"My name is Arco and I am 59 years old. My wife and I live in Heemstede, a lovely place with a beach, sea and other natural surroundings nearby. Our two sons study in Amsterdam. My wife and I walk and cycle a lot, I go to the gym regularly and we often invite friends over for dinner. All in all, we live a fairly healthy life."
A few years ago you had a oesophageal tumour. What exactly happened?
"I quit smoking in 2009. However, I still had a smoker's cough for three years. Then, on my wife's advice, I went to the doctor, who referred me to the hospital. Nothing showed up on a lung X-ray, but an endoscopy revealed that I had Barrett's oesophagus. I was given antacids and I remember the nurse saying: ‘This will keep you alive until you're 100 if you take the medication and sleep with your head elevated’. From that moment on, that's what I did. I also had annual check-ups, just before the end of the year. The results were always good. Sometimes the mucosa was a bit more turbulent, sometimes not, but it was never alarming.
Until 2018. I didn't get the results until February: too many turbulent cells had been seen and a biopsy had been sent to the hospital in Amsterdam. They still tried to reassure me, saying: ‘It is a big step to go from abnormal cells to oesophageal cancer'.
In Amsterdam I underwent endoscopic treatment, during which they removed the abnormal cells from my oesophagus and immediately took a biopsy for further examination. Shortly afterwards, the nurse called with the bad news: they had found cancer. The good news was that they had been able to remove the tumour and that it had not yet penetrated deep into the oesophageal wall. This news was very unreal for me, I was totally unprepared for it.
A very uncertain period began. Because even though we had caught it in time, I still had to undergo all kinds of tests to rule out metastases. I had CT and other scans, it was a scary time. From May 2019, they started to burn away the Barrett's mucosa. Fortunately, you don't feel a thing because it is done under full anaesthesia."
What happened after the treatment?
"I felt fine at the time. The road to recovery had begun, I was clean and they were removing the Barrett's oesophagus. At the time I did not feel like a patient because I did not feel any discomfort from the Barrett's oesophagus or the cancer. As a result, I started to ignore it. I just wanted to get on with my day. There was also a lot going on at work and that was another reason why I chose not to tell my friends and colleagues about my illness. Only my family knew about the cancer and the treatment. It sounds strange, but I didn't want to show my weakness. In hindsight, that wasn't a very smart thing to do, because I couldn't tell my story. The illness, pushing it away and the difficult time at work ultimately caused me to suffer from burnout. I no longer feel any discomfort from my illness and that sometimes makes it a bit surreal. I don't feel like a patient, but you know you’ve been ill. That it's in your body. That creates a different awareness. I have changed mainly in a mental sense; I have a different outlook on life. After the illness and burnout, for example, I chose to start my own business as a freelance communications consultant. I have a more conscious approach to life."
What helped you to come to terms with your illness?
"In the end, contact with others in the same situation helped me a lot. I got in touch with someone my age, Taco. He had already been through the process for a few years and I found a lot of support in him. We are still in touch. And I am now telling my story to more people. I notice that it helps me. Visiting patient days also helps me. Because what I have experienced still affects me deeply. I also see this interview as part of the acceptance process. I am still in the processing stage. It now has a place in my life and that feels good."
Are you still under medical supervision?
"So far, I have had an endoscopic examination every three months, plus an ultrasound of the lymph nodes. It is always a bit nerve-racking, but I am confident. If the next check-up is also good, we will switch to an annual check-up. I find that nerve-racking because there will be a longer period of time between check-ups, and that makes me feel insecure."
Can you explain why the research of Dr Roos Pouw and her team is so important?
"On the one hand, as a patient, you benefit from being checked as much as possible. Every physical check-up and good result is reassuring. Dr Roos Pouw's research, on the other hand, tries to reduce the number of check-ups. It relies more on data and fewer endoscopies. If you reduce the number of physical examinations, you have to compensate for that with the humane side. You have to have confidence in your doctors and the team and know that they are open about the risks. What I really appreciate is that Roos Pouw's team has the ability to give me that confidence. That way, the reduced physical monitoring is compensated for me"
Before doing the examination, we want to know if the yearly check-ups are actually necessary. Because new research has shown that the chance to get cancer or Barrett’s mucosa again is very low in people who have been treated.
Why should someone support this research as a donor?
"A young colleague of mine died of oesophageal cancer a few years ago. The cancer was discovered far too late. My message is: we must continue to monitor people with Barrett's oesophagus very closely. Only a small percentage of people with Barrett's oesophagus develop cancer, but it still happens too often. You don't feel sick, which makes it so treacherous. If my wife hadn't told me to see a doctor, I wouldn't have gone and it could have ended very differently. Support research into oesophageal cancer and proper screening methods, it could save lives!"