Member

Registered: 09/14/10
Posts: 7
Loc: Massachusetts I am a 53 year old female who went to dr.s for over a year complaining of tongue pain...all (6) physicians I went to said it was Lichen Plantis and gave me creams ...Then when I couldn't swallow I went to ENT and they said I have a tumor on my tongue - It was tough to decide what treatment to persue, but I went with surgery as they say it was the better option as the cancer I have does not always do well with radiation. I had the surgery on September 3 ...Wonder if I made the right decision ...I had to have a "free flap" surgery where part of my forearm was put in to cover loss of tongue - I am now home ...with a trach, suction machine and feeding from Peg tube. I really want to hear from someone with their experience ...How they made out ...Will I ever speak ok, eat ...etc
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Laureanne, thanks for reposting this in the after treatment section. Now, Im sure someone who has similiar experiences whill be able to help you. Wishing you all the best with your recovery.

Member

Registered: 09/14/10
Posts: 9
Loc: Massachusetts My free flap is the whole top of my tongue - Had the surgery September 3 - Home on the 11th --came home with a trach, suction machine, peg tube in stomach, peg tube feeder, nebulizer ---
Tongue is still very swelled - feels so foriegn - Speach person brought cold lemon swabs ....I could not feel or taste anything on the top of my tongue ....some to the sides ....
Has anyone who had this surgery ...Do you get anything back?
Also want to wait for a bareum swallow before letting me try food - I can't get liquids over the big tongue, when I curl it a little I can get it back to swallow. Others with experience ---will I ever be able to eat liquids/solids ....how long did it take you? How long before you had trach & Peg tube removed......How long before the forearm heals and looks like skin and not raw meat? Really would love to hear from you
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53 Year Old Female Non Smoker - Non Drinker
Stage 2 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG

Member

Registered: 09/14/10
Posts: 10
Loc: Massachusetts I have just returned from Tufts where I had my surgery. My first check-up and got my Path report. Not so good news - first they were almost certain that I had varucous carcenoma - but path report was that it was squamous cell carcinoma ..they took 14 lymph nodes - all were clear! - They took a large part of my tongue ...But the margins were all diagnoised as dysplasia..Not sure what that really means, but they are looking into whether I need to do radiation or just watch me/ Does this means it could turn into cancer? Is my likelyhood that I may have a return? The free flap looks good and they took out some stitches, tongue moves a little better. I was started on some liquid but I cannot really feel it or taste it well. Does anyone know if I will get any feeling in the flap ...I have a few taste buds but taste very little...will that get better. Doctors are not answering my questions - Will I ever enjoy food ever again? Can someone who had a large part of tongue replaced with free-flap tell me? Ohh and the trach was removed Yea! -- Still have peg in stomach!! HELP


Edited by Laureanne (09/22/10 10:21 AM)
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53 Year Old Female Non Smoker - Non Drinker
Stage 2 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG

I have started drinking liquids and am doing ok ...but it takes effort to get it back to my throat - over my tongue. I can taste a little on the sides of my tongue and to the back of my throat. It is faint in taste - No one is answering my question about ---Did someone out there have 3/4 or more of tongue replaced with a free flap and if they ever had feeling in their tongue or were they able to taste much ...how was the swallowing of foods etc after a while? Can you tell me what to expect.Everyone seems to avoid this question .....Help
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53 Year Old Female Non Smoker - Non Drinker
Stage 2 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG

Laureanne,
I am sorry that I can not be of much help. Even though we had much the same diagnosis and similar operation mine was a lot easier than yours. Firstly I only lost one side of my tongue. I was told 1/3 but it looks less to me! I did have 4 teeth removed so they could anchor the flap to my gum. After the 2 weeks in hospital I was without any tubes and could begin with the healing. Eating was a problem for quite a while and at the start even scrambled egg was too course so I had to blend everything. With each passing week I could introduce a little more bulk to my food and after a year could eat mostly anything even though I was a little slow. My sense of taste also came back very quickly. I am sorry that I can not be of more help and even reading my easier time with it all might only distress you more? I felt you needed a reply and maybe someone else closer to your situation who is active on the forum at the moment will jump in. I will still look out for your post's and answer where I can.
Not sure how it happened but do you know you now have 2 signatures.
Hoping you improve with each passing day.
Gabriele

Hi. My sister had 3/4 of her tongue replaced with a free flap. It took her awhile but she was eating regular food( little peices) and talking really well about 2 months post op. She was also able to taste. She did say her flap didn't feel like her real tongue though but u do get use to it. Everyones recovery is different though. Hope this helps.

It's early days yet. I had something similar and it was about three weeks before I was allowed home from hospital. Improvement was rapid after that. It takes quite a long time for the swelling to go down - months probably. But it does get better!!! When your tongue goes down, speech and swallowing will be a different story altogether:)
I can feel my native tongue but the flap (half my oral tongue) is numb. My taste is not affected and I've put on lots of weight. Initially I had trouble swallowing anything which was not liquid but after a few months I could eat meat with gravy. At first the last mouthful had to be pushed down but now - after a year, I'm mostly fine,
I had lichen planus too. Went to many doctors and specialists over about 6 years before someone decided to biopsy it. I also have the dysplasia but my surgeon is not too worried about it.
I know what you are going through and wish you all the very best. Let us know how you progress.

Susan:
Does your sister have e-mail? I would love to have someone who has gone thru this to bounce things off of. How is your sister doing now and how long ago did she have it and where?

Also wanted to answer your question about wrist wound. It takes ages to fade but eventually it does. I'm nearly a year out and it's still an interesting scar but it's improving slowly I think and it doesn't worry me at all. I wear a thick watch band when I go out. I'm considerably older than you so your wrist might return to near normal more effectively than mine:)