Thankyou all!!! I will try and answer a few things.
Yes it is very possible that HPV was a cause but I was told that if it was then survival is better, I have not been tested for it.
The four opps where Parotidectomy with neck disection, removal of some positive lymph nodes but know cancer in any glands at all.

Then Tonsils taken out and heaps of biopsies to try and find primary tumor. this was followed by 65 grays of radiation over 6 weeks.

Then the big one. Positive pet scan so, radical neck disection for tumor in tongue removal and forearm flap graft with vein to reconstruct tongue.5.5 cm mass removed includind margins. More lymph nodes removed all negative for cancer. Two weeks in hospital Tracyostomy.nasogastric feeding tube etc

Finally a minor opp to take a small peace off the side of my tongue to be 100% sure for pathology. all clear.

I can eat yogurt and soup type consistancy but cannot chew as half my tongue is numb and hard to control food in my mouth. My tongue only makes it to my teeth it does not stick out anymore. Hey Ive lived on protien drinks my whole life as a gym trainer so I am geting heavier as have just started back working out at the gym two weeks ago. Protien drinks make up a big part of my diet.

No more radiation indicated and chemo, no thank god! I am at an exellent hospital Royal Perth and have a full team speach, nutrition, physio, surgeons, phycologists, all very kind people. I hope this sort of helps portray my condition.

Gabe your opp was the same lenth as mine 14 hours! is it rude to ask what type of flap complications can happen? Thankyou to every one. Tony

Tony, there have been people who have posted here who had cancer back in the 1980's and are still around. Brian, the founder and administrator of OCF is a 10 year survivor. I just passed th 2 year mark myself. "It ain't over 'til it's over" commented a great American thinker (Yogi Berra).

Mr Francis Chai, Mr J C Hodges and two other ENT consultant surgeons at RPH plus Dr Andrew Lindsay. Mr Jerome Freund consultant radiation oncologist. All very kind people that saved my life. I refused chemo cisplatin and am glad I did. I up until last week knew only that I would die in two years with out surgery. Now I at least have an idea what I may have in front of me as a basic prognosis. I am gratefull they gave me some truths about the disease as apose to nothing at all and spending hours on the net trying to get half information. I have not carved this into stone but I will attempt to return to work next week (is nine weeks post opp normalish?)if work is good fine if not I now know not to waist time so to leave and move on...no time to waste wasting time I guess. Tone

Welcome to OCF Tony. You will receive warm support here as you continue to recover from a very tough journey. I also refused chemo and had a radical neck dissection plus radiation and I am happy to tell you that I celebrated 7 years cancer free last month. I do live with a very dry mouth (my major salivary glands are history) and sore throat now and then etc, but all is well compared to some.

I guess you have been told how important it is to manage your teeth professionally if your mouth is dry (which may not be the case, all treatments are different). Without the magic of saliva special care is required or decay will take over.

I wish you all the best, love and light from Helen

Hi Tony,
Good to see you have a great team of people looking after you. This information is already of great use to Mary (rugrat) posting for her sister in the same State and town as you.
I have done a lot of research and have seen photo�s of what my wrist and mouth should look like..which neither do. There is still a lot of scar tissue between the flap and tongue. Tongue stings most of the time. On my last visit (6 monthly now) was told it was leukoplakia but I am not convinced. Due to unrelated major surgery this time last year I have given it a break. Spoke to my dentist a couple of weeks ago for referral to the oral surgeon who did the orginal biopsy as I now need to get it checked.
Again and again you will read here that everyone is different. My overall recovery was good and I was lucky that I could ease myself back in to work at around 6 weeks. First weeks 50/50 in office and working from home. At any social/work occasion I was listed as special diet for quite a while and had mostly mush but got served first
No one can advise you how to live your future life but the questions you asked in your last statement were the same thoughts I had and now doubt others. For me a lot of it was determined by finances and being there for aging (glad they don�t read this ..they would be insulted) parents.
Wishing you the same as my friend Helen.
Gabriele

Thankyou everyone for the warm welcome. As everyone must be at some stage, scared of what may happen is on my mind a lot. It can paralise one and stop you living life! I dont want to do that but it gets hard like do ya keep striving build a house slowly pay it off or the like..... or rent a place and blow your money enjoying.......well anything or nothing whatever is your thing. I allways said I dont want to be carried out of work to a pallative care unit, if you get my drift. Thankyou again for reading my rambling and I am sure I will have 30,000 questions as time goes bye. Tony

Hi Tony

have you look into a support group here in Perth? I haven't had much luck.
Mary

Tony, welcome. Sorry you're here... but here is the best place on the 'net you could be. Man, you've been through it, haven't you!

DavidCPA's advice to get tested for HPV is excellent per usual. Especially as you don't smoke I'll bet my bottom dollar (US or Aussie, you choose) that's the culprit. And if so of course, your prognosis is even rosier.

Keep asking the questions, ramble all you want, and do make sure to take care of your teeth. That's very important since you're gonna be around to chew for years to come.

David 2

Hi Tony
My husband left me two weeks after my treatment ended so I can symptathise with what your going through. Having to cope with the cancer, the treatment & a relationship breakup is tough. Im 5 months down the line & all I can say is a day at a time & REST. Much harder to do than you think especially when youve got to work. I returned to work 3 weeks after tx which was way too soon & oh boy did I suffer! The saving grace is this website & all the wonderful people on it.

Yes I am doing my best with teeth care, floss daily and use interdental brushes brush really well once a day with a high fluride tooth paste and 2-3 light brushings to freshen my mouth. I avoid all drinks with citric acid and drink soda water through out the day to keep acid down and my mouth not dry. The hardest part is opening my mouth, it only opens like one finger thickness wide but I know it will improve.

I and some consultants suspect that HPV could be a cause. What I dont understand is even if I get a test and it is positive apart from a better prognosis can I do anything to hurt the virus so as to avoid it doing the same again. Would a vacine help once infected???

Gabe I hope that flap issue is nothing, and there is that wait again hey.

With where I am at with my condition do you think they will do another PET scan and if so when. My guess is they will wait long enough to be able to see anything that could develop. Like a year???