a month ago i awoke from surgery without a tongue,before sugery i was told that i may lose part of my tongue,which was fine with me.if i had been given a choice i would of preferred to remain intact,(i was functioning fine i could eat,taste talk the only medication i needed was a few codine or oxycontin a day).and go into hospice when necessary,i was stageIV.i still am in shock over what happened.i live alone in the middle of nowhere and can barely function without speaking.a few weeks ago they gave me a plug on the end of my tube so i can utter words,but many are incomprehensible. i can't swallow,i gag when rinsing and have feeding tube since operation 10/18.according to the surgeon the cancer was so large that they took muscle from stomach instead of arm with artery,which i guess would of helped me to swallow.i don't know what else to say, the only relief i get is from pain med.they cut the artery in my shoulder which they said they wouldn't and told me trache would be out in a few days,it's been five weeks now since rad.neck dissection.i can breathe thru my nose.some of the stitches in my lip are still in and have become infected.

Lyle.4

Have you talked to your Dr about speech/swallow therapy? How often do you see your Dr? You have some real issues here that they should be working on for you. You are your own best advocate, stay on top of your Drs. Does anyone like a nurse come visit you?

I know you've been through a lot already, but you need to hang in there and your body will heal in time. My thoughts and prayers are with you tonight.

Hi Lyle,

I remember you from before. You were considering consulting with my ENT I think. Where did you end up being treated? Whereever it is, you need to speech and swallowing therapy and also maybe some connection to social services in your area that can help you considering you are barely able to speak right now. You may need to kick up a little bit of fuss to get those things to happen if you weren't treated at a CCC and are "in the middle of nowhere". I assume you are going back to the doc since the stitches have become infected? Make a fuss then about the other things you need,

I assume they removed your tongue because they thought you had a real chance of surviving the cancer if they did that, and I can imagine the mixed feelings you must have about survival with as many quality of life issues as that creates. But if you can get some speech and swallowing therapy and some support in your life (it wouldn;t hurt to talk to a counselor who has experience counsleing cancer patients dealing with these issues as well), you might wake up one morning and realize life is still sweet.

I don't know how close you are to me, but feel free to send me a private message if you were treated nearby and maybe I can help somehow.

Nelie

thank you for your replies,yes, nelie we have the same doctor he suggested n.y. or buffalo,i have an app't for tuesday and a swallowing test,and i hope he will remove stitches,i've been taking antibiotics.i have a visiting nurse that comes once a week.one thing i have learned the hard way is never go to a teaching hospital,every morning they'd prop me up for the new crop of students to gawk at.i will take your advice,thanks again.

So you were treated at a teaching hospital? I assume then that my ENT didn't do the surgery and you went to Buffalo? Where do you have the appt. Tuesday?

Nelie

(being gawked at during rounds is one of the hazards of being in a good hospital--almost all of which are teaching hospitals--but I can understand how hard that must have been when the surgery was so much more drastic than you expected)

Lyle, Are you having radiation after the surgery?

hi and thanks for your interest,i went to n.y.c. for surgery,i'd be more specific but i don't want to get into trouble.i wish i'd gone to buffalo the doctor there was much more realistic in his assessment.he told me i may be eating thru a tube for as long as six months,the doctor in n.y.,given the same test results said i should be eating in two weeks,so of course i took the easy way out.which turned into the shock of my life.i had previous radiation twice, a total around7500units,so no rad. or chemo was suggested.thank you tim stoj for your prayer.

So do you go back to the place in NYC for follow-up or is the follow-up local? It sounds like you have really been fighting quite the battle with this disease. I will keep you in my thoughts. Keep fighting the good fight!

Nelie

Lyle, I too am praying for you. oh my I wish I lived closer to you so I could help. Carol

Lyle,

You are more than welcome. Is this your 3rd go round with this monster? I ask because you say you had rad twice before.

Keep fighting and I'll keep praying for you.

hello again,thank you for your thoughts and prayers,they must be working,i'm feeling better.i was first dignosed scc rt.tonsil and lymph node stage3 2/04.for the last five years of his life i was caregiver to my father, an m.d. with parkinsons,he passed1/06.originally i would of had surgery,my father didn't want me to,and i couldn't find anyone to take care of him.looking back it doesn't make much sense.i started rad.3/04 but i had side effects.i asked the doctor if he could treat just the cancer,and spare my healthy tissue.he never told me what i asked for is called stereotactic rad.ironically his hospital offered it the next year.i've also found out that your first shot with radiation is your only chance of eliminating the cancer.i stopped after two weeks,a second round of rad.10/04 did little to reduce it,i finally had stereotactic rad.9/05 but too late.i had been scheduled for a follow-up in n.y.c. but asked if my referring doctor in ithaca could take over,i am to have my second visit on tuesday and a swallowing test and i will drive myself.i have mixed feelings about returning to new york,they have a factory atmosphere that i wish i'd never seen.i'm sorry if i'm slow to respond i've been sleeping alot lately.thank you nelie,tim and carol for your kindness.lyle

Hang in ther partner. And like I said keep fighting.

