FORMER BANK WORKER WHO SURVIVED PANCREATIC CANCER IS PAYING IT FORWARD — BY SUPPORTING CANCER PATIENTS THROUGH COVID

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Above: Pat in the West Suffolk Macmillan Centre, where she supports patients as part of a team

· A Bury St Edmunds resident who survived pancreatic cancer has returned to the Macmillan Cancer Centre that supported her — as an employee

· Pat Kozaryn, who had part of her pancreas and 28 lymph nodes removed, credits a Macmillan course at West Suffolk Hospital with transforming her outlook

· Every November, there is a nationwide push to raise awareness of pancreatic cancer, which is found in around 9,600 people in the UK each year

If someone had told Pat Kozaryn five years ago that she would soon retire from a career in banking — after a lifetime of working in financial services — and find a new vocation supporting people with cancer, she would have laughed.

And yet earlier this year, Pat, began a new position as a Macmillan Survivorship Coordinator at the Macmillan Centre in West Suffolk Hospital, where she helps people at any stage of cancer to access the support and information they need to live well.

On paper it might not look like the most linear career trajectory, but Pat’s sudden change of course becomes less mysterious with the revelation that in September 2016, at the age of just 59, she was diagnosed with adenocarcinoma — the most common form of pancreatic cancer.

Though her mother had died of the same cancer three decades earlier, Pat, who lives with her husband in Bury St Edmunds, had never suspected that a series of changes to her body might indicate the presence of pancreatic cancer, which is found in around 9,600 people across the UK each year.

Now, as she passes the four-year anniversary of her cancer surgery and marks Pancreatic Cancer Awareness Month, Pat is determined to share her story in the hope it will inspire others to be more alert to changes in their body, and continue to get checked out, despite the ongoing health crisis.

For Pat, the first sign that something might be remiss came when she was on holiday in Barbados and started suffering from severe stomach pain, accompanied by excessive belching. She had also been plagued in previous months by a sensation that resembled trapped wind.

While the local hospital suspected a stomach ulcer, and Pat knew anything more sinister was highly unlikely, she pushed for further investigations because of her family history.

The pain in her stomach had vanished by the time she returned to England and her GP told her not to worry, but she persisted until she was sent for a blood test.

Her test came back showing elevated levels of an enzyme called amylase, which helps the body to break down carbohydrates. In most cases this would not be cause for alarm, but once Pat realised a less common link to pancreatic cancer, she worried history was starting to repeat itself.

Pancreatic cancer can be symptomless for a long time, or produce symptoms associated with a range of more common health conditions, so can be difficult to diagnose.

Pat said: “I was straight back to the doctor the following day. He said it was probably gall bladder-related and referred me to a gastroenterologist and for an ultrasound, which he said he would do as a priority.

“The scan picked up something on my pancreas, so I was sent for a further blood test and a CT scan, before being diagnosed on 13th September 2016.

“When I heard that news, my world just fell apart. I had a cup of water in my hand and my body just reacted — my hand flew up and the water flew all over the room. It was instant tears; I was beside myself. It was devastating news, especially given my mum had died of it.

“Telling my son was one of the worst days of my life. I had avoided telling him about the cancer until I knew exactly what treatment I would be going through. To me, protecting your child is a responsibility you carry with you and I didn’t want him to hear that devastating news or to be on the rollercoaster until he had to be.”

From there, Pat had to undergo further tests to determine whether the tumour in her pancreas was operable, which fortunately, it was. After being presented with a diagram of how her distal pancreatectomy operation would pan out, she went — shaking — into a 7-hour surgery to have part of her pancreas, her entire spleen and 28 lymph nodes removed.

She also had her portal vein, which runs through the pancreas, removed to allow surgeons to reach the tumour. It was then replaced with an artificial vein.

At that point, she recalled “People saying, ‘you’ve had the operation and it’s gone now, be positive.’ That made me want to scream ‘yes, but it’s not that simple’. As time goes on you’re not as terrified, but you never take your life for granted again.

“Eating was difficult initially following the operation and mentally I was in a dark place. I was terrified the cancer would return, particularly as recurrence can be common for people who’ve had pancreatic cancer.

“Then came an exhausting regime of chemotherapy which made me feel really agitated and tired for the 12 hours after my infusion. I didn’t feel ill, but I didn’t want to do anything. My hair thinned, which made me self-conscious because I didn’t look like myself.

“At the same time, I could see I was making my husband physically ill by talking about cancer so much, so had to hold it in a bit more.

“A key turning point for me came midway through my treatment, when I attended the Macmillan HOPE course at West Suffolk Hospital. Being with other people in a similar position gave me some relief from the chaos of cancer and introduced me to coping techniques that helped me feel more positive.

“Being able to talk openly about the fears I felt I couldn’t discuss with family and friends was definitely beneficial for me.”

Little did Pat know that her encounter with Macmillan would not end in 2017, when she completed her treatment.

Looking back, she said: “Two years after finishing treatment, I found myself with time on my hands as I bored of retirement rather quickly. So, I decided to call up the Macmillan Centre to see if I could volunteer. That led to me facilitating the course that originally worked such wonders for me, and ultimately to me taking on the role I have now.

“Working during the pandemic has brought its challenges, but our team has managed to maintain a physical presence that is reassuring for people coming in regularly for cancer treatment. Covid-19 has made them anxious about their care and more physically and emotionally vulnerable, so just being able to come in and have a chat, or give us a call, helps them feel more at ease.

“Patients feel they can open up to me because they know about my background, what I’ve been though. One lady told me “you know what I’m feeling, you know what it’s like” and it’s true.

“That’s one of the things I get out of the job — the knowledge that somebody can benefit from my experience. It’s really rewarding for me.”

