Editorial
May 8, 2024
Patients with a rare form of cancer often feel the need to take matters into their own hands. This is evident from PhD research by epidemiologist Eline de Heus. Doctors could involve these patients more actively in the search for diagnosis and treatment.
The term suggests otherwise, but rare cancers are quite common. “One in five cancer diagnoses concerns a rare form of cancer,” says Eline de Heus, epidemiologist and researcher at the Integrated Cancer Center of the Netherlands (IKNL). She received her PhD at the beginning of this year with a focus on care for patients with rare cancer. Shortest conclusion: it could be better.
“The GP is crucial for correct referral for further examination”
Epidemiologist Eline de Heus
Delay
Based on her research, De Heus concludes that patients with a rare cancer can have a complex trajectory. And sometimes unnecessarily long. Delay is the word that regularly arises around the diagnosis. “The group of patients is not only large, but also very heterogeneous,” she says. “That’s the problem. There are 223 known forms of rare cancers. This includes the relatively common rare cancers, such as thyroid cancer. But also ultra-rare cancers that are diagnosed less than ten times a year, such as some neuroendocrine tumors or sarcomas.”
From first complaint to diagnosis may take some time. “The delay starts with the GP, who does not always immediately recognize complaints as a symptom
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