Lyle, Since you can't have radiation, is there no chemo they can give you to help prevent a recurrence at this point? If it were me, I would want to do everything I could to try to make sure the surgery was worth it and the cancer was gone, almost more so *because* it was such drastic surgery.

Anyway, good luck with the visit Tuesday. I hope you'll get your stitches out and that will make you feel better.

I don't know where "in the middle of nowhere" you live or how close it is to here but please send me a private message if there's anything you need I might be able to help with.

Nelie

Lyle,

Your case sounds a lot like mine. I had recurring cancer that grew aggressively to where most of my tongue was removed in Feb 04. I was on a feeding tube and trach. The trach fell out on its own after 6 weeks. Still have the feeding tube but I admit I have not been as aggressive as I should be about taking more food orally.
This maybe due to fact ENT would not clear me for therapy until Nov. 04. I had 36 rad treatments in spring 04 and about a month after that I got a severe cellulitis infection where the neck dissections were done. They had to drain the area (loads of fun!) and put inin the hospital for 2 days with strong antibiotics.
I had a year of therapy and the first one had me use a syringe to "shoot" liqiuid to the back of my mouth. I am still using this method to keep my swallowing functions intact. My taste sensation is pretty good now. The only thing is that neither speech therapist had had much experience with oral cancer patients. If possible, try to locate a therapisy with experience in treating oral cancer patients, especially those who have had glossectomies.
I saw a maxillofacial prosthodontist about a year ago who fit me with a palatal drop mouth prostheses. My family tells me it helps marginally with my poor speech but it is not fun to wear so I don't use it much.
As far as getting the PEG tube out, I have read here about some people who have had tongue removal that had it out in 6-8 months. Guess they were more aggressive than me.
My neck is still stiff especially later in the day. I take a little Roxicet at bedtime and also restoril that really helps with sleep.
It is rough dealing with loss of tongue and you have my sincerest wishes for recovery. I try to be as positive as I can getting other interests and exercising.
Just as an afterthought, I read about a guy in Vienna, Ausria who had a successful tongue transplant in July 2003. Funny thing is I haven't read anymore about it in medical jourenals since then and don't know if he made it OK. Maybe doctors and insurance companies here don't want to advertise it because it is probably VERY expensive.
Well, that'sa a lot but feel free to contact me if you have any other questions.

Jim Haucke
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SCC Rt lateral tongue Dx 9/03, Surg 11/03 (T2/N0M0);recur SCC BOT and anterior tongue Dx 1/04; surg 2/04 (T4/N0M0) subtotal glossectomy, forearm free flap, floor of mouth reconstruction,pharyngoplasty;trach until 3/04;PEG still have; 36 rad (3/04-5/04)therapy 12/04-12/05; 2 esophagus endoscopies

jim,thank you very much for writing.it's nice to hear from someone who has a similar situation.i had a swallowing test last week,everything goes right into lungs,now they're saying 6-9months,w/swallowing therapy before i may be able to swallow,and maybe more surgery.i'm thinking i might be better off moving to where i was treated.right now i'm about 3&1/2hours away and am seeing the doctor who referred my surgeon.i guess what they saved of your tongue is giving you taste,they put a plug in my trache and i can talk barely well enough depending on how much phlegm there is,i don't expect to taste unless thru smell,if that's possible.i've had the trache about six weeks,did you have any problems with coughing up phlegm or clearing throat after trache fell out?i can't believe it took six weeks for someone to give me a brush to clean the roof and back of my mouth.i brush every day but had scars and mucous that built up.now i'm pretty clean,but can't imagine what my breath smells like.i take roxicet at night also,it helps alot.and i try to get out,it seems to help,which is one of the reasons i'd like to move.i'm in the middle of farm country and there's no place to walk without driving.the palatal drop mouth prothesis sounds interesting,my speech is good somedays but not others.did you ever have a plug in your trache?i was hoping to hear from someone who had gone thru this.thank you so much for the opportunity to ask.and i wish you the best possible outcome.lyle