Hi badgolfer, I had the same diagnosis 11 years ago. the options were a six an half hour op or go home with a supply of morphine. He said I would not be able to talk or eat. I can't eat and my speech leaves a lot to be desired, but I still manage golf, angling and driving my sports car. Life is good and I have enjoyed every minute and hope enjoy a few more years. I am 82 and in not bad shape. I cannot understand when you may have no choice. Colin

Hi Marv I have been reading your posts and thought I would just add a few lines about my own experiene and surgery. I had a very hard white lump being a tumour in my tongue on the right hand side,which was growing quite rapidly. The MRI did not show any cancer in my lymph nodes but my surgeon was quite adamant that I really needed to have a right side neck dissection because the tumour was just over the 9mm margin for lymph node involvement. I agreed to this and glad I did because when they removed 72 nods from my neck, sure enough 7 of them had cancer cells( contained) so three weeks after this second lot of surgery I had 35 fractions of radiotherapy and chemo to clear any traces left behind. Since then, touch wood I’ve been fine and now in my 5th year. I am lucky in as much as I can talk really well as I have a full half of my tounge, I just lisp a bit now. I can’t eat dry foods, spices or chocolate etc but that’s ok I just have a nice cup of coffee and dunk the biscuit!

I won’t tell you it’s ok because the experience is crap but you will just get on with it and the days will eventually get better and you will adjust to your own circumstances quite quickly. I wish you all the luck in the world and hope everything goes as well as it possibly can. Kind and best wishes Carol

Hi Carol, Thank you for sharing your experience. I'm sorry you had to go through it but glad that you're doing well. My biggest immediate fear is that I won't be understood by most people and that I won't have the ability to eat. My biggest long term fear is recurrence. My oncologist said the chances of it are 50% with stage 4 and that most recurrences happen withing two years of surgery. He did say that the chances go way down if you make it to 5 years so congratulations on that milestone. 

I will say that this disease has given me a much greater appreciation for life. I've also been amazed at how caring so many people are, even strangers. Hopefully, sometime in the not too distant future, I'll be posting on here and reassuring others instead of looking for reassurance. Time will tell. Again, thank you for sharing.  Marv

Hi marv,

A few thoughts about the op.

I  remember waking up with a lot of bruising to my left forearm and shoulder. They had 

obviuosly strapped them down. I was told they called me the warrior, I stuggled a lot.

You will have a lot of mucus in your throat which you need to cough up. The first night

I heard this growling noise from a room along the corridor. The next night it was me.

I never suffered pain at any time.

they kept me ln an almost sitting up position - after a day or two I was getting a numb bum.

If you can get a ring cushion its a good idea.

If you have to have a peg fitted and it is the small button Getting it replaced is a pain.

I still have it. For the first 18 months I had to go to hospital to change it. The nurses waited

for a doctor each time.   I have done it myself for the last 9 or so years. I can advise

on the technique. I find they last for 5 or 6 months and then the small bladder which retains

them becomes porous and leaks.

      I know you must be apprehensive but it should not be too bad an ordeal.

Expect to be pretty weak for a few months but that will pass.

   I wish you well.

Colin    

Colin,

Thanks again for the helpful information. I'll get a ring cushion before I go in for surgery two days from now. As for a peg tube, my doctor said they don't do them. They put it through the nose. I might get one when I go for radiation if I still can't swallow. Radiation treatment is at a different hospital and they do use peg tubes. Hearing from you has made this easier to accept. Even though I have a  a very supportive wife, familly and friends, none of them have been through it. Hearing from someone who has really helps.

Marv

anyone have any news on Marv's progress? Colin

Hi Marv

Thinking about you and hope your surgery went ok? Would love to hear from you when you can.

Regards

Carol 

Hi. Well, I had the surgery on May 17th. I had about 60% of my tongue removed, which was less than they thought would be. I had a flap made from the skin on my left forearm. I was in ICU for three days then transfered to an extended care facility where I still am until go home in four days. So far, the biggest setback is a damaged vocal cord, I can pronounce words fairly well but can only talk in a whisper and I run out of breath after about one or two words. I an still have a trach tube. They won't take it out unt could have I have swallow studies done. Turns out that your vocal cords help determine where things go when you swallow, They said that taking out the trach could cause aspiration. There are things that can be done to improve it but they want to wait on even temporary repairs for at least two months to see if it corrects itself. Has anyone else had this problem?

