My older daughter had a second ependymoma episode perfectly removed by surgery. She had a first local radiotherapy 2 years ago (tumor under the cerebellum). Second tumor was located closeby but in the cerebellum.
Radiotherapists propose a total cranio-spinal treatment.
We hesitate greatly on the protocol (would protontherapy be less detrimental ?)
Thank you for your precious help (we have to take a choice shortly...).
Dear Thierry,
some papers to check out:
Article Long-term follow-up of young children with brain tumors afte...
Article What are the long-term effects of treatment on survivors of ...
Article Paediatric brain tumours: A review of radiotherapy, state of...
But you know, sometimes we just have to trust others.
Do you mean : trust the radiotherapists ? The thing is : we are in a hyper rare illness form with no stats in terms of outcomes. So we are in a foggy area. And questions such as : "is it better to live with heavy disabilities?" "How many chances have we got to get a positive outcome following this heavy treatment ?" "where shoud be the limits of treatment (regarding the benefits vs risk balance) ? have maybe different answer wether you are a therapist or a parent... And maybe these questions have no answers...
Very true, this is a dilemma. We did some research on children with leukemia a very long time ago. Although they got some adverse effects of the treatment they were happy to have survived and adjusted well to life, in case i remember correctly what i later read.
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