Cancer 1-9 DOI:10.1038/bjc.2016.304
After nine years of managing to avoid it, it has happened to me. It has now been confirmed that I have Pancreatic Exocrine Insufficiency and I am awaiting an appointment with my specialist HPB dietitian to advise me on a prescription of the digestive enzyme drug CREON. This diagnosis is not something that is unusual for those of us who are/have been suffering pancreatic cancer, but what is unusual is that I have not been diagnosed with it before now.
Pancreatic Exocrine Insufficiency (or PEI for short) is where there has been a change in the flow and amount of pancreatic juice (which contains enzymes to break down foods such as fat, protein and carbohydrate). Without enough digestive enzymes, the food can pass through the digestive system without being properly broken down and absorbed.
In my case, they symptoms of this condition included more frequent and looser bowel movements and periods of sudden evacuation (rush to the loo time!), terrible bloating and sometimes debilitating stomach cramping, especially just after I had eaten, plus the odd bout of wind. Some people with PEI will lose weight, but not so in my case. Perhaps it is because my level of PEI is moderate: on the scale at 118.
The test I had was a poo test known as a faecal elastase test. The ranges of normal to moderately or severe insufficiency are below:
- More than 200 ug Elastase/g stool = Normal
- 100 to 200 ug Elastase/g stool = Moderate to slight exocrine pancreatic insufficiency
- Less than 100 ug Elastase/g stool = Severe exocrine pancreatic insufficiency
Now, many people in my position (who have had surgery to remove a pancreatic cancer tumour) will develop PEI from the outset. Others tend to find they either don’t get it at all or, like me, it creeps up on you over time. After my surgery, I was left with around 20% of the head of my pancreas and this has kept going like the clappers for years.
I had noticed the odd change in bowel habit about 18 months ago but, because these were infrequent and had no pattern, I just thought it may be something I was eating that didn’t agree with me. I had always (since my operation) had difficulty digesting red meat and had side effects from eating strong cheeses like Stilton, but removing these foods from my diet seemed to sort the problem. Until recently.
The last 3 months or so have been really trying as my symptoms took a noticeable turn for the worse. To say I have been struggling with day-to-day activities is an understatement. It has been difficult to concentrate and the fear that I may not get to a loo in time has been immense. My coping strategy has been to consume a lot of Imodium and to plan journeys expertly according to where facilities are.
What is interesting is that pancreatic insufficiency may be having an effect on my glycaemic control which could in part explain why, as an insulin dependent diabetic, my blood sugars have been difficult to control over the past year or so.
I am looking forward to starting on the digestive enzymes despite the fact it is yet another drug I have to take and that I will have to remember to take it with any meals and snacks I eat. It is likely that I will have to adopt this for the rest of my life – a small price to pay for surviving pancreatic cancer.
The 30th August 2007 was the day I was diagnosed with pancreatic cancer. A disease I hadn’t ever heard of and, at the time, I had no real understanding of what I was about to endure. I had no idea that the survival statistics were so poor and that I was then facing only a 3% chance of surviving beyond five years.
But, survive I have, and more years than many others who have faced the same diagnosis. That’s because I was diagnosed in time for surgery to be possible. My surgery was a distal pancreatectomy and splenectomy where I lost 80% of my pancreas and all of my spleen. Of the two main surgical procedures, mine was the lesser but it still took five hours to perform and several weeks to recover from. I followed this with six months of chemotherapy including two drugs: gemcitabine and cisplatin then a further 5 weeks of chemo-radiotherapy.
It was nearly a year’s worth of treatment: weekly appointments with the oncologist, then daily appointments at the radiotherapy centre. I was becoming used to a kind of institutionalised lifestyle and the support of my medical team along the way.
Then it all stopped and I began to feel the loss of that support and framework to my life. It was a good thing to rid myself of so many hospital appointments but nevertheless I felt a kind of emptiness which was compounded by an overwhelming sense of what had just happened to me. I suppose had I been a soldier back from Afghanistan, I may have been labelled with Post Traumatic Stress Disorder – something I can really relate to.
