Not immediately correct diagnosis for people with rare cancer

This is shown by research by the Dutch Federation of Cancer Patient Organizations (NFK) among 2027 people who have (had) a rare form of cancer

Before the correct diagnosis is made, one third of people with a rare form of cancer are first told one or more misdiagnoses. Four in ten of these patients have received treatment, therapy or medication for that incorrect diagnosis (s).

This is shown by research by the Dutch Federation of Cancer Patient Organizations (NFK) among 2027 people who have (had) a rare form of cancer. According to the cancer patient organizations, a delay in making the correct diagnosis could possibly be one of the reasons why people with a rare form of cancer have on average a 15% worse chance of survival than people with a common form of cancer (source: IKNL, 2018).

Specialized centers
During the ‘Week of Rare Cancers’, the federation, together with KWF, is therefore calling for people with rare forms of cancer to be examined and treated in (yet to be designated) specialized centers, preferably in University Medical Centers (UMCs). For some rare cancers, such as sarcomas and 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. This poll shows that 51% of people with rare cancer are treated in a UMC. NFK wonders whether all people with rare cancer receive specialized care.

About 20,000 people get a rare form of cancer every year. The Netherlands has 130,000 people with rare cancers such as anal cancer, bile duct cancer, vulvar cancer, thyroid cancer and brain tumor. The online poll shows that most people with a rare cancer went to the doctor with their complaints. Half of them were referred to hospital within two weeks, but nearly a quarter took three months or longer, one in ten more than a year.

For almost a third of the respondents, there was more than four weeks between the first consultation with the doctor in the hospital and the diagnosis of rare cancer. The applicable professional standard of SONCOS prescribes that a diagnosis must in principle be made within three weeks after the first outpatient visit. When referring to another hospital, the standard applies again for this hospital. 8% of people with rare cancer report that it took six months or more to be diagnosed, after the initial consultation with a doctor in the hospital.

The first diagnosis was immediately correct for two thirds of the respondents. However, nearly a fifth were misdiagnosed with one and one in eight multiple misdiagnoses. Four out of ten people with one or more misdiagnoses also received treatment for this.

According to NFK, the late or misdiagnosis of a progressive disease like cancer is worrisome. It is very important to detect cancer at the earliest possible stage. This is to prevent the spread of the disease and thus increase the chances of successful treatment. “It is understandable that the GP does not immediately think of cancer with every complaint. But if the complaints persist, it is important that the possibility of a rare cancer is also considered. We therefore ask GPs not to wait too long before referring them to the hospital for a follow-up examination, ”says Arja Broenland, director of NFK.

A rare cancer is often more difficult to diagnose than a non-rare cancer. Broenland: “It is therefore important to make timely referrals to specialized centers. No or incorrect diagnosis gives people a lot of worry and uncertainty. In addition, treatment of an incorrect diagnosis is ineffective and can cause side effects. In the meantime, the cancer can also spread further without effective treatment. ” To optimize research into, diagnostics and treatment of rare forms of cancer, NFK discusses the results of the survey with the Dutch Rare Cancer Platform (DRCP), a national multidisciplinary group of experts on rare cancers.

Week of the Rare Cancers
In order to support people with rare cancers, NFK founded the Patient Platform Rare Cancers (zeldzamekankers.nl) in 2019. In the Week of Rare Cancers, NFK and KWF join forces to draw more attention to the platform and the need for more knowledge and attention to good diagnostics. Johan van de Gronden, director of KWF: ,, I want the survival rate for people with a rare form of cancer to increase. It should not matter which type of cancer you get, a rare form or a form that occurs frequently. With specialized centers we can really make an important contribution to this. ”

From 8 to 14 March, a patient will share his or her experience story on zeldzamekankers.nl every day. From 22 March, the KWF will start a follow-up campaign to draw national attention to rare cancers.

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