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.

Today, Sally is a valued and active member of our Patient and Public Involvement (PPI) Group who advises on our Programme strategy and research development. As a passionate PPI advocate, she has contributed to the design and review of clinical trial protocols - including CRISTAL-APC, which is recently launched at the Cambridge University Hospitals NHS Foundation Trust. She is also actively engaged in several events to raise awareness and funds for pancreatic cancer research. In this interview, Sally shares her personal journey through diagnosis and treatment, and reflects on why she believes the patient voice is essential in shaping the future of cancer research and care.

Journey through diagnosis and treatment

My first symptom was dark urine, and a sudden yellowing of my skin over the next few days. The doctor immediately took a blood test and luckily, ten days after my first symptom, I was actually seeing the hepatologist in the hospital. And that was when I was told that I had a mass at the base of my bile duct. “You need tests. We need to get that as soon as possible”, the doctor said.

Within a week, I had an emergency endoscopy with biopsies taken and then they confirmed that it was pancreatic ductal adenocarcinoma. By the time I got to see surgeons, it was about a month post-diagnosis. And they were only able to give me a date six weeks hence for my surgery. For me, it felt as too far away, both psychologically and physically because, obviously, as anybody who's got pancreatic cancer knows, it feels you've got a ticking time bomb inside you. Fortunately, with my GP’s help, I was admitted slightly earlier in another hospital for a pylorus-preserving pancreaticoduodenectomy - a partial Whipple procedure.

Ten months after the adjuvant chemotherapy post-op, I returned to my work as a physiotherapist. Just when we thought things were going better than anticipated, I started getting blurred vision. It turned out that my journey was far from over. My cancer returned, this time with peritoneal metastases alongside my new diagnosis of Type 3c diabetes, which accounted for the blurred vision.

Faced with the devastating news with no treatment options, I was offered an experimental chemotherapy regimen known as FOLFIRINOX. After long thought, I chose to undergo the hard-going treatment as that was the only option. I ended up being admitted to the hospital after my first treatment because of the effect it had on me, because of nausea or vomiting, and the fact that it was going to affect my diabetes. But ultimately, I managed to complete the whole course of treatment. Acknowledging that the treatment was only going to give me up to two years of extra survival, I took early retirement and decided to embrace each day positively with renewed purpose. Fourteen years later I’m still here - despite having had a lung nodule removed last year, which turned out to be another pancreatic secondary, 13 years after my original diagnosis. Thankfully, no further treatment was needed.

Facing challenges and finding support

There are various significant challenges along my journey, both physically and emotionally. It was obviously a huge shock when to receive a diagnosis like this. What was even harder was that not only did I have to process the whole thing myself, but also to absorb other people's shock when they heard the news.

For my husband, who worked in biomedical science, it was very difficult to stay positive. Working alongside colleagues involved in pancreatic cancer research, he was under no illusions at all about what could happen. Thus, I felt that I had to be as positive as I could be for him as well as for me. I was also concerned about our son, who was away studying at university. Back then, it was impossible to get them talking about their emotions. Thankfully, we had amazing supportive networks: my GP helped arranged a MacMillan support nurse for us; our church and the whole Christian community were there to help; and a Facebook group run by patients for patients was also a lifeline.

I think that's what patients have to bring - the lived experience to the PPI membership. By working alongside the clinicians and researchers, I hope my story can help ease the way for others.

Because of our own backgrounds, we had all the basic information that we needed about pancreatic cancer and the surgery. However, we still struggled when it came to making logical decisions on treatments. Overwhelmed at that time, we just wanted someone to say, "This is what I would recommend for you." In addition, I also experienced some gaps in patient support, from inconsistent prescriptions of digestive enzymes like CREON® to confusing messages about returning to work while on chemotherapy. Nevertheless, I think that's what patients have to bring - the lived experience to the PPI membership. By working alongside the clinicians and researchers, I hope my story can help ease the way for others.

My advice to new patients and carers is "Don’t read too much, particularly on the internet!” The advice and the information on the internet are unfiltered, which may not be pertinent to your case at all.

Advice for new patients and carers

Going through all these challenges, my advice to new patients and carers is "Don’t read too much, particularly on the internet!” The advice and the information on the internet are unfiltered, which may not be pertinent to your case at all. Instead, seek advice from all the support services such as your doctors, nurses, and Pancreatic Cancer UK. Be open, stay positive and, most importantly, take each day as a gift because you never know how it is going to work out for you. My doctors still don’t know why I’m alive 14 years later. But I am. And there are others like me.

Be open, stay positive and, most importantly, take each day as a gift because you never know how it is going to work out for you.