Special professor emphasizes the psychological impact of cancer: 'It is often not over after medical treatment'

Special Professor and health psychologist Marije van der Lee (52) guides people facing cancer through the psychological process surrounding, but especially after, the cancer diagnosis and treatment. To provide better care for people affected by cancer, Van der Lee advocates for recognition of the psychological impact and no longer separating the body and mind.

Cancer, as harsh as it may sound, has become an integral part of our society. The latest figures show that 1 in 2 Dutch people will develop cancer. Metro previously spoke with radiologist Sofie De Vuysere , who herself has been diagnosed with breast cancer, and psycho-oncology therapist Eveline Trom explained how she helps terminally ill people cope with impending death.

Marije van der Lee is a professor of clinical psycho-oncology, a healthcare psychologist, and head of research at the Helen Dowling Institute, an organization that provides psychological care for cancer patients. People often end up there after medical treatment. Sometimes the cancer is cured, sometimes not, but in either case, psychological problems can arise.

"I started there as a student, interviewing women with breast cancer about emotions. I've always been fascinated by how physical illnesses affect how we feel. My mother was a general practitioner, so I've always had a medical interest as well. But I can't stand the sight of blood," laughs Van der Lee. "So I chose a medical-psychology track."

Van der Lee has worked in psycho-oncology for a long time, a field that focuses on the psychological impact of cancer. "I see how people are affected by cancer. First, there's the confrontation with the diagnosis, often followed by intense treatments, sometimes with physical consequences. Some people are then told that the treatment needs to be repeated, that it didn't work, or that recovery isn't possible. For me, it's normal that all of this has a psychological impact. Yet, in the medical process, and also in the world outside of it, there's often little attention paid to the psychological aspects of cancer."

According to the healthcare psychologist, many people do experience psychological distress. "For example, even after treatment is completed, the process isn't over yet. Yet, we still too often think in terms of 'it's over,' 'cleared up,' and 'celebration,' but you often see that people are lonely in the post-treatment process. As a psychologist, that's self-evident, but if more is known about it, we can reduce the psychological impact of cancer."

The endowed professor, who holds a chair at Tilburg University, therefore wrote the book "The Psychological Impact of Cancer ." It's intended to appeal to a wider audience about this topic, but also to raise awareness among healthcare providers and physicians.

She lists several psychological struggles people can face during or after cancer treatment. "People often experience prolonged fatigue, sadness, sometimes depression, fear of the cancer returning, insecurity, and some even develop post-traumatic stress disorder (PTSD) due to certain events. But cancer also impacts relationships, for example. While every relationship has its challenges, these can be magnified with cancer."

She continues: "Suppose in a relationship, one partner has a 'glass half full' mentality and the other a 'glass half empty' mentality. You could say that balances each other out. But with cancer, you get a different effect. If the ill partner is somewhat pessimistic, and the 'healthy' partner keeps emphasizing that '80 percent of people survive cancer' and keeps saying 'cheer up,' then misunderstandings arise. But it also works the other way around. For example, the ill partner might be very optimistic or even in denial, while the other is more fearful and views the diagnosis more pessimistically. That can be difficult to talk about."

The healthcare psychologist explains that it's often a combination of factors that can be quite challenging for people affected by cancer. "You hear different experiences and stories. My book is precisely intended to highlight how different people can be."

Van der Lee explains that this psychological impact can be complex. "Imagine you grew up with hardworking parents and a 'no nonsense, just get on with it' mentality. After cancer treatments, you feel you need to get back to work quickly. But you're struggling with symptoms, worrying about them, sleeping poorly, making mistakes at work, and you experience that as something very distressing. All of this reinforces each other and can create a negative spiral."

She continues: "It's especially important in cases like these that you can ask for help, talk about it, perhaps work a little less or more from home, and think to yourself, 'I'm doing my best.' You don't have to end up in a negative spiral."