However, with the strength that my family and friends have given me, I have been able to cope (more or less) with the impact of the pancreatic cancer diagnosis and the resulting survivor’s guilt and was helped in a major way through my founding of and working at Pancreatic Cancer Action.
My work at the charity is a daily reminder that life isn’t all about me – there are many touched by this disease who are far worse off than I am and it is my life’s work now to try to ensure many more are diagnosed sooner so they too can have the same outcome as me.
I now, more or less, live a normal life, but there are some things that have changed since my surgery. I am insulin dependent diabetic – type 3 – a type I had never heard of (and some doctors are unaware of this type too!). I need to be on permanent antibiotics now I don’t have a spleen, and I can suffer the effects in wintertime of the peripheral neuropathy which is a hangover from my chemotherapy treatment.
I am currently being investigated for new changes to bowel habit and being fast tracked (this time!) for urgent referrals for tests. It is a bittersweet irony that on the anniversary of surviving nine years following pancreatic cancer, I am awaiting the results of a CT scan to see if anything nasty has returned. The fear of this is as real as it has been throughout the past nine years and I guess it is something that will never leave me. Hopefully it will only mean I will now have to take CREON with meals to help me digest food properly – something I have managed to avoid so far!
But I am lucky, I have been here to see my two boys grow up into fine young men, enjoy lots of family holidays to lovely places including Australia, Egypt and Africa, go on walks in the woods with my dogs and to still have the support, love and company of my true best friend, my husband Phil.
As I enter the 10th year of my diagnosis, there is a lot to reflect on and a lot to be thankful for. Next August will mark my 10th anniversary and, statistically, only 1% of us diagnosed with pancreatic cancer ever live that long.
When you’re at the beginning of your ‘journey’ with pancreatic cancer, it almost seems inconceivable that you will hit those milestones and become one of those slim statistics. My husband’s positive attitude and mantra that I was a statistic of one: my disease, my treatments, my outcome. This helped me mentally get through and to believe that I could be one of the 3% (to survive 5 years) and now to believe I will make up one of the 1% to live for 10 and more years. Here’s hoping!
30th August 2016
I joined the first formal Board meeting for Pancreatic Cancer Europe (since its new legal status as a not-for profit registered in Brussels) which was held in Liverpool in early July.
I have been a founder member of Pancreatic Cancer Europe (PCE) which is a multi-stakeholder platform made up of clinicians, patient groups, researchers, industry, journalists and EU policy makers. Our aim is to improve diagnosis and care for patients across the EU and to ensure that there are no inequalities in that care no matter where patients reside.
There are four main work streams: Awareness and Diagnosis, Registries, National Support and Research and I am proud to be the lead for the Awareness work and being able to bring some of the knowledge and experience of my work with Pancreatic Cancer Action to PCE.
Funded by pharmaceutical companies Celgene and Shire, we have been in operation since November 2014 and have already produced several documents and awareness materials including a micro site, symptoms posters, 10 key facts and GP leaflets on diagnosing pancreatic cancer.
Thankfully, PCE covers a geographical Europe and not a political one so, being from the UK, my role as a Board member is currently unaffected by the Brexit decision.
Having a legal entity for the organisation is an important step for PCE as it gives it a formal structure and increased credibility and legitimacy within the EU. This foundation will underpin the four work streams (Awareness and Diagnosis, Registries, National Support and Research) and will enable us to apply for funding from a wider group of sponsors than present. It will also enable funding from the EU itself for future projects – all with the aim of improving outcomes for pancreatic cancer patients across the EU and the UK!
For more information on Pancreatic Cancer Europe, visit http://www.pancreaticcancereurope.eu
We have seen a lot in the press recently about the advances in immunotherapy for many cancers and, in the case of melanoma, with extraordinary results.
We’ve not as yet seen this happen for pancreatic cancer which, so far, has proven difficult to treat with either conventional chemotherapy and/or novel immunotherapy. Some trials of immunotherapy (which targets the body’s immune system to fight the cancer) have failed and, it is believed one of the reasons for this is that pancreatic cancer tumours are cunning in the way they are able to manipulate the immune system to help their own progression.
