CSN Login
Members Online: 12

tongue cancer

frenchyp's picture
frenchyp
Posts: 2
Joined: Feb 2008

Hello,I just went to see a ears,nose, throat last friday, and give me some details of what will happen to me soon, my big big fear, right now it's that surgery, did someone went through it already?

BugHunter's picture
BugHunter
Posts: 152
Joined: Oct 2007

Welcome and sorry you even have to think of being here.
Can you give some more details?
1) Have you been diagnosed already?
2) If so, where and at what stage is tha cancer?
3) What have you and the Doc talked about as far as surgery and other treatments?

BILL

TereB
Posts: 288
Joined: May 2003

There have been several people here with tongue cancer that are doing well. One has not been coming to the boards because he is recovering from another surgery.

Maybe one of them may be able to answer you soon.

I do not have tongue cancer but I am a head and neck cancer survivor. I am sorry I cannot give you useful info right now. Most of the people I know with the same as you, had their surgeries and recovered. Check soccerfreaks webpage here.

Sorry I couldn't help.
All the best

AuntyP's picture
AuntyP
Posts: 8
Joined: Aug 2007

Hi there, i remember how scarey these early days are, i had tongue cancer stage 4 i didnt have surgery just radiation and chemo i have just been given the all clear so amazing things can happen, one thing i will say is try to take each day as it comes thinking too far ahead will drive you batty...you have come to a great place for support wishing you luck with your treatment

jeepie
Posts: 2
Joined: Sep 2007

I had surgery for 3/4 tongue replacement in July, still have peg in and had to have tooth extracted, have what ENT Dr. calls TMJ, but want to go back to dentist and see if it is not something more. Taking codiene for earache is causes. Can sip Coke and liquids, but nothing heavier. Does anyone have any other "food" ideas? At times, it does get a little dreprssing, but take walks, read, play Mah Jongg and try to not complain, my husband has been a "rock" thru the whole long process.

frenchyp's picture
frenchyp
Posts: 2
Joined: Feb 2008

Hi , so sorry for your pain and hope the best to you, right now for me , I just don't know what to decide, the ENT went to do surgery, no chimo or radiation just remove the maximum ,of course she said after pathology test , that may change , i will may have radiation.my Husband and I freack out about that surgery and wonder where to go to have one other opinion, do I need surgery , ???do chimo and radiation cannot KILL IT ???who to make the right decision???? thank you to listen to me. I VERY APPRECIATE ,YOUR MAILS,IT MEAN A LOT TO ME AND ALSO FROM THE OTHER SURVIVORS HERE.

KenC
Posts: 4
Joined: Apr 2004

There are lots of variables, but a recommendation from a comprehensive cancer center is a good idea. That way you get a team of experts working together. Time is of the essence. In my case a program of intense radiation and chemo simultaneously, followed by a minimal surgery to biopsy the area and lymph nodes was successful, after a stage 4 diagnosis of cancer of the base of the tongue, that had spread to the lymph nodes. I am now almost 4 years cancer free. You need a positive attitude and stay strong to stick with the treatment. I have great doctors at the Mt Sinai Comprehensive Cancer Center in Miami Beach. I cannot say enough about them. They saved my life. Best of luck to you.

jkinobay's picture
jkinobay
Posts: 247
Joined: May 2007

As KenC suggests, get to a comprehensive cancer care center, ask for the 2nd opinion from a "TEAM" of specialists in tongue, head and neck cancers. Then, trust them and throw yourself to their mercy. In other words commit 100% to do whatever they say. They have seen your diagnosis probably 100's if not 1000's of times and know the odds, the most effective treatment plan and the latest technology. But, DO IT NOW. Time is of the essence.

In my case I was fortunate enough to be near Tucson, Az. and got referred to Arizona Oncology. They saved my life.

DO IT NOW..............DON"T WAIT!! Hoping the best for you............JK

stevelfun's picture
stevelfun
Posts: 17
Joined: Dec 2007

Hey there,

I had stage IV tongue cancer. In the tongue, base of tongue and into the begining of my throat. Quite large - like 2.5 x 4.5 cm. (BTW - until a sore opened on my tongue - I had no idea it was there)

Surgery - partial glossectomy - they basically removed half my tongue. Used a radial arm 'flap' to repair the place where the cancer was removed.

Partial neck disection and lymph node removal. Cancer in some of the lymph nodes.

Chemo (cisplatin) and radiation (IMRT, mask). Feeding tube during treatments.

I am a bit past a year post treatment. Finished 6/07.

My doctors, nurses, techs all marvel at how 'functional' I am given the degree of the surgery. My one doctor - the surgeon - always smiles at me and I know a large part of that smile is because of how well I am doing with respect to speech, swallowing and general health, activity level, etc.

One of the radiation techs - when I first went to treatments - commented that he 'had no idea the surgery that i had' until he read my file. He was amazed.

