This is the first time that NFK has investigated the long-term impact of cancer (treatments) from the patient's perspective.
Still complaining ten years later
The NFK conducted a poll among 5,710 people with or having cancer, 3,500 of whom indicated that they no longer had cancer. Among people in this group who were diagnosed with cancer more than ten years ago, 83% indicate that they still suffer from complaints.
The most common complaints in this group are fatigue, neuropathy (nerve damage), memory or concentration problems, and sexual problems or impotence.
“This survey confirms that cancer has a huge impact on people's lives, even if it was diagnosed years ago,” says Noor van Willegen, NFK advocate for living well with cancer. It affects your daily life, such as your work and hobbies.
“The picture is that people are being treated for cancer, and some of those people are cured, but a lot of people don't realize that the long-term impact is huge as well. It 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 11. After several treatments and radiation, the tumor began to shrink and “now, 20.5 years later, my condition is stable.” Rebecca says.
Rebecca also suffered from complaints after her cancer treatment. “For example, I have to make sure I only schedule one appointment outside the house a day, otherwise it costs me a lot of energy.” She also suffers from concentration and memory problems and suffers from a slight balance disorder.
These consequences are often invisible to the outside world and therefore sometimes difficult to understand for others. Because Rebecca was diagnosed with cancer at a very young age, the consequences were already severe in her young life.
“I was busy with rehabilitation throughout my adolescence and had no time for 'normal teenage things', like going out. As a result, I always had the feeling that I was missing out on school, while studying, and with family and friends. Now also regularly in working life.”
Rebecca never received any professional help for her complaints after cancer treatment, even though she needed it. “I could now talk to a psychiatrist through the LATER clinic, but I haven't done that yet. At the moment I have no desire to go through this whole medical factory again.”
Van Willigen says NFK hopes this research will bring more attention to these long-term complaints. “We believe it is important that people receive appropriate care or support to prevent, treat or learn how to cope with physical and psychological consequences.”
Furthermore, one in six people in the group who no longer had cancer indicated that they still experienced sadness or feelings of depression.
One in seven have complaints where they do not receive professional care, but would like to do so. Some of these people indicate that they find it difficult to seek care, because they feel that it is no longer possible after being diagnosed years ago.
NFK now wants to eliminate this. “There is care and support, but people don't always know where to find it. We advise you to go back to hospital or to your GP to make complaints, even if it's been a long time after diagnosis.”
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