Life

Oesophageal cancer: If your symptoms are persistent, then you must be too

The experiences of two survivors and members of OG Cancer NI prove that awareness and early detection of this lesser-known disease really can save lives

Helen Setterfield is a retired vice-principal of Park School in Belfast. Picture by Declan Roughan
Helen Setterfield is a retired vice-principal of Park School in Belfast. Picture by Declan Roughan Helen Setterfield is a retired vice-principal of Park School in Belfast. Picture by Declan Roughan

TODAY they lead active lives filled with family, friends and hobbies but the outcome could have been so much different for two local women who are helping to publicise a ‘Catch It Early’ cancer awareness campaign.

Helen Setterfield, from Belfast, and Lorraine Pinkerton, from Moira, are both survivors of oesophageal cancer, which affects the gullet or food pipe that carries food from the throat to the stomach.

As members of the relatively new Northern Ireland charity OG Cancer NI, they are committed to highlighting awareness and emphasising the importance of early detection of this lesser-known cancer.

Oesophago-gastric (OG) cancer is the combined medical term for both oesophageal cancer and gastric (stomach) cancer. Symptoms include persistent heartburn, trouble swallowing, regurgitation, heartburn or hiccups that do not go away.

Both Helen and Lorraine use one key word when talking about OG cancer – which affected an average of more than 400 people per year prior to the Covid-19 pandemic – and that is “persistent”.

Lorraine (66), a retired health visitor, believes it was instinct and persistence that saved her life.

“The thing about oesophageal cancer is that a lot of people don’t know about it,” she says. “Despite the fact I had a nursing background, I knew nothing about the disease and had never known anyone who had experienced it.

“At the minute people are so reluctant to go to their GP and bother them, but I just definitely persisted. My motto is that if your symptoms are persistent, then you must be too. If your symptoms keep coming back, then you must keep going back to your GP.”

It’s a message that charity chairwoman Helen is keen to reiterate, particularly in light of Covid.

“The current lockdowns and urgent need to protect the health service has affected the number of people contacting their doctors,” she says. “Recent figures show there has been a drop in the number of referrals to GPs of patients showing symptoms in 2020 compared to previous years so we want to make sure that we reverse that.

“Early diagnosis leads to a much better chance of survival from this cancer which has a 20 per cent survival rate of five or more years, according to the Northern Ireland Cancer Registry 2019.”

Helen, a retired vice-principal of Park School in Belfast, for children with learning difficulties, has been in remission for 17 years, something which she never ceases to feel grateful for.

Her symptoms began when she had difficulty swallowing. “Something was sticking down there and I knew it wasn’t right,” she explains. “I went to my GP and she sent me straight away for an endoscope.

“I went every year for the scope – I hated it – but I am so glad that I did. After the regular scope in 2003 the doctor said ‘everything looks OK. Make your appointment for next year’.

“However, the Wednesday of the next week I got a call to say there was plenty to worry about. I had more scopes. I came home one evening and there was a message on the phone from my GP to say to phone the hospital on Monday morning.”

Helen was admitted to hospital immediately and after numerous tests had an operation to remove a tumour from her oesophagus two weeks later, on December 18.

She was told afterwards that her tumour was aggressive and that she was lucky to have been caught early. The operation had successfully removed all of the cancer.

However, she is concerned that testing – via scopes – is only carried out every two years and that, due to the pressure on medics, it could be every three years in future. And while there is no screening, as there is for breast and other cancers, Queen’s University Belfast is carrying out research to make such testing possible.

Helen also believes there is an urgent need for a new diagnostic tool to be introduced in Northern Ireland which tests for Barrett’s oesophagus, which can be a precursor to oesophageal cancer.?

“It’s a cheap and simple test that can be done in a GP surgery instead of a referral to hospital for an endoscopy,” she explains.

After her recovery, Helen completed the Macmillan Cancer Support Certificate to help others who find themselves in a similar position.

The mother-of-three, who is married to David and has five granddaughters, adds: “One of the best things is to be able to talk to people who have gone through the same thing.

“Most people live with the long-term consequences of oesophageal cancer. I still have difficulty swallowing and acid would come up at night. Everyone is affected in different ways.

“But I have a good life. I enjoy playing golf, albeit badly, holidays, family and friends. There is life after oesophageal cancer.”

Lorraine, a mother-of-four and grandmother-of-10 who had beaten breast cancer 20 years earlier, was diagnosed with a tumour in her oesophagus, aged 59.

“I have a long history of oesophageal reflux and I also have a hiatus hernia, so by the time I was diagnosed with oesophageal cancer seven years ago, I had been on medication for maybe 10 years. I also had the camera or scope test done several times,” she explains.

Over the course of 2012, her reflux symptoms began to get worse and more persistent but a scope test came back normal.

By September 2103, she was battling severe indigestion and pain when swallowing.

Feeling anxious, she returned to her GP, and despite reassurances from the doctor that it was unlikely to be sinister, she remained convinced there was something wrong and repeatedly went back to the surgery. Her persistence paid off.

Following a scope in October, a large tumour was found in her oesophagus.

“I went home in a bit of a blur. There was such a sinking feeling… For quite a while they didn’t know whether it was going to be curable or not,” she says. “Then the word curative was used… and that just changed everything. Once I had the information I knew that although it was a dreadful situation, I could not only work with it but fight it.”

The following February, Lorraine had an oesophagectomy, in which her oesophagus was removed. Prior to the surgery, she underwent two rounds of chemotherapy, which enabled her to swallow again.

Today, she is a volunteer co-ordinator with the charity and has been signed off by the hospital.

She says: “Oesophageal cancer is on the increase and whereas before the disease was typical of a man in his 60s, a lot of younger people are getting it now.

“It’s also vitally important that family members bring it to the attention of anyone in the family who is experiencing the symptoms that affected me.

“Having such an operation does change your diet and how you can eat sometimes, and many patients need ongoing support for these issues which is part of the reason we have a support group. But otherwise, I am very healthy.”

OG Cancer NI was founded in 2018 and works closely with the medical team at Belfast City Hospital.

Among the services it provides are telephone support to newly diagnosed patients, wellbeing meetings, and support and funding for research and equipment projects.

It also works with the medical and caring professions to raise awareness of the cancer.

For further information go to ogcancerni.com, follow @OGCancerNI on Twitter, call 07568 157450 or make an appointment to see your GP.