My name is Tony and am new to this, so a big HI!!! I am 45 years old non smoker light drinker Fitness trainer for 25 years. Have had four operations and pet scans ct etc resulting in 9 weeks ago I had a 5.5cm mass removed from the base of my tongue with a forarm graft implanted to remodel my tongue. Cant eat but I can talk. I am scared as, that this cancer will return and cant get much of a prognosis. The most acurate info I got from my surgeon that I am greatfull off was. If you live 2 years you can perhaps look at being a long term survivor, if there is anything important you want to do now is the time as you have definatally got 2 years of good health. Any one else struggling in a similar way. or everyone may be my guess. Havent gone into how bad the opps where as I guess you all know. I have lost my parter for 5 years as she could not handle any more stress in her life and will try and go back to work in a week and I dont know how that will go. Not feeling on top of the world!!!
Tony

Welcome to OCF Tony!

You've come to the right place. There are a lot of folks here that have been through a lot and are such an inspiration to us all. They're beating it, so don't let anyone talk ya down!

Tony,

Two years is just a bench mark. It's an arbitrary date set out in the future that says if you have made it this far you stand a better chance of no reoccurance.

Its a fairly meaningless date as we all plan on making it two years at the very least.

Simply put, every day you put behind you lowers your chance of a reoccurance, and the more of thaos days you can string together, the better your chances on no reocurane.

We all hate to say welcome but we are glad you found OCF and have posted on Introduce yourself..
Got your email in response to mine and I will post here tomorrow morning as it is now evening here. Your already have couple of great responses and no doubt will have more when I look in the morning.
Gabriele

Hi Tony!

Welcome to OCF! Everyday is a blessing in my book, praying you have many years ahead of you! Sorry to hear about your partner.

Tony,

Asked to be tested for HPV. There is a 70% chance you will test positive and with that comes a less chance of recurrence.

Tony,
Were any of the lymph nodes removed from your neck cancerous?
Are you going to have radiation (and/or Chemo)?

Tony, I was given up as a dead man at least 3 times and here it is 3 years later and I am still among the living and doing more than most, even the younger healthier ones. No Dr that I have heard of can give you a day or date that you have to survive. If I payed attention to the Drs words, I would be at most an unhappy character. Keep an upbeat great attitude and live as if nothing was wrong with you and that whatever was is getting beaten by you and your body. Welcome to our home and read some of the posts of the survivors. Go for the gold man and live that way too. I also ignored a lot of surgeries I was told I needed. I have trouble eating anything but I force it. Ggod luck.

Hi Tony,
Sorry to hear you are going through so much but some of your issues should be resolved in time. If you can answer some of the questions it will help others here to help you. (see davidcpa�s and don's question's). Your major surgery was not that long ago but can you please advise what the 4 operations were? How are you getting your nourishment at the moment? I could not eat anything that was not liquidised but then later could eat roughly pureed and after that could introduce other soft food. Now I am happy to say I can eat almost anything. As you can see by my signature it is nearly 4 years since my operation and I do not understand the statistics that the surgeon is giving you. In the early days I used to beat myself up about them too but with all I have learnt here I know that my use by date is not dictated by statistics! Are you seeing a team of people, how often are your visits and are they and was the surgery at a CCC (Comprehensive Cancer Centre). Sorry to ask so many questions it all helps to reply to your concerns. Jim's advice is always worth reading.
Gabriele

Hi Tony,

You're from Perth? So am i. May I ask who's your dr/specialist?

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???

Tony, in regards to your mouth opening only 1 finger wide. Thats called trismus or better known as lockjaw. Yours is a severly restricted opening, I know cuz mine is the same width. This is something that you will want to work on right away after you ask your doc. You will need to do exercises to help your limited opening. Stretch your mouth open as wide as possible several times per day and hold it for several seconds. It will not improve unless you work on it. Make sure you ask your doc about doing any stretching exercises before you start, you dont want to tear something that is still healing.

Im not a HPV expert like Brian or Davidcpa but I do know that a vaccine is not going to help. HPV means your chances of recurrance are less but it does not change how you are treated.

Here in the US, PET scans are usually done at least 3 months post treatment as long as there isnt swelling. That would give a false positive. Then we usually get them every 6 mo before it goes to yearly. Not sure how frequently its done where you are. With the big surgery you went thru, there could be swelling for over than 6 months.

Thankyou Christine, that sort of knowledge slips through the cracks with all the other stuff you are getting told from 28 diferent directions! I will ask my Doc and start stretching. I will ask about PET scanning as a little time goes by. I pushed for a second PET after first surgery. They where not going to do one for a few more months but I pushed a bit and that scan found the primary tumor in my tongue!!!
Tone

Tony,

Actually the verdict is still out on whether or not the vaccine may help to prevent future infections, even at our age. Depending upon your active sex life, it may be worth pursuing. If I were single I would get the series of shots but since I am a faithful 20+ year married old fart whose wife now gets regular HPV "checkups" I'm passing.

