My story is one I am still trying to comprehend myself. It started with a sore shoulder. I knew something was not right but did not know what it was. After a lifetime of back problems, I started seeing my Osteopath. After 5 visits there was no improvement so I went to a Chiropractor but there was still no improvement. I went to my doctor who ordered a X-Ray, blood tests and then an ultrasound which all came back inconclusive. Then a small lump appeared to the right of my throat at the top of my sternum. There was no pain at all and I did not think much of it.
A couple of weeks later I met a doctor friend who advised me to get a CT scan straight away and that’s when everything got really serious really fast. I was lucky enough to be living in Sydney and close to the best medical treatment in the world and was referred to a senior surgeon at RPA who in turn referred me to Prof Cao. This is about the time your life goes on hold and you start going for test after test firstly to figure out what the issue is and secondly to prepare for the upcoming surgery.
The massive tumour was between my right clavicle and sternum and had been pushing my clavicle into my shoulder. So the pain was in my shoulder and not where the tumour was and this is why the ultrasound and X-ray had been inconclusive, they were looking in the wrong place.
What I had was a Chondrosarcoma (bone tumour) which is very rare but I also had the aggressive version which is more rare again. This type of tumour does not respond to chemotherapy or radiotherapy so the only option was surgery. If you get this in your limb then they amputate your limb. I had it in my chest so they resected (partially removed) six ribs, my sternum and both clavicles in one piece. I now have the video and it can only be described as having a phone book removed from your chest.
I was told the tumour was too large, growing too fast, was too close to the blood vessels going to my brain and there was no cure or treatment other than surgery so my odds were very slim.
I was in ICU for four days after surgery and in the hospital for three weeks for recovery. I had six drains in my chest and back to drain the fluid and the hole in my chest was filled in from grafts they took from my right side and my back.
It took two and a half weeks for them to do the pathology on what they had removed and finally tell me they had got it all out with clear margins. Even then I did not feel like I was in the clear as any leak would mean the cancer spreading and reappearing somewhere else.
On release from hospital I came off the medications very quickly (within a week) and I was able to drive four weeks after surgery. I was swimming 6 weeks after surgery and I had weekly physio for about 6 months so now have 90% of the function in my right arm again. It would be fair to say my life is back to normal now though I do need to be careful with the activities I undertake.
I also managed to keep the whole experience a secret from my work colleagues and customers and for that reason I have asked for this story to remain anonymous.
If you are reading this because you are going through the same (or similar) thing then I am sorry and I wish you all the best. It is your body and you must take charge, take action to seek the best possible advice.
At some point you must also release yourself into the hands of the medical professionals and let them take charge. For me this was easy as the alternative was not acceptable.
The waiting game was the most difficult, waiting for test results, waiting for a slot in surgery, waiting for the pathology results and all I can suggest here is to keep yourself busy doing other things. Even now, a year after surgery, I go back for my tests and await the results.
I am still in awe regarding what was done to me and what was done for me by Prof Cao and his team. The human body is remarkable, the medical science is extraordinary and there are no words to describe what Prof Cao did for me. The surgery took 12 hours, 8 hours to extract the tumour and 4 hours to put me back together again. That is a marathon effort in anyone’s book.
Prof Cao made it clear I was his responsibility and promised me he would do “whatever it takes” to get the tumour out of me and give me the best possible medical care.
I have nothing but praise for Prof Cao, his team and the entire staff at RPA. I have been given a second chance and will be forever grateful.