since my brother was diognosed with cancer ive been on this site reading till half way through the night. It upsets me and fills me with worry but i need to no what to expect. My brother doesnt no yet what treatment he is having. I noticed every one talks about a peg even if they havnt had surgery. Is a peg fitted automatcly asuming you cant eat
Ellen

Hi Ellen

We've all been where you are right now, whether as a patient or as a carer, and your brother is very lucky to have such a concerned sister.

Unfortunately, no bookstore I've visited has any copies of either Tongue Cancer For Dummies, or So You Have Tongue Cancer--Now What? (believe me, I've looked). While I was waiting for my diagnosis and news about my eventual treatment, my sister did some research--most of it was worst case scenarios, concentrating on all of the complications, mortality rates and such. That only made her more scared for me. I understand that you want to help, and that "forewarned is forearmed", but it might be better all around if you wait until you find out what kind of treatment is planned so you can narrow your search.

I used a nasogastric tube instead of a peg. They do the same job, but I think that the only advantage of the NG is the docs don't have to make an incision for it--they just thread it into your nose, down your throat and into your stomach (don't that just sound like a world of fun?). Someone with peg knowledge should be able to answer your questions better than I have.

I'm hoping for the best for your brother and you.

Julia

In the UK its not standard practice to fit a tube unless they know beforehand that your surgery or treatment are going to make it impossible to eat.Rob was never offered one and then had to be rushed into hospital at day 14 of his radiotherapy with dehydration and malnutrition to have a PEG fitted.It was easily done and we wished it had been in place before treatment started because he wouldn't have got in that state.There are some very brave souls who have managed without but it is not easy.The advantage of a peg really is that it is hidden from view so doesn't draw attention ,its a minor procedure done under sedation and there are not usually any complications although some people have had issues with pain and infection.
Discuss this with your oncologist and see a dietician they will give you all the information you need.

love liz

you hit the nail on the head there julia but i wasnt looking as far as death.
he had been diognosed as base of tongue cancer 2 weeks ago so thats why ive been on this site.on friday we spoke to the specialist expecting him to tell uss what treatment he was going to have. I was expecting the worst but it was worse than that. he has to have a total laryngectomy and total pharyngectomy reconstruction using a bowel graft.
we are expecting this to happen in aproximately 2 weeks. He is a salesman so thats his job gone at 50 yet another blow. the stoma he has fitted will that be classed as a disability?
he will be able to eat once he has healed up but only a soft diet but he won,t be able to talk. Any advise im all ears!
Ellen

HI Ellen
Jennifer here,sorry to hear your news. Frank too was told he would never talk, eat or drink again after his op, less than 2 months later he is talking again (even though he has NO tongue) eating very little but I have every faith that will return in time too after his RT hopefully. We try not to think that far ahead, we bought blackboard and chalk and whiteboard and markers for after his op as writing gets really bad for some reason (be prepard for that too) Iknow its a different op but just wanted to let you know we too were at the same stage you are now and things have worked out different than we were told it would. Its no walk in the park but can get through it.
Thinking of you both xx

Speaking with no tongue is a very different thing from speaking with no larynx i am afraid .The larynx is the "Voice Box" and sounds are produced by air vibrating the vocal chords .No voice box means no sounds.This type of surgery also requires a tracheotomy which will very likely be permanent.What will happen after surgery is that he will have to be taught how to speak again and this will involve the air swallowing method of speech which involves swallowing,closing the tracheotomy hole and then expelling the air while forming the words.There is also a device which can be fitted to produce a mechanical sound if he is is able to have it.I would log into the larygenctomy forum further down the page at the beginning of the forum ,and read some of the topics there.We have an old timer on the forum (Alan aka dancing with roses)and he has perfected this type of speech and i have spoken to him on the telelphone.His voice is a little gravelly,but i could converse with him ok once my ear got atuned to his speech,and he holds down a very responsible job in an office dealing with contracts in the oil industry,so i wouldn't give up all hope of his job just yet.

This is indeed big surgery but once again many people have had it and adjust well,so dont despair.

liz