Our immune system contains many different types of cell, whose job it is to detect and destroy dangerous invaders such as viruses and bacteria in order to prevent serious diseases. What is important is for these cells to also be able to recognise the good bugs, such as healthy bacteria in our gut, which are important for maintaining health.
A very important cell in our immune system is the T-cell (or T lymphocytes) and these cells patrol our system, looking out for anything that could be harmful and, when encountering such, will decide whether to attack.
Cancers actually contain lots of T-cells, but, for some reason they seem not to recognise that the cancer is a threat. Scientists have discovered that T-cells in cancers actually contain a molecule that tells them not to act. Many immunotherapies have focussed on what they call this ‘molecular handshake’ to allow the T-cells to do their job and kill the tumour cells.
However, for pancreatic cancer, the tumours are encased in a thick layer of proteins and cells which act as a barrier to stop the immunotherapy dugs from getting to the tumour and destroying it. This is why immunotherapy trials for pancreatic cancer have, so far, shown disappointing results.
Now a new study by researchers at the Beatson Institute in Glasgow and published in the journal Cancer Cell1 has found in mouse models and human studies that pancreatic cancer tumours contain a protein (called CXCR2) which protects the tumour by controlling the immune system and preventing it from acting. The scientists have found a way to block the CXCR2 protein using a drug: AZD5069 which has previously been studied in COPD, asthma and is being looked at for head and neck cancers.
By blocking CXCR2, scientists found that there was an initial ‘rush’ of T-cells into the tumour and that this is what can prime the tumours making them more sensitive to chemotherapy drugs as well as immunotherapy agents. Ultimately it is hoped that this will lead to tumour cell death and reduction of the tumour.
While more studies are needed, it now looks like there could be real hope that we can find an effective immunotherapy agent for pancreatic cancer – ultimately unleashing a new weapon against the disease, which is very much needed.
This week is #NationalDiabetesWeek and social media has been full of interesting facts and hints and tips on how to manage either Type 1 or Type 2 diabetes. What I have noticed though is that no-one has, thus far, mentioned Type 3 diabetes. This hasn’t come as a surprise.
A year before I was diagnosed with operable pancreatic cancer, I was told that I may have Type 2 diabetes. However, I wasn’t overweight, nor did I have a family history of the disease. We now know that it was probably the cancer causing the blood sugar level elevations and this link between new-onset diabetes without weight gain (which can occur 1-3 years before a pancreatic cancer diagnosis) is something that we at Pancreatic Cancer Action are investigating in our research programmes.
This I had never heard of before and so went about trying to find out more. I looked at some informed websites including Diabetes UK and found nothing. Not even a mention. And not all of the medical profession has heard of this type of diabetes either – unless they are specialists in this field.
Never being one to give up, I kept on researching. I have since found out that, of all diabetes cases Type 3c makes up about 8%1 – not a lot, but not insignificant either.
Type 3c Diabetes is usually characterised by the fact that the patient has had all or part of their pancreas resected due to cancer or cystic lesions or other diseases of the pancreas such as pancreatitis and cystic fybrosis.2
Patients often have Pancreatic Exocrine Insufficiency (malabsorption) and are on Pancreatic Enzyme Therapy (PERT) to help them get their nutrients from food.
Initially, my diabetes was considered a ‘side-show’ to the pancreatic cancer and rightly so. Treatment for it started with a combination of gliclazide medication and diet, but over the years my glucose control has declined. Gradually an insulin regime was introduced and, with increasing lack of glucose control (despite being very strict with my diet) the gliclazide has been removed, metformin added (slow release) daily, with insulin injections with meals and snacks and at bedtime.
My diabetes is difficult to manage – I am strict with my carb intake (to the point of being obsessive) and I have taken advantage of new technology in the form of a Freestyle Libre monitor system to help me regularly check my glucose levels without the need to prick my fingers. This is at great expense to me as this system is not funded by the NHS, and each monitor (which lasts 2 weeks) costs about £50.
