Colin, Thank you for the reply. They want to take about 70% of my tongue. Maybe I'm looking at it wrong but I can't imagine life without it. To probably never be able to eat again. To never be able t go out with friends and have a drink and carry on a conversation that people can understand just seems like a very limited life. The pain from my cancer has made it very difficult to eat and I hardly ever speak because it hurts so much. I can't imagine being this way for years. You have experienced what they want to do to me so you have a better insight than I do. My wife said she is good with my decision wither way. I know the radiation/chemo option doesn't have as much success but I'm seriously looking at it. Any additional things you could tell me would be greatly appreciated. Thanks Again, Marv 

Hi again Colin, Thanks again for the reply. I just thought I would update you on my saga. I spoke to a radiologist today and he was the most helpful person I have spoken to yet by far. I asked him what he would do in my situation since he sees patients who have had surgery and just radiation/chemo all the time. He said that if it were him, he would have the surgery. So, I've decided to go with the surgery with limitations. I'll let them take up to 60% of my tongue and stop. The radiologist said that if they don't get clear margins, he can probably treat it with radiation. The surgeon has agreed. I go in next Thursday for the operation. I'm more afraid than I think I've ever been. Not of dying, but on what I might be like afterwards. I want to thank you again for responding to me.

Hi again Colin, thanks for getting back to me. If you don't mind doing so, can you tell me what are the biggest changes you've noticed to your life since the surgry? What about going out to dinner with friends or family or going out for drinks (you didn't say if you can drink liquids)? Was your speech affected and does it present much problem during the course of a normal day? I know my speech will be affected. I'm haveing about 70% of my tongue removed but it looks like the base will be in tact. I don't know how that compares to what you had done. Also, can you tell me why you didn't regain the ability to eat? If there's anything I can do to minimize the lasting effects I want to do them. Again, thank you. I hope I can have a positive attitude like you do..  .

Hi Marv,

We used to eat out with friends or alone on a regular basis. But we no longer do that.

Having moved to France 15 years ago we have made a new circle of friends, although

many Brits have returned to the UK in the last 2 years. We have friends round for dinner

about once or twice a month and I sit in on the meal. I am quite happy to do this and when

they don't understand me Her indoors translates. Most of our friends make the effort

to listen and try to understand, which I appreciate.

We were in Florida for March with american friends and went out for dinner. This was a

first - it was fine.  The wine waiter had no problem with an order for red wine (20 percent wine

topped up with water).  Trying straight wine is very uncomfortable.  I also have a numb

righthand side to my mouth. (like having been to the dentist) so dab with a tissue to make sure 

I dont dribble when drinking.  I just sit and watch the lions feed.

With not much tongue I cannot manouvre food to my throat and swallow.

You get the occasional annoyance. An aquaintance out here tried  talking to me at a social

event and after a minute threw his  hands in the air and said 'I can't understand a thing yiu say

and walked off. I just thought 'Prat'  and carried on. That is the only time anyone has been other 

than pleasant and helpful.

      You should be offered speech therapy once you are healed and with luck be able to be understood

by your friends .

       Life will be different but still enjoyable.  Try to keep fit once you are fully recoverd. I fast walk,

have a weight machine and exercise bike.

Regards

Colin 

Hi Colin,

Thank you for the reply. You've given me more insight into what life is like after surgery than I've gotten from any of the borads I've been on or from anyone at the hospital were my surgery is scheduled. I can't tell you how much I appreciate it. 

At my request, I get another CT scan in three days to see if the cancer has grown since the last CT scan. That will give the surgen a very good idea of the current size of the tumor. Then, we're going to discuss the plan of action for my surgery which is scheduled for one week from today. If it's grown, I'm going to have him just remove the tumor and get then any remaining cancer with chemo and radiation. If it hasn't grown I'm going to have him take the tumor and get clear margins. A radiologist at another hospital I went to for a second opinion contacted several other hospitals including Johns Hopkins and the Mayo Clinic. They said removal of just the tumor was the second best option available at present. Removal with clear margins is the best option for survival.

If you can think of anything else that I might find useful on my journey that you've already been on, I would appreciate any input.

I can't thank you enough,

Marv

.   

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