Niels Harthoorn is 23 years old and studies technical business administration at Saxion University of Applied Sciences and lives nearby in a student house with 5 roommates. In the summer of 2019, he was diagnosed with stage 4 lung cancer; he wouldn’t get any better. He then had his VWO diploma for well over a week. At the general hospital where Niels received his diagnosis, he was initially told that he probably didn’t have much time left. But after a second opinion at Erasmus MC, it turned out that the cancer had a mutation that made targeted therapy possible. Niels: ‘In a week it went from nothing to worry about, to very sick, to perspective again. It was very unreal.’
‘I was in my last year of secondary school and I wanted to study at the Technical University of Twente,’ says Niels. ‘I went to the physio for a knee injury and was able to start exercising again. Until one afternoon after a 5 minute warm-up I became completely out of breath.’ The physiotherapist advised him to go to the doctor. Niels: ‘The GP listened to my lungs for 10 minutes, but he didn’t know what was going on either. So I was referred to the hospital to have pictures taken.’ It turned out to be wrong in the hospital.
‘The pictures showed that there was a lot of fluid behind my lungs. I had to stay in the hospital, was immediately taken to the emergency room,’ says Niels. “They were surprised I could still walk at all.” The doctors thought there might be something wrong with Niels’ heart, but also linked him directly to a pulmonologist. ‘They had placed a drain to drain the fluid and then immediately took tissue, although they didn’t tell us until later.’ Niels was in hospital for 3 days, not knowing what was going on. ‘Until my parents had to go to the meeting with the lung specialist. Then I was told I probably had lung cancer. A week later, after the results of the tissue test, it was certain.’
Accept that you won’t get better
After the second opinion at Erasmus MC and the option of targeted therapy, Niels had some perspective again, but that didn’t necessarily make it any easier. ‘You have to accept that you are ill and will not get better. I had a lot of trouble with that in the beginning, although it gets better over time. Yet every time you have to find the right balance in what suits you well. But at first you don’t know what to do with it,’ says Niels. “And you immediately start to wonder things like, ‘What have I done?’ or “How come?” While there is of course no reason for the cancer, you are just very unlucky.’
“It was also very difficult for my family. We cried a lot together, my parents, sister, my grandparents, uncles and aunts. You suddenly see a lot of people crying that you have never seen cry before; it’s almost an upside-down world. That was difficult,’ says Niels. ‘I noticed that friends and family sometimes didn’t know how to react. They want to know what needs to happen for you to get better and then you have to explain that you can’t get better right now. That is shocking.’
Still studying
‘It’s not easy when you meet new people,’ says Niels. “Am I going to tell them I’m sick, aren’t I?” His roommates are aware. Niels explains: ‘Shortly after my diagnosis I decided that I wanted to study at the University of Twente. That was a week before the academic year started, so I had to arrange everything, including a room.’ 1 spot had just become available in a student house and Niels went to visit. ‘I was immediately offered a beer. I said I couldn’t drink because of my medication, so I was asked what that medication was for. I’m not going to hide that at a time like that, so I told them right away.’ That worked out well, says Niels. ‘They really appreciated that I was open about it. I’ve lived there ever since.’
Niels sometimes notices that he is out of step with his peers. ‘On the one hand, I am in my first year of my studies, while friends are starting a master’s or have already finished it. On the other hand, I notice that I am actually more mature.’ The connection with fellow sufferers is also not always ideal. ‘Most people with lung cancer are a lot older than me, the age of my parents, or even older. They are busy with completely different things: taking early retirement, wondering how much time they have left with their grandchildren. While I’m studying and want to do fun things.’
Not always concerned with illness
That is why Niels, as part of the patient panel of Lung Cancer Netherlands, organizes contact with peers who have lung cancer. ‘We just do that via a Facebook group, since there aren’t many of us.’ Niels has a full agenda, it turns out. In addition to his study and participation in the patient panel of Lung Cancer Netherlands, he is also part of the INVAYA research team. ‘I like that, to be so busy. I feel healthier when I’m busy, it gives rhythm. I don’t have to constantly think about the fact that I’m sick. Even though I notice that because of the illness I get tired faster if I do a lot and therefore can’t always keep myself to the rhythm. As a result, the thoughts of being ill come back and that is quite confronting.’
The corona pandemic was particularly confrontational for Niels, he says. “I have been self-isolating from the time it was recommended for vulnerable groups, through all the lockdowns, until I could get a vaccine. I absolutely did not want to get corona. But that meant that I was confronted every day with the fact that I was sick,’ says Niels. “It cost a lot mentally. We came out stronger as a family, with the help of a psychologist from the Helen Downing Institute [ggz-instelling die zich richt op psychologische zorg bij kanker]† But that help was necessary, to learn to deal with it.’
Dealing with caregivers as a young lung cancer patient
‘You can tell from healthcare providers that they are not used to young patients who have lung cancer. Some deal with it better than others,’ says Niels. ‘My GP, I notice, takes a more business-like approach. But, for example, I’ve had caregivers talk to my parents instead of me during an appointment. Well, they do talk to me, but they look at my parents.’ He continues: ‘You are treated as an adult patient, which means, for example, that conversations only last for a short time. If I had been 17, it would have been a completely different story, they would have had a lot more time and attention for me.’ Now health care providers are mainly focusing on the medical part, according to Niels. ‘But maybe I like that better myself. I don’t know how it would be otherwise either.’
‘I now have a very nice lung specialist; she gets along well with younger patients. For example, she takes longer for a conversation when necessary,’ says Niels. Together with his current lung specialist, Niels organized the White Ribbon Tour, an action to draw attention to lung cancer and to raise money for research. Many pulmonologists in the Netherlands took part. “That was a really cool thing to do. But because you’re doing something like this together, I think it’s going to be more difficult for my pulmonologist when she has to give me a bad result.’
At my current education I’m just Niels. I belong again.
Just being able to be ‘Niels’
In September of last year, Niels made the switch to HBO and he likes it very much. ‘It is easier to do than university in terms of workload and you are also more involved in practice.’ He is doing quite well at the time of the interview. Unlike his time at the UT, Niels has not told his fellow students at the Hogeschool that he has cancer. ‘Most people around me cope well with my illness, but I noticed during my studies that people treated me differently. People avoid you, are afraid to ask questions. At my current education I’m just Niels. I belong again.’
When Niels recently had to apply for an internship, the question arose again: am I going to tell them that I am sick or not? ‘At first I didn’t want to, but I had to explain why I went from university to HBO. I said I was sick; they wanted to know what I had. I couldn’t escape it,’ says Niels. ‘But I did get the internship. If you are open and indicate that things are going well, that you want to continue: my experience is that people understand that.’
More information
This interview is part of the report ‘Cancer in young adults’ that IKNL and the National AYA ‘Young & Cancer’ Care Network published in June 2022. The report includes figures and stories from young adults with cancer.