One third of people with a rare form of cancer first receive one or more incorrect diagnoses. In the the Week of Rare Cancers attention is drawn to the 130,000 people who have to deal with rare cancers, and therefore also with these types of problems. Every day, patients share their experience on the Rare Cancers patient platform.
One of those people is Birgitta, she had to wait ten years before she was finally diagnosed with cutaneous lymphoma. I kept getting a different diagnosis at the GP. ‘
Eventually she got a spot on her skin where more complaints were associated. A biopsy of this place showed within one day that it did not look good. The doctor did not yet know what it was exactly. “It was said to be cancer, but for clarification they would send me to a teaching hospital.” She was referred but was not told how long the waiting time was. “I lived in fear for six weeks,” said Birgitta.
Delay in diagnosis has major consequences
Birgitta is not the only one whose diagnosis has taken a long time. The Dutch Federation of Cancer Patient Organizations (NFK) examined 2027 people who have or had a rare form of cancer. This shows that a third was initially misdiagnosed. Four in ten of these people have even received treatment, therapy, or medication for this misdiagnosis.
A cancer is considered rare when less than 1000 patients a year are diagnosed with it. Of all cancer patients, 1 in 5 suffers from such a rare form.
Referral usually via a general practitioner
Many patients first go to the doctor with their complaints. Only half will then be referred to a specialist within two weeks. ‘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.
More successful treatment at an early stage
According to NFK, it is very important to detect cancer at the earliest possible stage. This way you can prevent the disease from spreading and the chance that the treatment will be successful is greater. The survival rate of people with a rare cancer is now 15 percent worse than if you have a common cancer, and this rate continues to grow. According to the organization, the delay in making a good diagnosis could be one of the reasons for this.
Treatment in University Medical Centers
The federation, together with the Dutch Cancer Society, is calling on the group of patients with rare forms of cancer to be examined and treated in specialized centers, preferably University Medical Centers (UMC). National agreements have already been made on a number of rare cancers such as head and neck cancer and sarcomas. For lymph node or blood cancer it is also agreed that each patient is discussed with a specialized center.
The polls show that 51 percent of people with rare cancer are treated in a UMC. NFK therefore wonders whether all people with these rare cancers receive the specialized care they need.
Waiting times for an outpatient visit do not meet the standard
After the original suspicion of cancer, Birgitta’s biopsy was therefore examined in another hospital. She had to wait a long time for that, no less than six weeks. ‘I’ve been sitting at home in a kind of panic waiting for the phone to ring. When you are diagnosed with cancer, you start to wonder whether you can die from it. I had no idea when I would get the answer. ‘
However, the professional standard states that a diagnosis must, in principle, be made within three weeks of the first outpatient visit. In case of referral, the standard again applies to this new hospital. For almost a third of the respondents, this waiting time was longer than four weeks. Eight percent of those people indicate that it even took six months or more.
‘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, ‘says Broenland.
Lack of centralization and humanity
According to Marga Schrieks, Project Leader Patient Platform Rare Cancers, the problem is that there are no specialized centers for many forms of rare cancers. She indicates that this is precisely what is important. ‘More extensive diagnostics often have to take place. A rare form of cancer is more complicated in terms of problems. You often do not get enough information with normal diagnostic tests and by doing additional research you can go deeper into the disease. ‘
According to Birgitta, the centers are now also very limited in terms of occupation and budget. She was always treated by different doctors and had no fixed point of contact. ‘Your cancer is sorted out by super specialists who work very hard to see what happens to the cancer cells. As a result, they only have less time and space to consider what this means for the patient themselves. ‘ It is also important to get help to process the diagnosis, to meet fellow sufferers and to acquire good information, says Birgitta.
Plans for the future
‘The centers see that this is difficult, but they also do not have the support to do anything about it. These small departments are often cut. ‘ Birgitta suggests setting up rare cancer clinics so that people have a place where knowledge and strengths are bundled. ‘There was too little attention to what it was like for me or how I could deal with it.’ In this way she hopes that more direct contact will be possible. Schrieks indicates that he is also discussing this idea with expert professional groups. ‘We are going to look at how we can bundle knowledge.’
To tackle these problems and to optimize the treatment of rare forms of cancer, NFK will discuss the results of the poll with a national multidisciplinary group of experts from the Dutch Rare Cancer Platform.
In addition, NFK has in 2019 the Rare Cancers Patient Platform established. NFK and KWF are joining forces and the organizations are asking more attention together this weekt for the platform, the need for more knowledge and the importance of good diagnostics.
Survival rate must go up
Johan van de Gronden, director of KWF, wants 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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