Why early diagnosis is so important for pancreatic cancer
Charles' story
In 2018, Charles was diagnosed with type 2 diabetes, shortly after he began to experience sudden and unexplained weight loss.
Charles was referred for some tests, including an MRI and CT scan, that showed that there was damage to his pancreatic duct. This raised alarm bells for Charles, whose mother died of pancreatic cancer. Charles was referred for some additional tests and following a blood test and an endoscopic biopsy, he was diagnosed with pancreatic cancer.
"I want more people to be aware of the early warning signs, especially for pancreatic cancer," Charles says, reflecting on his own experience.
"Pancreatic cancer is particularly aggressive, so those early warning signs are critical. If you become suddenly jaundiced or suddenly start losing weight, if you become diabetic, if you’ve got family history, or you have a pain just below the ribs and/or in the mid or lower back, you need to act. You need to go and see your doctor."
"I was diagnosed early as a result of sudden pancreatitis and weight loss. I was immediately put on Pancreatic Cancer Replacement Therapy (PERT) to be able to start putting weight on again. This was crucial as it meant I was well enough to have surgery. The timing was crucial to saving my life."
Access to the latest treatment therapies
After several procedures, including robotic assisted Whipple surgery, the next stage of Charles’ treatment plan was chemotherapy. Knowing that this would be an intense period of treatment, Charles looked for a consultant who he felt he could trust and build a long-term relationship with. His search brought him to Leaders in Oncology Care, part of HCA Healthcare UK, initially under the care of Dr Maurice Slevin, and when he retired, Dr Amen Sibtain, who has overseen his care ever since.
Charles responded well to his initial chemotherapy treatment and his cancer went into remission for 18 months.
"I had chemotherapy every two weeks for six months. Although I found the treatment really challenging, I developed a great relationship with Dr Sibtain and the team. Having such regular treatment, you get to know your team really well, you develop a personal relationship, and I was really impressed by the care they provided me."
The team at LOC continued to monitor Charles and six months later he had to have three tumours in his right lung removed and a lymph node next to his aorta treated with radiotherapy. After a period of remission, in May 2022 Charles’ consultant found two new tumours on his peritoneum (stomach lining). After three months of chemotherapy, Dr Sibtain changed to a different, not widely available, chemotherapy treatment, to target Charles’ cancer.
"From August 2022 until January 2023 I had chemo every two weeks. It left me exhausted but I wanted to carry on. It was the right decision for me, but everyone’s decision around treatment is their own when it comes to cancer. For me it was either control the cancer, or let the cancer control me. And I couldn’t let it control me."
Personalised support
As part of Charles’ personalised treatment plan he has been able to access support with the emotional and physical challenges of having cancer treatment.
"Leaders in Oncology Care offer holistic support, which I think makes a difference. I’ve seen a dietitian who adjusted minerals and vitamins I needed, such as magnesium. I’ve had reflexology and acupuncture to try and alleviate the symptoms of nerve damage caused by the chemotherapy treatment and there’s been a lot of support for pain. They have a 24-hour number you can call, so you know you can always get in touch with them, especially in an emergency. I had to use it a few times and the support and action was immediate."
Charles’s wife Jackie has supported him throughout his treatment and when his course of chemotherapy finished in January 2023, Charles felt he needed time to let his body rest. He and Jackie took some time out and went to the Caribbean. After such intense treatment, Charles enjoyed just feeling the sun and the breeze on his face and the sand between his toes.
Charles and Jackie also made the decision to adopt a dog, a Wirehaired Vizsla called Tilly.
"We made the decision to adopt a dog and it’s been great for us. We have to walk her for 2-3 hours a day, which keeps me active, and the unconditional love from Tilly helped with stress relief and kept me calm and happy."
Passionate about making a change
Charles is passionate about making a change for other people with pancreatic cancer. As well as wanting to raise awareness of the 7 key warning signs, Charles is also working with Pancreatic Cancer UK to try to improve the five-year survival rate, which is currently 7.5%.
