Sue Applegarth's Story

In January 2023, my life took an unexpected turn when I was diagnosed with acinar cell carcinoma of the pancreas. This rare and slow growing form of pancreatic cancer affects only a small percentage of pancreatic cancer patients. Looking back, I realise my journey began well before then, with some subtle signs – the odd digestive issue, occasional (but to me explainable) back ache and tightness around my diaphragm that I had just brushed off.

I remember being on a family holiday in the Lakes. It was September 2019, and I was very sick one evening after a glass of wine and an hour in a hot tub, I blamed the hot tub! A month or so later, I had continuous indigestion type discomfort for a few days and found it difficult to stand up straight. Luckily for me, I was persuaded to go to an appointment with a private GP to check it out - not something i would normally have even thought of for what I thought was just indigestion.

As I felt a shooting pain from my stomach through my back when I was examined, the GP advised me to go straight to A&E. The medical team there took blood tests and i was kept in for 24 hours after being diagnosed with diagnosed acute pancreatitis. I was then sent for tests to see what might have triggered it. The biopsy showed no cancer, but did show I had gallstones, so I was scheduled to have my gallbladder removed in December 2019. The pain then disappeared, and I went back to life as normal

Around 10 months later, in September 2020, the pain was back. Worried, I went to A&E where I was admitted again for pancreatitis and went for more tests. My surgeon thought it could be a tiny bit of debris left over from my previous operation as they had removed 3 large gallstones, as the endoscopy and colonoscopy were both normal. But they wanted to review in 12 months.

Another year or so went by, where life remained largely normal. I still had discomfort in my middle back, which I thought was probably from working on my laptop on the train and I still had a tightness round my diaphragm. I also had three strange experiences where I became violently ill, always after having been out for lunch with friends, which I put down to my body no longer being able to tolerate rich food, without a gallbladder. Looking back, I now realise these were all symptoms of pancreatic cancer.

In November 2022, as my symptoms persisted, I went back to A&E and was sent for a further CT scan. This revealed a concerning bulge in my pancreatic duct, and I was then sent for an endoscopy with biopsy and a PET scan, which revealed I had pancreatic cancer.

The diagnosis was a shock, especially after I had already had surgery in that area, but I was determined to face it head-on and stay positive throughout. My surgeon and the

oncology team talked me through the options for treatment and recommended a plan that started with chemotherapy followed by surgery to remove my pancreas, rather than the other way round. I also felt this was the best approach for me. The idea of chemotherapy first, was to stop the cancer from growing or spreading to other organs, weaken the tumour, shrink it away from the major blood vessel it was close or attached to, and improve the ‘margin’, all of which would improve the chances of them being able to operate successfully. There was also a plan B if they couldn’t operate.

My surgeon explained that the operation would be life changing – no pancreas would mean I would be diabetic and insulin dependent. My view then was that the word ‘life’ was in there and I could control and manage the diabetes and still enjoy life: I couldn’t control the cancer.

The oncologist explained there were still only two types of chemotherapy available for pancreatic cancer – one was less aggressive than the other (in terms of potential side effects) and that we’d start with the least aggressive one – two weeks on and two weeks off over 3 months and then retest to see what effect it was having on the tumour.

Three months later, I got some good news – the cancer had not spread, and the tumour had not grown but it hadn’t shrunk. So, as discussed, we switched to the more aggressive version for the next 3 months - once a week for three weeks, followed by a week off.

I had 15 rounds of chemotherapy in total over a six-month period. And yes, it was tough at times, but not as bad as I thought. I was determined to stay positive and enjoy every day. I continued walking my dogs twice a day throughout to keep my spirits up (with the occasional day off because the cold affected my breathing and made my fingers and toes painful or it was raining heavily because catching a cold might delay my treatment). I looked for the funny side of things (chemo tummy in particular) because for me, laughter has always been a great healer. And I continued to work (albeit part-time and from home, with reduced responsibilities) because that kept me grounded. And my husband and I still argued over who loaded and unloaded the dishwasher, so life was normal!

After six months and 15 rounds of chemotherapy, we got good news - the tumour had shrunk sufficiently for me to be operated on.

I had my last round of chemotherapy on 21 July 2023, and on September 5th, 2023, I went in for surgery. The decision to remove my pancreas and spleen wasn't easy. We considered the risk of recurrence, peace of mind and how having the operation would affect my quality of life. In the end, we decided it was the best course of action, not least because if the cancer were to come back, I never wanted to say ‘if only’.

The surgery was successful, and I was relieved when the biopsy results 10 days later came back clear. I was also very fortunate in that when operating the surgeon saw pre-cancerous cells in my stomach area and removed them too. I was out of the hospital in just 8 days, much quicker than the expected 20. The follow-up scans since then have showed positive results, and I remain cancer-free.

Recovery from my operation has been a journey in itself, as I adapt to life without a pancreas and living with Type 3c diabetes. I now take enzymes with every meal and snack which break down the food I eat, and I am insulin dependent. I am therefore careful with my diet and work hard to actively manage my blood sugar level, so I stay healthy. It's been a steep learning curve, harder than I thought when I chose to have surgery, but I am so glad I made that decision. I am managing really well, and I know just how lucky I am to be fit, healthy and living life to the full as a newly retired pensioner.

As I write this, I'm still in recovery (an operation in October 2024 to fix a hernia that developed post cancer surgery set me back some) building up my strength and my immune system. I take low dose antibiotics every day to offer a level of protection against bacterial infections, which seems to have worked well.

My next scan is scheduled for later this month, and I'm hopeful for good news again. Strangely, I am not filled with fear, but with hope and gratitude. This experience has changed my life in many ways, showing me the preciousness of each day and the incredible resilience of the human spirit. I'm grateful for every day, and I'm determined to make the most of my second chance.

To anyone facing a similar diagnosis, I want you to know that there is hope. Medical advancements are being made every day, and with determination and the right support, you can overcome incredible odds. My story is proof that even in our darkest moments, there's always a possibility for light.