No more long-term checkups (10 to 20 years) after a neuroendocrine tumor (NET) has been removed from your pancreas. This would prevent anxiety and worrying about whether or not the tumor will return. And patients would have to visit the hospital less often to, for instance, have scans taken. Researchers at UMC Utrecht are investigating whether genetic characteristics of the tumor can help to predict how the tumor will behave, resulting in a new, less burdensome follow-up procedure.
Neuroendocrine tumors arise from cells that produce hormones and can occur anywhere in the body. Every year, about 200 people develop a NET in the pancreas (pNET). It can be benign or malignant. Most of the time, the tumor is surgically removed and will not return. But in 20 to 40 percent of people with pNET, the tumor behaves malignantly, and will return. Because it is difficult to predict how the pNET will develop, all patients will be monitored annually for the next 10 to 20 years after they have had surgery. Even if they had a benign neuroendocrine tumor in their pancreas.
Unnecessarily frequent and long
In theory, people with benign pNET need less frequent and perhaps less prolonged monitoring. Now, however, the expected behavior of the tumor is not taken into account to determine the amount of checkups. People with a benign tumor are currently being checked unnecessarily often and for a long time. Every year, they will have to come to the hospital and will be worried that the pNET has returned. This is of course extremely stressful.
“We look at the overall picture to decide if fewer checkups are possible and desirable”
Genetic testing
Previous research shows that certain genetic aspects of a tumor can predict its behavior. This can be used to estimate how likely it is to return and whether it will be malignant. The researchers at UMC Utrecht will now see if this could help to reduce the period in which people with pNET will need to be monitored.
They will examine what genetic features are present in 800 pNET tumors. What genetic traits help to recognize benign pNETs? Do those characteristics also correlate with no metastasizing? Subsequently, they will create a model to predict whether or not the tumor will return. At the same time, they will evaluate whether the costs of genetic testing outweigh the savings realized from fewer scans and hospital visits.
Overall picture
The researchers will also ask patients whether they would prefer to have fewer checkups if their tumor turns out to be benign after surgery. “Then, we will look at the overall picture, including costs, accuracy of the tests and patient preferences, to decide whether fewer checks-ups will indeed be possible and preferable,” says lead researcher Lodewijk Brosens, associate professor at UMC Utrecht.
“Based on the moleculary profile of the tumors , we will make our first prediction model. With this, we will soon be able to inform pNET patients about the probability of the tumor returning and if their follow-up procedure may be adjusted. If the overall picture turns out to be positive, we will thus eventually be able to do fewer checkups with pNET patients.”
Thanks to this research, the aftercare program in pNET can become more personalized to the individual patient. KWF Dutch Cancer Society has granted Lodewijk and his team over 1.6 million euros to carry out their research. The project will take five years and is expected to start in the course of 2025.
New standard?
After the study will be completed, the shorter checkup procedure in pNET patients cannot immediately become the new standard procedure. First, a follow-up study comparing the new shorter procedure with the current, long-term variant will be conducted.
This is necessary to make sure that the shorter procedure is safe and does not compromise the patients’ quality of life. “After this, we hope to be able to indeed personalize patients’ follow-up treatment in daily practice, based on the molecular profile,” explains lead researcher Lodewijk Brosens.
