It is the first time that the NFK has investigated the impact of cancer (treatments) in the long term from a patient perspective.
Still complaining after ten years
The NFK conducted a poll among 5,710 people who have or had cancer, of whom 3,500 people indicated that they no longer had cancer. Of the people in this group who were diagnosed with cancer more than ten years ago, 83 percent indicate that they still suffer from complaints.
The most commonly mentioned complaints in this group are fatigue, neuropathy (damage to the nerves), memory or concentration problems and sexual problems or impotence.
“This poll confirms that cancer has an enormous impact on people’s lives, even if the diagnosis was made years ago,” says Noor van Willegen, NFK’s Advocate for Living Well with Cancer. It affects your daily life, such as your work and hobbies.
“The image is that people are treated for cancer, and some of those people are cured, but many people do not realize that the long-term impact is also significant. That affects your life, your work, your hobbies, etc. “
This also applies to 32-year-old Rebecca ter Mors, who was diagnosed with a brain tumor at the age of eleven. After various treatments and radiation, the tumor started to shrink and ‘now, 20.5 years later, I am stable.’ says Rebecca.
Rebecca also had complaints after her cancer treatment. “For example, I have to make sure that I only make one appointment outside the home per day, because otherwise it costs me too much energy.” She also suffers from concentration and memory problems and has a mild balance disorder.
These consequences are often not visible to the outside world, and are therefore sometimes difficult to understand for other people. Because Rebecca was diagnosed with cancer at a very early age, the consequences were already great in her young life.
“My entire adolescence I was busy with rehabilitation and I had no time for ‘normal adolescent things’, such as going out. As a result, I always had the feeling that I was missing out at school, during my studies, with family and now also regularly in the working life.”
Rebecca never received professional help for her complaints after cancer treatment, even though she needed it. “I can now possibly talk to a psychologist via the LATER clinic, but I have not done that yet. At the moment I have no desire to go into that whole medical mill again.”
Van Willegen says that the NFK hopes that this research will draw more attention to these long-term complaints. “We think it is important that people receive the right care or support to prevent, remedy or learn to deal with the physical and psychological consequences.”
Moreover, one in six people in the group that no longer has cancer indicate that they still suffer from sadness or depressive feelings.
One in seven has complaints for which they do not receive professional care, but would like to do so. Some of these people indicate that they find it difficult to ask for care, because they feel that this is no longer possible after a diagnosis years ago.
The NFK now wants to eliminate this. “There is care and support, but people do not always know where to find it. We recommend that you return to the hospital or to your GP with complaints, even if it is long after diagnosis.”