Cancer, a rare disease?
It may come as a surprise to many on this International Rare Disease Day (February 28), that a significant number of cancer types fall into this category. In fact, for cancers that are rare, the risk of death is higher. This is simply because there is relatively less knowledge and treatment experience with these types of cancers. A complete DNA -analysis can help to better understand the disease.
Cancer is the leading cause of death in our country, but it comes in many forms. There are over 200 different types of rare cancers. One in four patients has a type of cancer that is considered rare, meaning it occurs in fewer than six out of 100,000 people each year.
This often makes it more complicated to get a clear picture of what is happening, and it can take a long time to form a diagnosis. It may take months for a patient to find out what cancer they have. Additionally, there is less known about the effects of possible treatments and whether a standard treatment is available. Often, there is none.
Hans van Snellenberg
“We know that three-quarters of such rare cancers are genetically determined”
What we do know is that for three-quarters of these rare diseases, genetics play a key role. DNA -research can therefore be the key to making the right diagnosis and choosing an effective treatment. This is true for sarcomas, or ‘soft tissue’ cancers. Each year, 1,400 patients are diagnosed with this rare disease, which accounts for about 1% of all diagnosed cancers. In 2023, nearly three hundred people died from sarcomas.
A complete tumor DNA analysis can help sharpen the diagnosis and create the best treatment plan, as recent research from the Antoni van Leeuwenhoek shows. For a quarter of the sarcoma patients in the study, the analysis had immediate benefits, such as a better diagnosis and finding additional treatment options. Moreover, it allows for a complete molecular picture to be obtained in one test, rather than conducting several separate tests. It may cost a bit more, but it works much faster and is more comfortable for the patient. Additionally, by systematically collecting data from all sarcoma patients, we are gaining more information for better treatment of future patients.
Hans van Snellenberg
“DNA research can be the key to making the right diagnosis and choosing an effective treatment”
Cancer is not a disease that announces itself at the front door. It can take years for the first symptoms to surface. That’s why it’s essential to gather all relevant information. This is especially true for rare cancers or cancers where the primary tumor is unknown. Not to mention cancers in advanced stages, where time is a significant enemy.
Returning to the example of sarcomas, in Sweden, England, and Germany, a complete DNA analysis is standard in the diagnostic process for this type of cancer. In the Netherlands, we are not yet at that point, for various reasons. A day like today motivates us even more to implement changes quickly.
Hans van Snellenberg, managing director Hartwig Medical Foundation
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Cancer is caused by DNA mutations. There are an increasing number of drugs available that act on specific errors in the DNA of an individual patient’s tumor. A drug that doesn’t fit, like a key in a lock, will not work, while the risk of side effects remains.