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One in three with rare cancer is first misdiagnosed

This is shown by research by the Dutch Federation of Cancer Patient Organizations (NFK) among 2027 people who have or have had a rare form of cancer. Four in ten of these patients have received treatment, therapy, or medication for that misdiagnosis.

For almost a third of the participants in the study, it took more than four weeks between the first consultation with the doctor in the hospital and the diagnosis of a rare cancer. The current professional standard prescribes that a diagnosis must in principle be made within three weeks after the first outpatient visit.

The Netherlands has 130,000 people with rare cancers such as anal cancer, bile duct cancer, vulvar cancer, thyroid cancer and brain tumor. The chance that people with a rare cancer will survive their disease is 15 percent lower than in patients with common cancers.

According to the cancer patient organizations, this may be partly explained by the delays in making the correct diagnoses.

To specialized centers

The cancer patient organizations and the Dutch Cancer Society are calling for people with rare forms of cancer to be examined and treated in specialized centers. This preferably concerns University Medical Centers (UMCs).

For some rare cancers, such as head and neck cancer, national agreements have already been made about this. For blood or lymph node cancer, it has been agreed that each patient is discussed with a specialized center.

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