Thanks for the support. It made a big difference in helping me make my decision.

Hi Marv,

   Pleased that you are post op and only lost 60% - the same as me.

The Prof. that was my surgeon wanted to put a PEG i n after about 6 days - but his team got me

a reprieve for another 3 days. I found the trachea tube  annoying and in the night it would come out about 5 or 6 inches. I just pushed it back in.

  I preferred the PEG which is just as well as I still have it. Do you have problems saying words beginning with G?   Did they remove your soft pallet?  (the back of the roof of your mouth just above the tongue)

Was the flap added to your tongue. I know some people had reconstruction with their Ops.and all seem to be OK.

  I had very little mobility with my tongue after the Op. but has slowly improved over the years, I hope yours will be OK.

.

Really good to hear from you.

Regards

Colin

Hi Colin,

Fortunately, my soft pallet was ok. My flap was added to my tongue. They gave me exercises and I'm getting better at moving it around.  I can kinda stick it out now and I can move it from side to side and up and down. They said it would improve as the left side built up strength to move the right side. I don't have trouble with my K's but I tend to slur my S's. All things considered, I'm very happy with the way I pronunce words. People hearing me for the first time can usually under me even thouhg it's almost a wisper. 

Now, if I can get my one vocal cord moving, my speech would be about 80% to 85% as good as it was. I can only say a word or two before I have to catch my breath because the one cord doesn't move.

I do still have radiation coming up and realize that could cause further damage. As for eating, I'll be evaluated for that in the next two weeks. A lot depends on the vocal cord.

I was lucky enough to get one of the best surgeons around and to have a wife who's been right there every step of the way. I told her that I owe her for all that she's doing. She said my honey do list is growing by the day.

This certainly isn't something that has a quick fix and has no gurantees along the way no matter how well you think things are going. I hope things continue to improve for you.

Thank You,

Marv

Hi Colin,

Just wanted to update you on what's happening. I still haven't got my voice back yet. They're going to wait until after radiation to do the temporary fix if it hasn't corrected itself by then. And, I'm finding that my ability to eat isn't improving. I can still only eat very soft foods. My tongue just doesn't have enough mobility to move things around well. Also, My swallow is no where near as strong as before the surgery. I have to wash even very soft food down with water after a few bites. Eating is no longer a pleasurable experience. It's now a chore. 

As time goes on I'm finding that there are more adjustments to make than I thought  there would be but, I do have more ability than they predicted I would have. I'm trying to be more positive but find that there are times when I have a hard time doing that. Especially with radiation coming up. A lot of people on the boards say radiation did more damage than the surgery and that some of it is permanent.  It sounds like you have learned to adapt very well. You must be someone with a positive attitude about life. If you have any suggestions for preventative mesures to minimize the side effects of  radiation, I would appreciate hearing about them. 

I hope things continue to go well for you.

Marv

Hi Colin,

Just wanted to update you on what's happening. I still haven't got my voice back yet. They're going to wait until after radiation to do the temporary fix if it hasn't corrected itself by then. And, I'm finding that my ability to eat isn't improving. I can still only eat very soft foods. My tongue just doesn't have enough mobility to move things around well. Also, My swallow is no where near as strong as before the surgery. I have to wash even very soft food down with water after a few bites. Eating is no longer a pleasurable experience. It's now a chore. 

As time goes on I'm finding that there are more adjustments to make than I thought  there would be but, I do have more ability than they predicted I would have. I'm trying to be more positive but find that there are times when I have a hard time doing that. Especially with radiation coming up. A lot of people on the boards say radiation did more damage than the surgery and that some of it is permanent.  It sounds like you have learned to adapt very well. You must be someone with a positive attitude about life. If you have any suggestions for preventative mesures to minimize the side effects of  radiation, I would appreciate hearing about them. 

I hope things continue to go well for you.

Marv