Many people with a rare form of cancer are not correctly diagnosed until a later stage. This is according to a study published Monday by the Dutch Federation of Cancer Patient Organizations (NFK). According to the federation, this concerns a third of the patients. Four in ten of this group had even been treated for that incorrect diagnosis.
In response to the results of the study, NFK expresses its concern about late or incorrect diagnoses, as cancer is a progressive disease that must be detected as early as possible.
According to the federation, the outcome of the study may be related to the fact that people with a rare form of cancer have an average 15 percent worse chance of survival than patients with a more common form of cancer.
“That is why it is important to timely referral to specialized centers. No or incorrect diagnosis causes people a lot of worry and uncertainty. In addition, treatment of an incorrect diagnosis is ineffective and can lead to side effects. In the meantime, the cancer can also develop without effective further expand treatment “, says Arja Broenland, director-director at NFK.
According to the study, patients are by no means always treated in specialized centers, such as University Medical Centers (UMCs). The NKF study shows that 51 percent of people with rare cancer are treated there, which raises the question of whether enough patients receive specialized care.
One in ten participants was only referred after year
Rare forms of cancer include thyroid cancer, vulvar cancer, anal cancer and bile duct cancer. In the Netherlands, about 130,000 people have such a rare form of cancer, while around 20,000 Dutch people get a rare form of cancer every year.
NFK’s poll shows that half of the participants were referred to hospital within two weeks. For a quarter it took three months or more and for one in ten respondents it took more than a year.
In addition, NFK notes that the professional standard for making the diagnosis – in principle within three weeks – was not met by almost a third of the respondents.
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