Facial abnormalities
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). Marinka: '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.’ In all, Marinka met 173 children.
Asymmetry
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. The results of that follow-up study will hopefully be published soon. 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.’
The scientific publication can be found here: Hol MLF, et al. Facial deformation following treatment for pediatric head and neck rhabdomyosarcoma; the difference between treatment modalities. Results of a trans-Atlantic, multicenter cross-sectional cohort study. Pediatr Blood Cancer. 2023 Aug;70(8):e30412.