My son, Brodie, aged 21yrs old, started having vision issues back in September 2022, which led him to book in to get his eyes tested. Brodie was then referred to see an eye specialist as there was something picked up in the examination. Upon seeing the eye specialist, he said that Brodie has Palsy of the right eye and needed to go straight to the emergency department for urgent review.
After MRIs, CT scans and blood work, a week or 2 went by and Brodie was called into the hospital to deliver the news that they in fact, had found a mass sitting just outside the brain behind the right eye and that he would need to see a neurosurgeon. An appointment was made for the same day and then we were told that surgery (craniotomy) would need to be performed to obtain what the mass was. The Dr advised he had his suspicions as to what it was but didn’t want to say anything until it was confirmed. The surgery was booked in for 20/10/2022, the day after Brodies 21st birthday.
The afternoon before the surgery, Brodie received a call confirming they were cancelling the craniotomy as they believe there is a less invasive way and would need to speak with an ENT surgeon.
After being referred to an ENT neurosurgeon, he advised he was able to perform the biopsy, but it would be at a cost of $50,000. We were so shocked about the cost but didn’t have this sort of money lying around just to perform this biopsy. We then went back to the original Neurosurgeon, who advised of another surgeon and arranged to speak with Dr Bhrinda Shivralingham from Chris Obrien Life House, who saw Brodie within a week. She confirmed she could perform the surgery alongside an ENT to obtain some of the mass for biopsy. But given the location, they wouldn’t be able to get all of it out. This was at no cost at all. The surgery was booked and went ahead on 23rd December 2022. Surgery and biopsy went well, and Brodie was home on Christmas day to recover.
Then the long wait for the biopsy results. It was a six week wait when we received the call to confirm Brodie's diagnosis of the Chondrosarcoma skull base in the right cavernous sinus lesion. It has been graded 2/3. This is classified as a rare, aggressive bone cancer. And the recommended treatment would be Proton Beam Radiation, but unfortunately, this is not available in Australia. There is a centre being built in South Australia but it won’t be ready until early 2025.
We were then referred to Dr Patanjali, who is now Brodie's oncologist, and she also has confirmed for the best long-term treatment, Proton Beam Radiation is what is needed to treat Brodie. She explained the difference between Proton V Photon (Photon is the treatment that is offered here in Australia.)
Proton is a direct hit with a high dose of radiation to the tumour, whereas the Photon releases a high overall dose to the whole area, in Brodie's case is the brainstem optic nerve which could cause more damage and other areas of the brain.
Due to Proton not being available in Australia and we were advised we could apply for financial assistance through MTOP (medical treatment overseas program). SO Brodie could travel overseas to have this life-saving treatment. There is a centre being built in South Australia but it will not be ready until 2025.
Dr Patanjali has spoken with PSI (Peter Scherrer Institute) in Switzerland, who confirmed they were able to treat Brodie using a proton beam and put together a treatment plan for Brodie. Dr Patanjali also structured a treatment plan using Photon so the plans could be submitted with the application to MTOP.
After several weeks and back-and-forth emails between MTOP and Dr Patanjali with further questions, they released an email on Friday, 14th July, advising they had declined Brodie based on him not meeting all four criteria.
The criteria Brodie doesn’t meet is this:
A) the proposed overseas treatment or an effective alternative treatment must not be available in Australia in-time to benefit the applicant.
Yet there are multiple statements in the letter that outline the benefits of Proton treatment would be to Brodie.
One view stated that proton beam therapy is not available in Australia and is a recognised indication for base of skull chondrosarcoma. It is very reasonable to ask for a PBT opinion for this disease in a young man.
in principle PBT is accepted for this disease
The two reviewers expressed opposite opinions on three of the four criteria, however the patient has an indication for which MSAC 1638 acknowledges proton therapy and for that reason as well as the fact that this young patient may well have a better outcome if treated at an international centre of excellence for these tumours, the College supports referral for proton therapy
Another view stated that the patient is 21, otherwise well, with a partially resected skull base chondrosarcoma arising from the right parasellar area and involving the right orbit. Biopsy and surgery have confirmed the diagnosis but excision is not complete, as is usual with these tumours, as they invade critical normal structures. He has been assessed by PSI and recommend treatment to a total dose of 70Gy in 35 fractions. RANZCR.
The PSI data is consistent with other series with an 8-year overall survival of 94% and a local
control rate of 90%. His young age and the relatively small volume of residual disease put him into a favourable category.
The comparison photon plan provided by Lifehouse is good but cannot avoid high doses to vital structures such as the optic nerve and chiasm, other cranial nerves and the brainstem. A scanned proton plan such as would be delivered at PSI will give lower doses to many of these structures, and this is particularly important in such a young patient with a good prospect of long-term survival.
I am lost for words as to the amount of times I have read throughout the decline letter how many people were in favour of the treatment and how this treatment is the most effective for this sort of cancer, given the location. Yet financial assistance will not be approved?
Dr Patanjali will be appealing the decision as she believes this is the best long-term treatment for Brodie, but this process can take up to 3months. It has already been 9months since the tumour was discovered. So now we look at plan B options and that is to fund the treatment ourselves.
We are hoping that Brodie's story can be shared to spread the word of helping my son get the treatment he deserves that will give him the best option for long-term life.