Oesophageal cancer: The symptoms we're glad we didn't ignore
Every year in Northern Ireland 200 people are diagnosed with oesophageal cancer, which has relatively low survival rates as it is often detected too late. As a new campaign to raise £15,000 for new equipment starts, Karen Ireland talks to three people who regard themselves as the ‘lucky ones’ because they were treated early.
‘When I was diagnosed, we were all numb but strength takes over’
Helen Setterfield, a retired school teacher, lives in Belfast with her husband David. She has three children Andrew, Stephen and Kathryn as well as four grandchildren. She says:
Nowadays I spend as much time with my family as possible and help look after my grandchildren. I cherish every moment with them as 13 years ago my life changed forever.
I was having difficulty swallowing for some time and knew something wasn’t right so I went along to my GP. He sent me along for a scope test and everything was fine, but as I was having problems, the doctor decided to call me back in a year to do another one.
That year, I went for my scope and the registrar saw me and said everything looked fine and they would see me again in another year. But the following week I got a call from my GP on a Friday to say the hospital had been in touch and I had to call the ward on Monday.
He said it was probably nothing to worry about but I knew they wouldn’t want to see me that soon if everything was okay.
I couldn’t settle at home and my daughter called the ward right away and the registrar who had seen me answered the phone and said to come straight up.
He explained that they had spotted something in my biopsy and wanted to do further tests so I needed to be admitted on Monday. Of course, that was a long, difficult weekend for everyone as we all worried about what the tests would reveal.
I was in hospital for a week and had all sorts of horrible tests. Eventually I was told I had oesophageal cancer and there was a tumour in my oesophagus. We were all numb with shock, but a strength takes over. I just wanted to be well again and have the operation. It involves part of the stomach being taken away.
Not every patient will require this type of surgery but it was necessary for me, and I spent four weeks recovering afterwards in hospital. On Christmas morning, the consultant came around and said he had a present for me — I had the all clear and was now cancer-free. That was the best news ever and I was allowed go home to be with my family. That was a very special Christmas and we were all very thankful. I am lucky as I was diagnosed and treated early but I know the statistics and it could have been a very different story.
Now, I’m chairperson of the Oesophageal Patients’ Association (NI) which aims to help patients on their journey from diagnosis through treatment and to help to raise awareness of the signs and symptoms.
Having oesophageal cancer was life-changing for me as it’s a chronic condition. And I will have to live with the after-effects for the rest of my life. I have difficulty eating certain foods so I need to be careful that nothing gets stuck when I’m swallowing. Since I was first ill, I’ve been in hospital five times to have a procedure on my throat. At night I have to sleep on a raised bed with four pillows. But this is a small price to pay and the alternative is unthinkable. You just adapt your life and change.
The most important thing is to stay positive and I had great support from my family and friends. It was like role reversal in my house with the children looking after me and telling me what to do. I couldn’t have got through this without them and my husband.”
‘Early detection really does save lives, I am proof of that’
Frances Hill (66) a retired Queen’s University lecturer, lives in Carryduff with her husband Brian. She has two daughters, Sonya and Lucy. She says:
Looking back, I was very fortunate as my symptoms weren’t too bad, but, because of that, they could easily have been overlooked.
Last July I was having trouble swallowing although I was managing to eat and drink.
I went to the GP to get it checked out anyway.
He didn’t think it was anything sinister but sent me to see a consultant just to make sure.
The consultant decided to do a scope test which revealed I had a tumour and, following various tests and scans, it was revealed I had oesophageal cancer.
I was referred to the Cancer Centre in the City Hospital, Belfast, where they did more tests to make sure the cancer hadn’t spread anywhere else. That was the worst and most worrying bit — waiting for the results. Afterwards I had to have two rounds of chemo before surgery.
In the end, I had to have two operations as there was a complication with one of the ops which set my recovery back.
I was in hospital for four and a half weeks, getting home just days before Christmas on December 23.
I wasn’t in much form for eating my Christmas dinner last year but that didn’t matter as I was home with my family.
The physical recovery has been slow and it takes a while to eat normally again. It is a long process.
I was very fortunate as I was diagnosed and treated early. The outcome could have been very different.
Today, I am very thankful for all I have and try to focus on moving forward.
My husband and daughters have been fantastic all the way through this journey and I have amazing friends as well.
The hospital staff were wonderful as well and the Macmillan nurses.
You are never left on your own to deal with things. There is always someone to talk to.
I would encourage anyone with any symptoms they are concerned about — no matter how small to go and get them checked out.
Early detection really does save lives. I am proof of that.”
‘It was so distressing and a very anxious time for me’
Tom Hague (73) lives in Lisburn with his wife Pauline. He has three daughters, Karen, Laura and Fiona and four grandchildren. He says:
My problems started about five years ago when I felt as though I had indigestion all the time.
While I didn’t have any other symptoms, it was persistent so I decided to go to my doctor.
He recommended going for a scope test which the consultant did. This revealed I had Barrett’s Oesophagus which is an inflammation. He said it was easily treated and I had to take medication for it every morning and night.
For about a year and a half I had no further problems and everything cleared up but then suddenly I felt as though it was starting to flare up again.
I went back to see the consultant who decided to do a scope test straight away, even though I wasn’t due to have one for six months. The test showed that I had a tumour in my oesophagus. It was so distressing and a very anxious time for me and my family. We were worried that the cancer might have spread to other parts of my body.
Fortunately, the test revealed the tumour had been detected at an early stage, and was confined.
Afterwards, the first part of my treatment involved nine weeks of chemotherapy. Luckily, I was able to take this in tablet form at home and didn’t have to go into hospital.
After that I had a nine-week break before surgery to remove the tumour. I describe this as being re-plumbed as they had to remove part of the stomach.
Three weeks after the operation I was able to go home, followed by another round of chemo when a few months had gone by.
The specialists wanted to ensure they had treated the cancer.
My consultant said that the chemo had killed the tumour so anything that was left would have been treated as well.
It was another two years before I felt that I was back to my normal self.
The team at the City Hospital, Belfast, was wonderful, as was my family. Everyone got me through my illness.
My consultant was positive from the beginning that he could treat me so I placed myself in his hands and kept upbeat too.
I joined the Patients’ Association who offer incredible support. Being part of the group gave me an outlet — it was great just to talk to other people who had been through a similar experience; it was reassuring to know what I was feeling or experiencing was normal.”
Patients’ association organising 110-mile fundraising cycle ride
Statistics show that 83% of patients diagnosed with oesophageal cancer at a late stage will die within five years.
Sufferers will have difficulty swallowing or persistent heartburn. This type of cancer affects mostly men who often ignore the signs or treat the symptoms with over-the-counter medicines.
One in five with a diagnosis is aged between 40 and 60.
The Oesophageal Patients’ Association (NI) has organised a cycle challenge to raise money for specialist equipment for the treatment of early, oesophageal, stomach and rectal cancers. This will be the first for Ireland.
Consultant physician and gastroenterologist Dr Inder Maine said: “This equipment will allow us to grade the cancer more precisely. Patients should be discharged from hospital between 24 and 48 hours after the procedure. Japan has been using this equipment for a number of years and its data shows survival rates and outcomes are better.
The two-day fundraiser, Castle to Castle, will take place on June 18 and will involve a 110-mile cycle from Carrickfergus Castle to Ballycastle and back.
For more details visit opani.org