Professionals like Pat are supported by Macmillan to provide the very best care they can for people living with cancer, but that wouldn’t be possible without donations from the public, which form 98% of the charity’s income.

As Macmillan anticipates an influx of demand for its specialist support services and campaigns to stop cancer becoming the forgotten ‘C’ of the coronavirus pandemic, it is also experiencing a significant drop in income and is appealing for support.

Andrew Yager, a Macmillan GP in Suffolk said:

“Pancreatic cancer is often diagnosed late, with nearly half of patients ultimately diagnosed as an emergency.

“The symptoms of pancreatic cancer can be vague and varied and may include indigestion, abdominal pain and or back pain, unexplained weight loss, nausea, loss of appetite, fatigue, new onset diabetes, or a change in existing diabetes and changes in bowel habit. As such it may mimic common conditions and can be easily missed. It is important to remember however, that most people with these symptoms will not have pancreatic cancer.

“While the risk factors for pancreatic cancer are still unclear, there is evidence that increasing age, smoking, being overweight, chronic pancreatitis and diabetes may increase your susceptibility. Certain genetic factors are also linked to a small proportion of pancreatic cancers.

“GP practices remain open across Suffolk, so if you experience any new health issues that persist for longer than three weeks, it is vital that you get them checked. Acting quickly can make all the difference to your chances of surviving or living well after a cancer diagnosis.

“If you’ve been going for tests or are preparing for treatment, try to avoid getting sucked into an internet black hole of terrifying stories and misleading information. Turn instead to a reliable source of guidance and support like Macmillan’s website, or the Pancreatic Cancer UK Support Line (0808 801 0707), which is staffed by specialist nurses, and available to healthcare professionals, patients and their family members who require more information or support.”

To find out more about pancreatic cancer, as well as possible treatments and the support available, call the free Macmillan Support Line on 0808 808 00 00 (7 days a week, 8am-8pm) or visit www.macmillan.org.uk/cancer-information-and-support/pancreatic-cancer.

The Macmillan Cancer Support Centre at West Suffolk Hospital is open for drop-ins between 9am-4.30pm, Monday-Friday, but visitors are advised to call ahead before visiting. Support can also be access by calling the team on 01284 713023 or emailing cancer.infocentre@wsh.nhs.uk

- ENDS -

For further information, please contact:

Talia Samuelson, Macmillan External Communications Officer — East of England

07703 676493| tsamuelson@macmillan.org.uk

Macmillan Cancer Support

We know cancer worries can’t wait. And we’re here to help. We are doing everything we can to support you right now, whether you’re concerned about symptoms, your treatment, your finances, or need to talk to someone who understands.

For information, support or just someone to talk to, call 0808 808 00 00 or visit macmillan.org.uk. Follow Macmillan in the East of England on Facebook and Twitter.

FACTBOX

What is pancreatic cancer?

· The pancreas is a gland that forms part of the digestive system and sits just behind the stomach, in front of the spine.

· Cancer of the pancreas can come in various forms, the most common type being pancreatic adenocarcinoma, and almost always develops in the exocrine cells of the pancreas[i] where digestive juices known as ‘enzymes’ are produced to help the body digest food.

· It is less common for tumours to develop in the pancreas’ endocrine cells, which produce a hormone called ‘insulin’ to control the amount of sugar in the blood.

· As the cancer can behave differently depending on the type of cell it originates in, it can cause different symptoms as a result.

· Around 9,600 people are diagnosed with pancreatic cancer in the UK each year

Possible symptoms of pancreatic cancer:

  • Pain in the upper part of the tummy (abdomen) that sometimes spreads out into the back
  • Signs of jaundice such as yellowing of the skin and the whites of the eyes; itchy skin; dark yellow pee (urine); pale and smelly poo (stools) that is difficult to flush away (steatorrhoea)
  • Unexplained weight loss, despite having a normal appetite
  • Feeling sick or being sick, which can be a symptom of jaundice, or a result of your pancreas being inflamed and swollen

· losing your appetite

· having indigestion

· feeling bloated after meals

· having diarrhoea or changing bowel habits

· feeling very tired

· being newly diagnosed with diabetes

· getting a blood clot in the leg (deep vein thrombosis or DVT) or the lungs (pulmonary embolus).

Most people with these symptoms will not have pancreatic cancer. They may be caused by other more common conditions. But if you have any symptoms, it is important to get them checked by your doctor.

Possible risk factors for pancreatic cancer

Age — The risk of developing pancreatic cancer increases with age and mostly appears in people who are 65 or older

Smoking — About 3 in 10 pancreatic cancers in the UK (30%) may be due to smoking cigarettes, cigars, and pipes. People who chew tobacco or use other smokeless tobacco products (such as snuff) also have an increased risk.

Diet — Eating lots of red or processed meat may increase the risk of pancreatic cancer, as can having a diet high in fat and sugar, but low in fresh fruit and vegetables.

Alcohol — Drinking a lot of alcohol regularly may increase the risk of developing pancreatic cancer. The risk is even higher for people who also smoke.

Weight — Being overweight or obese and physically inactive may increase the risk of pancreatic cancer.

Family history — Most people with pancreatic cancer have no history of pancreatic cancer in their family. But about 1 in 10 pancreatic cancers (10%) may be linked to faulty genes.

Other medical conditions — Having chronic pancreatitis, diabetes or certain infections can also be linked to a higher risk of developing pancreatic cancer.

Read more about risk factors here.

To find out more about pancreatic cancer, as well as possible treatments and the support available, call the free Macmillan Support Line on 0808 808 00 00 (7 days a week, 8am-8pm) or visit www.macmillan.org.uk/cancer-information-and-support/pancreatic-cancer.

[i] More than 9 out of 10 pancreatic cancers (95%) develop in the exocrine cells that make pancreatic juices. Macmillan Cancer Support

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