Since my diagnosis, I have been surprised by how little is known about chordoma. Even my GP, who has worked in general practice for many years, had very limited knowledge of the disease.
More research is needed into surgical options, the different treatment pathways available to patients, and what happens when surgery is not possible or is not an acceptable option for the patient. Decision makers also need to understand how stressful the lack of knowledge, clear guidance, and treatment options can be for patients and their families.
In Australia, this stress is made even greater by the fact that there is no proton beam therapy centre, meaning some patients may need to seek treatment overseas.
I have found that there does not seem to be a clear or consistent pathway for doctors to follow when treating chordoma. I have been referred from one specialist to another, and I am now in my fourth month since being diagnosed with sacral chordoma, with no treatment plan in place. I have had to stop working, and the uncertainty about what comes next is affecting both me and my family.
It would be very helpful to have clear chordoma-specific guidelines for Australian surgeons and multidisciplinary teams, and for these to be widely distributed to doctors and medical practices across the country.
I am very grateful to the Chordoma Foundation for the information, guidance, and reassurance it provides to patients during such an uncertain and difficult time.