"You start talking to people – other people with cancer, the friends and families you meet, the clinicians. I’m part of several WhatsApp groups and we all know pancreatic cancer is one of the most aggressive cancers. It spreads extremely quickly. Early diagnosis is vital, so it’s important we raise as much awareness of symptoms as possible. I’m a Patient Representative for the Pancreatic Cancer UK charity, I’ve joined patient support groups and have been involved in marketing, media and research. I am an active patient advocate – I want to help other people so that they have a better chance of survival."
Since his diagnosis Charles has thrown himself into understanding as much about pancreatic cancer as he can and has been proactively involved in working with Pancreatic Cancer UK as a Patient Lay reviewer on their Scientific Advisory Board. One of his many achievements was being part of a team who worked as a co-applicant for a breath test that could help diagnose pancreatic cancer earlier, and he has also helped to secure funding for ongoing research.
In addition to his work with the charity, Charles’s employer Fugro and their employees have also completed a number of fundraising challenges through the company’s UK offices. They are continuing their efforts by signing up to complete a skydive later this year.
"I’m a glass half full kind of person. I come from a scientific background so I’m fascinated by all the research and technical details - I like to understand my cancer better because it gives me control over what I’m going through and informs my decision making. I am determined to help drive awareness and make a difference for other people in a similar situation to me."
"Going through any cancer treatment is difficult and I know how difficult pancreatic cancer treatment can be. Yes, you have your bad days, but you also have good days, so it’s nice to have things to look forward to on the good days. Do the things you’ve always wanted to do: walks, holidays, socialising or special things that maybe you haven’t got round to doing. In my case, I wanted to treat myself to something really special after so many chemo cycles, so last September I actually flew a WW2 Spitfire which was a lifelong dream."
For more information on Charles’ cancer experience and his fundraising for Pancreatic Cancer Research UK here: https://www.justgiving.com/page/team-fugro-charlesbigjump
7 key warning signs of pancreatic cancer
- Your back or tummy hurts
Pain in your mid-back or tummy could be an early warning sign of pancreatic cancer. It could be caused by a tumour pushing against nerves or organs near the pancreas, or a blockage in your digestive tract.
- You feel bloated
Pancreatic cancer can affect your digestive system, which can cause excess gas or fluid build-up which leads to bloating.
- You’re having digestive problems
Indigestion, losing your appetite or feeling nauseous can all be warning signs of pancreatic cancer. This is because a tumour may be blocking or slowing down the normal digestion process, or it could be affecting your ability to digest your food and absorb its nutrients.
- You’re experiencing unexplained weight loss
Unexplained weight loss can be a sign of cancer. This is because cancer changes the way your body uses calories and proteins; you may burn more calories, it can cause muscle to break down and can also reduce your appetite.
- Your eyes and skin look yellow (Jaundice)
You may notice that your skin or the whites of your eyes look yellow, which is referred to as jaundice. Pancreatic cancer can cause jaundice if a tumour blocks bile flowing from your gallbladder to your small intestine. Jaundice can also cause itchy skin, dark urine or light or clay-coloured stools.
- Changes in your stools
Pancreatic cancer can cause changes to your stools. It can cause diarrhoea due to changes in pancreatic enzymes and/or constipation as a result of a slower digestive system. You may also notice changes to the colour or consistency of your stools.
- You’ve recently been diagnosed with diabetes or your well managed diabetes is changing
Sudden onset type 2 diabetes can be an early symptom of pancreatic cancer, especially if you do not have a family history of diabetes or if you have been experiencing unexplained weight loss. Similarly, if you have well managed diabetes and experience a sudden spike in blood sugar levels this can be a sign of pancreatic cancer.
These symptoms can be caused by a number of other health conditions, but if you are experiencing one or more of these symptoms it’s important to speak to your doctor so that they can rule out pancreatic cancer.