There are many things that play into your decision where to get it done. I went to Dana-Farber in Boston (I live in Mass). I have no doubt that they gave me the best possibility for a good outcome. My treatments - well, I did them locally. The radiation was every day for seven weeks - the drive to Boston wasn't very attractive - though I could do it assuming I felt okay. People at the local cancer center - radiation oncologist said that they could do for me what they could in Boston. Chemo - is just IV's they hang - they can do that most anywhere.

Hey, I know it is a scarey thing. One great big unknown. Get good doctors you have confidence in.

Best of luck to you.

chris61071
Posts: 1
Joined: Nov 2007

Dear Steve,
was just reading about your cancer.Sounds alot like my husbands.He had half his tongue removed with a flapper from his arm. part of his lower jaw 10 limph nodes on right side and 8 on the other. that was a year ago on mothers day.He still has a feed tube.They say he will never be able to eat again.And with the surgery he was given 10% chance of making it 5 years.He is also at a stage 4. Did u have a pet scan?They are wanting him to . I was just wondering if it is worth it?They said when it comes back it will probably be in the lungs or liver. Have you heard that?Oh also he only had radiation no chemo. Well thanks for any info. I am sorry u have cancer, but it's nice to know that you are not alone.Are prayers are with u and ur family.

Best of luck

mikeo713
Posts: 1
Joined: Jun 2014

my friend just had 1/2 his tounge and lypmh nodes removed.. Is there any advise on the recovery you can share? How are you doing?

longtermsurvivor's picture
longtermsurvivor
Posts: 1792
Joined: Mar 2010

Welcome to the board.  You will note that all the posts on this thread are from 2007-8. The original poster is no longer in attendence.  Don't be afraid to post a brand new thread to ask questions on this board. YOu will get lots more answers that way.

 

Pat

josie_5
Posts: 6
Joined: Aug 2007

i did 2 months ago. They took 8 cmm out of my tongue. Trying to find something to eat and swallow is most difficult. How did yours turn out? Prayers are with you and for you. Best of luck. Josie

sassyque
Posts: 44
Joined: Jun 2008

I had tongue cancer 5 years ago.Did not have surgery because they would have had to remove my entire tongue and voice box.I opted to just have radiation and chemo and also breachytherapy.It was hell but I'm still here and I wasn't supposed to be.Good luck and God bless you.

jackflash22's picture
jackflash22
Posts: 242
Joined: Aug 2013

I had surgery...neck dissection...for back of tongue cancer. I had part of my tongue removed.....hardly any clear margin. My tongue was repaired from the inside of my cheek. They took the inside of my cheek including blood supply, took it through my tongue attached it and left the other end still attached to my cheek. I had a lot of nodes removed 3 were with cancer. I could speak clearly and move my tongue easily and after a while eat OK. I then had 30 rads over six weeks. After the rads I could only feed through a PEG tube and my esophogus completely blocked. I'm nine months out of rads now and waiting for an endoscopy from stomach upwards to see if it can be unblocked they need an X-ray guided scope. I, ve had two endoscopes already which didn't work. I also had Botox on my bottom lip as my mouth 'dribbled' it has worked really well and looks almost normal the surgeon who did the op did the Botox. I have been tired and no energy and the tests found my thyroid had got damaged from the rads and I'm now on meds which has changed my life I've energy and feel my old self again. I go for long walks, feel happy and look forward to the rest of my life which wouldn't have been long without the surgery and rads. It's tough treatment but over sooner than you think. Not everyone get problems after I was just unlucky with the swallowing blockage but don't dwell on it. I feed through a PEG tube...Ensure 2 cal and it doesn't bother me even when everyone is tucking in to real food, it bothers them but not me. Go ahead with what the specialists recommend maybe a few months will be difficult but you'll get over it. I didn't get pain after the surgery it leaves your nerves numb. After a year my feeling is almost back. During rads keep your neck creamed with E45 and gently massaged. Rad burns can be applied with hydrogel which dries them up. I hope this helps you any problems after the treatment can be treated........this is my experience, not everyone has the same experience.

debbiejeanne's picture
debbiejeanne
Posts: 2401
Joined: Jan 2010

jf, i just had my esophigist stretched again yesterday morning.  i've had this done several times because it always closes back up.  this time the doctor cut the center of the throat to make it open more.  he also removed scar tissue from rads.  i know it open a lot more right now b/c a pill that always took 5 min to go down, went down right away today.  my throat is pretty sore and i haven't really eat anything yet but i'm sure that will be better tomorrow.  at first the doc was going to do a ct to show him where the coratid artery is but then decided it wasn't necessary.  right now, i can see/feel the difference in my throat, i just hope it stays open.  i'm telling you this so you can mention the cutting to your doc to see if that's an option for you.  my doctor used lazer.  it was out patient and took about 45 min. praying for you.

dj

connieprice1's picture
connieprice1
Posts: 299
Joined: Oct 2010

Sorry I didn't check the date!

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network