What is difficult for me is that there is little or no information for patients on how to manage Type 3c diabetes. Do we follow a regime for Type 2 patients or Type 1? Not knowing makes me feel like all of this is a bit of trial and error. I’m lucky to be very closely monitored by my specialists who are helpful in finding strategies I can adopt to get my sugar levels under better control.
I am also lucky that, following my pancreatic cancer diagnosis nearly 9 years ago, my primary health concern is now my diabetes control. And, while it is a nuisance and an intrusion into every-day living, this is something I can live with because I am living many years after being diagnosed with pancreatic cancer – something that happens for only the very few.
Founder and Chief Executive
Pancreatic Cancer Action
June 15th 2016
- From Cui Y & Andersen DK 2011 Pancreatogenic diabetes: special considerations for management. Pancreatology 11 279–294. Copyright 2011 S Karger AG. Data from Hardt et al. (2008). ↩
- From Cui Y & Andersen DK 2011 Pancreatogenic diabetes: special considerations for management. Pancreatology 11 279–294. Copyright 2011 S Karger AG. Data from Hardt et al. (2008). ↩
It has been an amazingly inspirational couple of days at the very first World Pancreatic Cancer Coalition (WPCC) meeting in Orlando, USA. Over 54 delegates from 24 countries attended and I had the pleasure of meeting some people who I had only previously known through social media or conference call and email exchanges.
There were many more who I was meeting for the very first time – representatives from organisations big and small but, regardless of size, were there for one common purpose: to change the landscape for pancreatic cancer on a global level.
The WPCC has been in development for just under a year under the stewardship of the Steering Committee comprising of Chair, Julie Fleshman, CEO and President of the Pancreatic Cancer Action Network in the USA, myself as co-Vice Chair alongside Alex Ford and Barbara Kenner from the Barbara Kenner Family Research Fund (USA). In this short time we have managed to found the WPCC, set its constitution, develop the branding, develop and launch the website http://www.worldpancreaticcancercoalition.org as well as bring together the very first WPCC meeting. Julie Fleshman had assigned some of her team to work on the logistics of this event – and thanks to her and her team, everything worked like clockwork!
One of the key components of the meeting was to have a facilitated brainstorm session to carve out the future priorities and plans for WPCC. This was a very energetic session and there are many key initiatives both for the short and for the longer term that we have taken on board and will publicise once the priorities have been finalised.
As Chair of World Pancreatic Cancer Day, I along with Ruth Fitzgibbons from our creative agency, The Richards Group, presented to WPCC the plans for the Day in 2016 (17th November 2016).
Historically, the World Pancreatic Cancer Day (WPCD) was an initiative of its own and it is from that has provided the springboard for the WPCC. Now, WPCD is one of the key initiatives of the WPCC.
More will be revealed about WPCD to the wider world later, but suffice it to say, the WPCC members were very engaged and excited by the concept we presented and we hope that WPCD on 17th November will be the best EVER!
The WPCC Steering group outlined the governance structure of the Coalition and encouraged members to apply for places on both the main WPCC and WPCD steering committees.
What went down extremely well were the presentations by Coalition members about their activities in their countries. There were many inspiring presentations about initiatives members have developed and run to raise awareness of pancreatic cancer. A lot of learning points and some novel ideas were presented.
We also had presentations on social media strategy and PR relations skills. This was especially beneficial to smaller organisations in the meeting who do not as yet maximise social media on a daily basis.
What we all found very interesting were the scientific presentations by Dr Anirban Maitra and Prof Margaret Tempero (she’s one of PCA’s Scientific Advisory Committee Members).
Both presented good overviews of the research landscape in presentations that weren’t too technical in nature and were easily understood by all.
The key thing I took away from this inaugural WPCC meeting is that there are a lot of people out there across the globe doing amazing work in the pancreatic cancer field. And, while that work may be diverse and different, what we all have in common is a fierce drive and passion to effect change for pancreatic cancer worldwide.
Now we have come together, we will be a collective force to be reckoned with. So, watch this space and if you want to help us, please get behind World Pancreatic Cancer Day on 17th November – it’s going to be a good one!