Patient Perspective Series: Real Stories to Inform and Inspire

Like many people, I knew little about the pancreas and even less about pancreatic cancer. The disbelief and devastation caused by a diagnosis of this disease can never be overstated; you quickly examine the nature of, and statistics around, this cancer only to find that things probably couldn’t be worse. As I will explain, although still battling with symptoms, I have managed to come through some very dark moments to a position of relative calm and, statistically unlikely, survival. My every waking hour is focused on one or more aspects of this disease as I try to manage my life with the help of my family and the healthcare professionals involved.

My symptoms began, as many cancer journeys do, with problems that can sometimes be diagnosed as something else. I had suffered with irritable bowel syndrome (IBS) for some years, and this seemed to be a possible cause of my discomfort at the time. As it happened, I was due to have an ultrasound scan for something else and it was at this point that a shadow was detected on my pancreas. A biopsy followed and the presence of a cancerous tumour was confirmed. At this moment everything in your life (and the lives of those around you) changes for ever.

I was immediately offered surgery; I know that this option is not available to all people with this diagnosis, but my general fitness and resolve allowed me to grasp it firmly with both hands. Post operatively my pain was managed effectively and, after a three week stay in hospital, I was discharged home after what was described as successful surgery. We were told that not all associated lymph nodes had been removed and we understood this.

There have been many periods during this long journey when my family and I have felt isolated and frightened. These are not feelings that fit neatly into the clinical care model and our first ‘push back’ following surgery was upon referral to the oncology team where we were told immediately that the cancer would probably come back which, naturally enough, deflated us. But worse was to come when chemotherapy, which was described as a ‘mop up’ to clear any existing cancer cells, was described in the information leaflet we were given by the nurse as palliative. Most people will know what that word means and what impact it can have on your state of mind. Our first and then second engagements with oncology were, sadly, rather negative experiences.

Having now lived through many stages of my cancer, having researched pancreatic cancer carefully, and having learnt about the experience of others with the same diagnosis (and prognosis) one gets a sense that many (not all) health professionals see this cancer through a lens of inevitability as far as outcomes are concerned. It is true that the statistics around pancreatic cancer support this perspective, but this should not necessarily pervade those early discussions with patients and families as much as it seems to. And we know that a number of those diagnosed beat the initial prognosis by several years, with some surviving for five and ten years. This is not to deny the brutality of this disease, but those early discussions can forge an imprint on what happens next and, particularly, on the patient’s ability to manage their ongoing health effectively. Anecdotally, there are examples of patients with strong determination and clear goals who have outlived the prognosis to achieve amazing things. A positive attitude in those early days can undoubtedly reinforce the natural resolve of some patients and families. Sadly, we know that this is not always possible.

We also found that there was quite often a difference of approach and opinion between the various health professionals we saw, as well as an inconsistent input from the clinical nurse specialists (CNSs) except for surgery, where the support was excellent.

Chemotherapy treatment continued, often erratically for understandable reasons. There had been some shadows/nodules on my lungs for a number of years prior to my diagnosis of pancreatic cancer, which were not thought to be of any concern. However, a new, routine scan discovered shadows on my lungs. There then followed a truly distressing and depressing period (partly over Christmas) when communication with us over the status of these shadows (i.e. benign or cancerous) was exceptionally poor and distressing. Following this period, we believe that important lessons were learnt from the episode as far as internal and patient level messaging are concerned, which is a good thing.

After this regrettable part of our journey had come to a close things began to improve – our confidence in the NHS had been severely shattered, but our new consultant (we had seen a number up to this point) was lovely and was able to work closely with us, reassure us, and consider possible options and plans for the near future. These plans were largely positive and gave us hope - something that had been denied us following our initial visits to oncology where the poor prognosis and ‘palliative approach’ had left us alone, devastated and at rock bottom.

Things stabilised but the size of the nodules on my lungs slowly began to increase; some were cavitating, which we understand is unusual when there is a diagnosis of pancreatic cancer. The nodules were too small at the time for a close and definitive examination (i.e. via a biopsy) but my consultant invited me to undergo some further tests. These new tests discovered that I have a rare mutation which, taken with other factors, meant that I might be eligible for participation in a clinical trial. Various ups and downs ensued when tumour markers went up, but the size of the nodules reduced. I now believe that my rare mutation pattern and the nodules not cavitating have given me a much stronger chance of managing things than might otherwise have been the case.

I continued with treatment and was offered a place on an exciting new trial, which I immediately took up. My motivation for so doing was twofold; clearly anything that might help with current and possible future risks around my cancer had to be good and, secondly, I had learnt over the length of my journey, thus far, how important research was, potentially to other patients, and definitely to future generations. At the time of writing, I will be on the trial until spring 2025 but may have the chance to continue with this medication if it continues to prove effective. The research/trials environment is warm and positive and gives a ‘team feel’ to the patient experience.

My motivation for so doing was twofold; clearly anything that might help with current and possible future risks around my cancer had to be good and, secondly, I had learnt over the length of my journey, thus far, how important research was, potentially to other patients, and definitely to future generations.

We have had the benefit of help and support from several charitable organisations during the journey; one specialist pancreatic cancer support charity advised us very early on to “make sure you have control of what is happening and what is planned”. We have followed this advice (mostly successfully) by good preparation ahead of clinic consultations, taking notes, and challenging (politely and respectfully) where this has been necessary. We are sure that this determined and organised approach has been helpful, and we are so very grateful for the positive response from our healthcare professionals, albeit after a number of extremely difficult periods. Why the empathy and positivity that we now enjoy were not, even in part, deployed to begin with is a sadness. Both our clinical and holistic pathways could have been better managed.

One specialist pancreatic cancer support charity advised us very early on to “make sure you have control of what is happening and what is planned”.

My favourite saying is, ‘never give up hope’, which covers a lot of things. I am a survivor in the context of pancreatic cancer which I put down, in more or less equal measure, to luck, positive clinical thinking and options, and my resilience and determination – so far, a successful mix!

I am a survivor in the context of pancreatic cancer which I put down, in more or less equal measure, to luck, positive clinical thinking and options, and my resilience and determination – so far, a successful mix!