According to Van der Lee, there's often a connection between past experiences and coping with an illness like cancer. "Some people have gone through things at a young age or received little support. They live by certain beliefs and believe that no one will help them. That can be very difficult with cancer, especially if you experience so much misery in a short time and are unable to recover. And then financial problems, relationship issues, and childcare can also arise, and all of these can compound each other."

Van der Lee: "It's not about one specific reason; it's amplification of all sorts of factors. Physical, psychological, social—in other words, it's a whole network. We should look more at the whole." Professor Anne-Mei The previously shared a similar message about people with dementia.

According to Van der Lee, our healthcare system isn't properly aligned with this broader perspective on cancer. "Mental and medical care are separated within our healthcare system, but that doesn't work. In our bodies, the two aren't separate either. Everything that's mental has physical components, and vice versa. But we separate body and mind, both in our society and in our healthcare system."

That's why the healthcare psychologist encourages healthcare providers to recognize this network more. "So that different areas of expertise can collaborate. And you don't have to separate psychology and medicine. Medicine, as the word suggests, focuses primarily on 'curing,' but feeling healthy is just as essential. It's equally important that psychologists also become aware of the physical processes involved in cancer. Collaboration between different areas of expertise is faltering, something I hear from oncologists as well. There's also a financial aspect to that. It's not easy to combine those strengths."

According to Van der Lee, care for people affected by cancer is too fragmented. "You go to the oncologist for MRI scans and blood tests, for example, and to physiotherapy for lymphatic support. Then there's a dietitian with nutritional advice, and a psychologist for the psychological aspects. But it all really belongs together. Take physiotherapy and exercise, for example. This is beneficial for physical recovery, but also good for mental well-being and prevents psychological problems. In cancer treatment, we look at the body very technically, which can sometimes lead to a sense of alienation from the body. The goal is for such a person to feel whole again."

By seeing the bigger picture, people with and after cancer gain more control, says the endowed professor. "People who have or have had cancer can feel more emotional and depressed, for example, and don't always recognize themselves anymore. They also have no control over fatigue. By acknowledging that everything is interconnected, they experience more control over everything that's happening. Understanding that, you can slow down or be more accepting of certain things."

She continues: "Fatigue is a good example. It can be incredibly limiting, and that's why people with cancer try so hard to get rid of that fatigue. And yes, they actually do more and become more tired. By accepting it and thinking, 'it is what it is,' you can learn to cope better. Without assuming it will stay this way forever."

Van der Lee cites 'acceptance,' 'time,' and 'asking for help' as three key pillars in cancer recovery. "And sometimes people simply need a little more explanation. For example, understanding that certain effects can be permanent. Chemo, for example, is a drastic treatment that can cause lasting damage. Some people recover completely, but if you're not that lucky, it can be frustrating if you don't regain your fitness or can no longer pursue a hobby or sport. Acceptance helps a lot. Fear of the cancer returning can also linger for a long time. A little anxiety isn't bad and will never completely go away, but if you have to check your body all day, then you're also dealing with cancer all day long, and it starts to interfere with your life and functioning. Emotions are part of it, too. But if you get too bogged down by them, it's important to seek help."

Suppose someone close to you has been diagnosed with cancer. Van der Lee has some advice on how to handle it well. "You can always ask questions. 'How are you today?' 'Do you want to talk about it?' 'Or would you rather talk about something else?' Everyone handles this differently. Sometimes a patient would rather not talk about it, or perhaps they would. And it's not nice at a party if the diagnosis is constantly being discussed, but it's also not nice if no one mentions it. It's all about being subtle. Be curious and ask sincere questions. Don't forget that someone affected by cancer isn't finished after medical treatment. There's still a process afterward, and it's very helpful to let them know you're thinking of them or to pay attention to that process."

The healthcare psychologist hopes that her book and message will help more people understand the psychological impact cancer can have. "It would be wonderful if we knew this, dared to ask about it, and dared to offer support. I also hope that healthcare providers, even those with specialized training, realize that their expertise isn't the whole story. As a healthcare provider, connect with the whole person and their surroundings and see your expertise as part of a whole. It's important that we consider the whole person and not just a small part."