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

my mother had lichen planus that also developed into cancer.
in her first surgery they removed a part of her tongue as well as lymph nodes - she was able to talk again but never regained her normal voice. she also had a trach and suciton machine. the suction machine we only had to use for a couple of weeks after surgery. i think the trach stayed in for at least 3 or 4 months. i wouldnt rush to take that out - in case something happens and you have to go back to the hospital, its good to have that in (not to scare you, just being honest)

Hi and welcome to OCF.
I am glad you found us as this is the best place to get answers to your questions. If you look at my signature (when you feel like it add one of your own) you will see mine was also diagnosed as Verrucous Carcinoma. I had the same surgery as you and it took a few months but both your ability to eat and speak will get better with time. I had one surgeon tell me this kind of cancer is "low grade" which annoyed me no end but I have read here some time ago that this is in fact true. Mine was floor of the mouth and adjacent to tongue and I believe I lost about 1/3 of my tongue but it looks like less to me.
The 3rd of September was not too long ago and you need to give yourself time to heal. I presume you also had a large patch of skin taken from you thight to cover the area taken from your forearm. There are many of us here that have had the same treatment as you. It will take a little time and maybe some speech therapy but you will get there. More important is that you are and stay cancer free!
I will put you in my watched user list so I know when you post again and try to answer any questions you may have.
I actually have a question for you and that is were you told why you had the Peg tube. I had the NG tube while in hospital but it was removed at around day 8 and I could then sip liquids and have food that was really mushy.
By the way I was a couple of years older when I had my surgery.
Love
Gabriele

Thank you so much for answering so fast - Ineed a sounding board or someone who has gone thru tis!! -- When I left the hospital I still have a trach because of immedint swelling. I have a apt with the surgeon Tues the 21st. Also they did a swallow test before I left and could not swallow. My tongue was taken from my forearm, it is still so large in my mouth and I can swallow some spit and even a little sip of water but with difficulty. So it is to keep my nutrition up. I can't wait o be able to at least swallow -- they want me to have a swallow test before the attempt! -- Did you have a free flap? - How long before eating? - I still talk thru trach but I can talk some but with swelled tongue it is hard. I wonder if I will be more legible in my speaxch and when - I am not rushing, just want to see into my future?

Welcome to OCF. You have come to the right place. Do not try to rush in the healing area. It may take some time and it may take longer than you want, but you will get there. Come here anytime for support and to vent. This is my home away from home.

How do I put my surgery etc info on the bottom of my messages?

Laureanne,

Go to the top of the page...."MY Stuff"..."Profile"...bottom of that page is a box that says "Signature". You can enter all your information.

Wishing you a speedy recovery from this surgery.

Deb

Laureanne,
Click on the My stuff tab, go to Profile and scroll down to signature at the bottom. Add your information here and it will come up every time you post. Have a look at the ones above as examples.
With a signature it gives us all a better idea how to respond.

Welcome to OCF Laureanne. I did have a trach for about 2 months but it was due to a different oral cancer surgery. You will get lots of help from people who have undergone a similar procedure. Everyone is different and reacts a little bit different. Hope you begin to feel better soon.

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

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.

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 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.

Hi Laureanne, I am hoping you are feeling a bit better now that it is nearing the end of the first week of November. I have not had what you had so I can't offer answers for your situation exactly but there are people here who probably can. I was reading your posts tonight and just wanted to come in and be a bit of a cheerleader for you! This is a tough time for you I know and everything is so very new. If I were you I would be asking all the same questions. How are you sleeping? I found sleeping after my surgery awkward and it took time to actually feel rested. I hope you are having some luck with rest.

Laureanne I hope you are doing better and I look forward to seeing you post again!

Meggie