Home » Health » ‘One in three people with rare cancer is misdiagnosed’

‘One in three people with rare cancer is misdiagnosed’

One in three people with a rare cancer is initially misdiagnosed. Sometimes it is one misdiagnosis, but in some cases there are multiple misdiagnoses. This is shown by research by the Dutch Federation of Cancer Patient Organizations (NFK) among 2027 people with a rare form of cancer.

Every year, about 20,000 people are diagnosed with a rare form of cancer. There are 130,000 people in the Netherlands with a rare type of cancer, such as bile duct cancer and vulvar cancer. The chance that people with such a type survive the disease is 15 percent smaller than with cancers that occur more often, according to research institute Integrated Cancer Center Netherlands.

Half of the respondents who went to their GP with complaints were referred to hospital within two weeks. For a quarter this took longer than three months and for one in ten even longer than a year.

Correct diagnosis after six months

“We understand that general practitioners do not immediately think of cancer with every complaint, but rare cancer should also be considered if symptoms persist,” says NFK director Arja Broenland. “It is important to detect cancer at the earliest possible stage.”

Even once people have been referred to hospital, it can still take a long time before the correct diagnosis is made. In one in three patients, there was more than four weeks between the initial consultation with the specialist and the determination of the correct diagnosis. For 8 percent this took longer than six months. Medical specialists have agreed that a diagnosis or referral must be made within three weeks after a first doctor’s appointment in the hospital.

The NFK and KWF Kankerbestrijd advocate that people with rare forms of cancer should be examined and treated in specialized centers, because not everyone may receive specialized care at the moment. For some rare cancers, such as head and neck cancer, national agreements have already been made about this.

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