When I posted that you should get tested I think it was in response to your mental state post Tx and all I was suggesting was that if you tested positive it may (certainly did for me) give your mental outlook a boost.

[quote=Tony Australia]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???[/quote]
When I first came on these boards in 2006, the husband of one poster, Gail Mac, was taking part in a Phase 1 (earliest) trial that Johns Hopkins was doing to develop a therapeutic vaccine that could help patients previously diagnosed with HPV shed the virus more easily upon any re-exposure. A researcher at Hopkins (now at Ohio State U.), Dr. Maura Gillison, was a leader in identifying HPV as a cause of oral cancer (in large part due to research support from OCF), and the tumor taken from Gail's husband was among the earliest -- at least among participants on these message boards -- to be identified as HPV+.

Here's a thread about it, and a follow-up. I don't know where things stand now, though. (This is different from Gardasil, which should be given prior to any exposure to HPV -- hence the targeting to teenagers before they are sexually active.)

Aside to Tony: I love Perth. We lived in the Middle East for a number of years and have some very good British friends from those days who made Perth their next stop -- and are still there. We visited them in 1993, and I'm hoping to get back there next year.

I hope all is well for you. I just finished my 2nd week of radiation and the side effects are crazy already. I was told by my doctors that there is a 50% chance that i will make it past 5 years. And me being 25, I didn't like hearing that I might not make it to 30. But like everyone is saying, don't listen to what docs say right now. Just fight for what you want. Docs told me I wouldn't be talking for 6 weeks to 3 months, and when they plugged my trach, i was talking pretty good, just couldn't say my ls and rs. But now its getting worse, cuz of radiation. But I know it will get back to getting better.

Good luck with your journey. I cant imagine what it would be like to lose your significant other. But I do have to say that the people on here are so caring and supporting. Even though people live miles apart, they still support you like you are their neighbors and sometimes family!!

I'm sure Brain can give a better response but I think Maura's research kind of died when she left Hopkins. I also understand that there have been other attempts to do essentially the same thing that Maura was trying to do to boost the immune systems response in a previously HPV exposed patient but they have all been unremarkable. I have talked extensively with Dr Anna Guiliano, HPV researcher at Moffitt. She and I have been on TV together and also traveled to the CDC where we both testified on behalf of the male Gardasil vaccination program. She is the one doing the research and testing for Merck and she has told me that if she were me and I had an active (multiple partners) sex life that she would get the shots.

Welcome Tony
the worry is natural...we've all been through something pretty intense. And it would be nice not to have to go through it again!

Stay as positive as you can and take the stress out of your life (where possible!)

cheers
jon
(and go the socceroos!)

Here is a bigish question, does anyone know what skeletonization of the Trapezius nerve means and as I do a lot of weight training can this make it better or worse? My specialist described it as hanging in the wind and may get better, that was it???

Thank you all so much for your compassion. It is amazing to find you all that have been through so much and are still going through intense things as we all know it doesn�t stop at one operation. I have a million questions and I feel I am in the right place to ask without judgement. After all it is said "the only stupid question is the one you don�t ask" I like that one. I will learn more where to post and how things work. You all have my offer to personal e- mail me. I don�t check my P.C every day but would always try to get back to you.
Kindest regards
Tony

Trismus getting worse! does any one know of other treatments??? botox, cortisone stretch while sedated, anything! Have seen the hospital physio and she srtetched my mouth last week and have tried at home with tongue depresors. The pain is the worst I have had from everything including the main surgery and my mouth is geting worse. I bought a tiny tooth brush but if I lose one more mm I wount get that in inside my mouth. it also is starting to affect speach. Teeth exactly 1mm apart at full stretch! Help!
Tony

Tony, trismus is something you must contiue to fight everyday. Keep doing the exercises and use the tongue depressors several times per day. If you take a hot wash cloth and place on your face before you stretch, it will help loosen the jaw muscles. Since it is painful, take pain meds prior to exercising too.

My doc advised me to stay away from botox since that is just a shot that paralyzes muscles.

There are a couple devices that are on the market to help with stretching your mouth open. Problem is that your trismus is so bad you probably couldnt get the device into your mouth.

Try using what hospitals give to patients to get a tiny bit of water into their mouths. Its like a piece of foam on a stick. Thats what I have used for years to clean my mouth. Its called Toothette Oral Care (disposable oral swab). I found the product on Amazon.com. If you order it thru the OCF forum link, then OCF gets a small kickback. Here is the link.

http://www.amazon.com/Toothette-Min...&s=hpc&qid=1279713016&sr=8-4

Thankyou so much for your advise as I am in pain all the time now and am getting a little scared that it will never get better. No one seems to say they have it but got better from it. I will ask for more pain meds to take before I stretch it. Its a scary complication!

I have had a bad time but you have been through hell! Good thoughts to you that you may have a long respite from this nasty disease.
Thanks
Tone