Patient Advocates

In early 2010 I was experiencing breathing problems which my doctor diagnosed as asthma. Subsequent treatment for this did not help so I had a CT scan. The scan showed a large mass inside and behind my trachea and a biopsy revealed I had adenoid cystic carcinoma of the secondary salivary gland at the base of my trachea. This tumour does not respond to chemotherapy and the specialists at Royal North Shore hospital in Sydney informed me that an operation to remove this and then treat with conventional radiotherapy was too difficult within Australia. Radiotherapy alone to remove the tumour would damage my spine and other vital body organs nearby.  
 

After consultation I was sent to see a world-renowned doctor in Philadelphia who could do the operation.  However, after tests he said the operation was not possible without my losing a lung and significant risks. Instead, I was offered proton therapy at the Roberts Proton therapy centre there which had opened just months previously. Whilst preparation for this was undertaken, I had two weeks of conventional radiotherapy followed then by six weeks of proton therapy. The treatment was painless and although I was fatigued, I was able to return to Australia shortly after the treatment finished.  
 

A CT scan a few weeks after my return showed no evidence of the tumour. I have minimal side effects only really a slight sore throat and having to eat meals slower. I really was in the right place at the right time as proton therapy has made a massive difference to my quality of life over the last fourteen years compared to the alternative of conventional radiotherapy alone. 

If you would like to share your story feel free to contact us here.