December 2012
1 Kudo
Hi Silly,
I had my surgery in January 2010 and 7 weeks of radiation after that. During the first year, I was having MRI's quite regularly because I had so much pain. They were concerned there was more, but nothing was found. There were microscopic patches still there after surgery, but after radiation they vanished. I actually had an MRI a couple of days ago of my head, and a CT scan of my neck, lungs and liver. First scan in 12 months, so I have everything crossed that the results are good.
All of my surgery and treatment to date has been carried out at the PA Hospital under the public system. I was very fortunate that I had so many specialists there looking after me - ENT surgeon was Ben Panizza, Plastic Surgeon was Dan Rowe, and Oncologist was Sandro Porcedu. As of last week, I am now under Ben Panizza privately, won't need to see Sandro unless I need more radiation (which I have been told is very unlikely). If the cancer comes back in my face, I cannot have any more radiation, too much damage already.
Incidentally, I still have permanent pain in my face due to nerve damage and removal. Am on permanent medication for that, which sometimes works and sometimes doesn't.
Also, outside of the public system, I will be having scans 6 monthly instead of 12 monthly. It's just too long.
Sorry it took me so long to get back to you. I have had quite a busy week
Ducksnutts
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September 2012
1 Kudo
Hi Silly,
I also had Sandro Porceddu as my Rad/Onc for treatment after surgery. I was diagnosed with AdCC in January 2010, and was lucky enough to have a team of awesome specialists at the PA hospital looking after me. Ben Panizza was the ENT surgeon, Dan Rowe was the plastic surgeon that had the job of patching up (total of 13 and a half hours of surgery in one hit), then Sandro took over with the radiation treatment. What I would like now is a GP that I can go to that has some knowledge or experience with AdCC. I can be slightly paranoid at times over varying pains, etc and would like to be confident that a GP has enough knowledge of this cancer to give the right advice as to whether I need to worry or not. Do you know of any GP's within Brisbane (preferably south side) that you could recommend?
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