Hi again Laureanne,
Even though our operations were much the same I am surprised that you were only in hospital for around 8 days. I was 1 week in Intensive Care and 1 week on the ward and slowly lost all my tubes before I went home.
I only had the Nasal tube (NG) for feeding and that was removed around day 10.
You have been through major surgery and it will take time to heal. I was also a little frustrated when no one would give me a timeline for when the different parts would come good.
I have been on this forum for some time and again and again you will see the advise that everyone is different�it is true!
Did they not tell you at the hospital when the trach and peg would be removed? Are you getting any home help?
Patience was never my greatest virtue but you will need a lot over the next weeks. Try to rest and relax as this also helps with the healing process.
Gabriele

You didn't say when you had your operation - The Dr. told me upfront that I would be in the hospital 7 - 10 days 2 being in intensive care - Then the rest was critical care for rest. I had the NG tube removed the day before going home - when they replaced it with a Peg tube. Peg will remain till I can eat - I still have not had any liquids or solids! - My speach therapist says she is afraid to try food until swelling goes down - My tongue is still so large and I have trouble getting the liquids to the back of my throat and takes time to swallow it. She wants me to have a Barium swallow test first. I go back to Boston tomorrow - not sure how long they will leave the trach in for! - I am wondering if I will be able to swallow liquids and eat food again ...Will I be able to taste or enjoy food again? -- Want to know how others made out with the free flap surgery - I had a large part in the middle of my tongue removed -- some only have one side of the tongue!!

Hello Laureanne,
Hope your appointment went well today.

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

If you had surgical margins that still had dysplastic cels in them ( cells that are not malignant but halfway to converting to it) you are a candidate to have radiation to ensure this is completely cleaned up. Taking more tissue surgically will create quality of life issues for you and since it is dysplasia, and not more cancer, radiation is the standard of care.

I'm going to let the others here that have had the flap done answer that part of your question with their direct experiences. I'm from the school of radiation and surgery, no free flap procedure, but did have a PEG for more than a year, if you are having problems with that.

My husband Johnny was diagnosed stage 4 squamous cell carcinoma base of the tongue. He had a 9 hour surgery they removed 1/3 of the base of his tongue, 18 nodes 3 were positive. Following surgery he had 30 radiation treatments as well as Erbitux. On 8/23/10 he underwent 18.5 hour surgery to remove the tumor, nodes(0 pos.) and Epiglottis/Tongue reconstruction with free radial forearm flap on 8/23/10. The surgeon sent 18 frozen sections to the pathologist during the surgery. The day before he was sent home we were told the pathologist made an error and one of the margins from the back of his mouth had microscopic cancer cells.How could this happen? Has this happened to anyone else? We see the chemo doc on 9/27/10. What type of chemo will they use? When he is healed another surgery

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

Laureanne, if you start a new post then it will get the attention it deserves. This type of question would be best put in the After Treatment catagory. Im sorry but I have had OC 3 times but not on the tongue so I cant give you advice. Im sure someone who has gone thru a partial glossectomy will be able to help you.



Johnnyswife, when starting out, please read the very first catagory titled "New Posters Read this first". It will help you navagate OCF. Please begin a new post so that your topic gets the proper attention and we can welcome you properly.

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.

Laureanne is now posting on After Treatment Issues.
Good tip Christine.