Australian patients with Chordoma would really benefit if a proton therapy facility was available in Sydney.

Pediatric chordoma and the role of proton therapy

Pediatric chordoma is a rare type of bone tumor that develops from small remnants of the notochord, a structure present in early fetal development. Chordomas are rare, affecting about 1 in 1 million people worldwide, and only approximately 5% of all chordoma cases are in children. With modern treatment options, the outlook for children with chordoma continues to improve.

Because chordomas tend to develop in complex areas like the base of the skull or spine, a team of specialists is needed to carefully plan treatment. Surgery is often the first step, aiming to remove as much of the tumor as safely as possible. However, because complete removal can be challenging, additional treatment like radiation therapy is usually recommended to help prevent the tumor from coming back.

The key to an effective radiation treatment plan is delivering a high enough dose to target the tumor while carefully limiting exposure to surrounding healthy tissues and critical structures. For children and young adults, reducing the amount of radiation that reaches the rest of the body is especially important to lower the risk of long-term side effects, including secondary cancers.

Because of its precision, proton therapy is often the preferred option for treating chordoma. It allows for high doses of focused radiation to the tumor while minimizing unnecessary exposure to nearby healthy areas.

To ensure the best outcome, it’s critical to work with a team of doctors, surgeons, and radiation oncologists who can provide personalized care and manage all aspects of your child’s treatment. Connecting with other families and support groups can also provide comfort and help you feel less alone on this journey.

Getting a chordoma diagnosis can feel very overwhelming, but it's important to know that you are not alone. We are here to support you every step of the way. 

For more information: https://www.chordomafoundation.org/children-and-young-adults/