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Less facial deformation in children with head and neck tumors

She worked in London, Paris, and Florida and personally spoke with 173 children included in her study. Marinka Hol is a PhD student in the Merks Research Group and studied facial deformation after treatment for rhabdomyosarcoma. 

Marinka Hol is an ambitious PhD student in the Merks research group. She is also a 4th year trainee as an otolaryngologist at the UMC Utrecht. This combination makes her want to become a head and neck surgeon at the Máxima Center. She is very ambitious and already doubly busy. Nevertheless, she took the time to explain a publication that is part of her doctoral research on facial abnormalities after treatment of a tumor in the head and neck region. 

Facial abnormalities  
Marinka: ‘In addition to chemotherapy, children with rhabdomyosarcoma in the head and neck receive local treatment of the tumor. This can be radiation therapy (proton therapy) or surgery or a combination of both (AMORE therapy). The purpose of this study was to see how common facial abnormalities are and whether there is a difference in the type of treatment. All therapies have the same survival rate, so for each child, the one with the least unpleasant long-term side effects could be chosen. As a child grows, so does the face, and we see many children with an asymmetrical face as a result of treatment. We were hopeful: which treatment would cause the least facial abnormalities?’ 

The research involved collaborations with Great Ormond Street Hospital in London, Institute Gustave Roussy in Paris and the University of Florida Proton Therapy Institute in Jacksonville, USA. Marinka: ‘I worked in London, Paris and Florida for several months to see all the children in the study in person. It was a very special experience, fun and most of all educational! It allowed me to see how all these children are treated in the different centers. In all, Marinka met 173 children. It was often pleasant, she says, but sometimes very sad to see what life is like for these children with facial abnormalities. ‘One of the children who will always stay with me is a 16-year-old boy who had already undergone several surgeries for his facial deformities. All with disappointing results. He talked about how he had learned to live with it, but also about the functional problems. For example, he cannot eat a hamburger because he cannot open his mouth properly. So his dream was to be able to go out and eat a hamburger with his friends.’ For Marinka, this was all the more reason to do more research into less disabling treatments. 

What did this large-scale study reveal? Marinka: ‘First of all, it confirmed that the problem of facial anomalies is a big one: all children with a tumor outside the eye socket have an asymmetrical face. When choosing between the various treatment options for rhabdomyosarcoma of the head and neck, many things are considered, including the expected damage. Often, the only difference is in facial growth. With the results of this study, we can see which treatment actually gives the least amount of facial abnormalities. For example, for children with orbital tumors, the AMORE therapy resulted in the least facial abnormalities. For children with parameningeal tumors (rare tumors near the brain), proton therapy was the best treatment with the least facial abnormalities.’ 

Limit damage 
With the results of this study, further research is now being done to further limit facial damage. Marinka: ‘We have used these results to reduce the radiation dose to the facial bones, for example. This is the follow-up study, which will be published any time. I also hope to include this study in my doctoral research (PhD on April 12, 2024, ed.). With such concrete results, we can further reduce the damage to facial growth in children, especially when treating young children. Because an asymmetrical face is disabling for many children and adults.’