hi my name is Donna i had the operation for mouth cancer in Oct 2013 and would like to know if you have any tips about eating i still cant eat and still being fed by a rigg 

Sorry, I don't have anything for you.  Because I was stage 4 it was inoperable.  I guess they could have removed my tongue but then my quality of life would have been hell.

hi kijar, please reply my last questions if possible, im still having the symptoms you had which is strange taste and my mouth feels so weird, but the ent surgeon had done endoscope through my mouth nose and ear all the way down to my voice box they didnt find anything suspicious, where your tumor was found? i need somebdy's advice please , should i get mri or ct scan done to make sure nothing is wrong with me ? i would appreciate for any advice thanksss

January 2008 - Another MRI of my head and neck this time.  They found something but don't know what it is.  ( which part of your tongue they found smething abnormal? could you see it on the mirror?

February 2008 - Biopsy confirmed the worst.  Cancer of the tongue.  Stage 3.

Feb 08 - saw a cancer surgeon - he said it was inoperable (too large)

Hi, Jose

I can see you are really worried about your symptoms, which seem to be a very dry mouth and strange taste. I'm no expert, but dry mouth suggests a salivary gland problem (not tongue cancer, particularly).

You say you are "in Indo", I don't know where you mean, exactly, but I will assume that you could ask a doctor for an MRI or CT scan of head, to see if you have any unusual structures that are not visible to the naked eye?

But, you may well be getting over-anxious about something which will turn out NOT to be a malignancy. My best advice would be to try to get it investigated, if you're still having symptoms; butm at the same time, try not to worry until you know you have something to worry about.

I hope this is helpful

Best regards

Bron

(head and neck cancer treated 2009, only symptom - painless lump in neck)

hi bron, thank you very much for the information, ive seen atleast 6 or 7 doctors, none of them recomended for mri or ct scan, i asked them for  those tests of my own will. but problem is there are many options of head and neck mri tests, such as mri mouth, mri nasopharynx, mri salivary gland, mri larynx and many more, the quality of medical system and hospitals here are really bad to be honest, im from indonesia. even a ent doctor and oral doctor have no ide which test i should have that covers whole throat and mouth area, i just need to put my mind at rest.its been more than 1 month i have this symptoms. but i read american cancer website, it says imaging test like MRI, CT scan and Xray does not use to diagnose oral cancer. http://www.cancer.org/cancer/oralcavityandoropharyngealcancer/detailedguide/oral-cavity-and-oropharyngeal-cancer-diagnosis

you think an endoscope through ear nose and throat all the way down to voice box  from ENT doctor and few screening all over my mouth from few dentist and oral doctor should be all i could do to find out whats going on with my tongue and mouth?

thanks again for the information

Hi Jose

Sorry about your health concerns.

I am sending you a link to our patient information on tongue cancer.

I hope it's helpful to you.

Best wishes

Jane

The Dr should order a MRI of the head and neck to see if there is a mass that needs to be addressed.  I didn't have a dry mouth until they started treatment.

Thanks for sharing this. 8 weeks ago I completed six weeks of radiotherapy and chemotherapy for tongue cancer. I'm slowly recovering and waiting for my next MRI scan. I'm confident it will be clear. It's good to hear success stories. There don't appear to be many of us out there who have suffered this type of cancer. You have done well and I hope I do as well as you.

Nicola

JANE thanks for the information, ive read it, none of the symptoms match mine, only KIJAR's symptoms match mine, thats why i asked KIJAR where about in his tongue the tumor was, but havent got answered yet from KIJAR.

Hi Jose,

I had tongue cancer in 2007 .

I had pain in my tongue, teeth and ears. I was sent to 2 dentists who said no problem(one said probably a secondary infection from a tooth).

On holiday in the US I went to another dentist who took a biopsy from my tongue which was slightly swollen and had a little white patch.

This came back clear. On return home (France)  I had a scan and another biopsy. This was positive and I was told I had six months.

An operation (6 to 7 hours) plus chemo and radiation therapy would give me a fifty percent chance of another 5 years.

The tumour was fairly large and went from near the back of my tongue down towards the root.

So I think you need a scan. If it shows anything then you will have a biopsy and know for sure.

If there is no problem that will be great!

If it is positive then you have to be ready for 3 or 4 months of unpleasantness.  But treatment and recovery rates are good these days.

I cannot eat or drink and my speech is very poor.  None the less, I enjoy life to the full and still play golf, fish and enjoy my sports car.

I am 77 yers old.and am not expecting to fall off the perch anytime soon.

Good luck

Colin

Hi Nicola, good to hear that your potentially out the other side of your treatment and doing well, I'm just starting a similar journey to you, I was diagnosed with Oropharyngeal cancer 11 days ago, the main tumour is sited at the lower section of my tongue and I have several affected lymph nodes in my neck, I had biopsies taken from the main tumour a week ago and I am due to see my Oncologist next Tuesday to be told staging, treatment plan, type of HPV??. I believe my treatment is going to be six - eight weeks of chemoradiation, any advice you think might be useful would be greatly appreciated.

Regards

Craig

Hi Nicola, good to hear that your potentially out the other side of your treatment and doing well, I'm just starting a similar journey to you, I was diagnosed with Oropharyngeal cancer 11 days ago, the main tumour is sited at the lower section of my tongue and I have several affected lymph nodes in my neck, I had biopsies taken from the main tumour a week ago and I am due to see my Oncologist next Tuesday to be told staging, treatment plan, type of HPV??. I believe my treatment is going to be six - eight weeks of chemoradiation, any advice you think might be useful would be greatly appreciated.

Regards

Craig

Hi Craig,

I hope they have found your cancer early enough for an operation to be unnecessary.

I had  a long op.  The radio and chemo therapy were no problem.

They made a plasic lattice mask of my face. To bolt my head to the bench. Quite comfortable

and no problem. The shot lasted about 30 to 40 seconds. You feel nothing. You may possibly

get a slight sunburn effect for which they give you creme.

I had chemo on Fridays which luckily had no adverse effects. Some people feel nauseous and they give you  medcine for this if it happens..

I had 32 days of radio therapy. On the last 10 days I had 2 sessions.

All in all it was no big deal. That will be 10 years ago in May.

I wish you well. Let us know how you get on.

Regards

Colin

Hi Colin,

Thanks very much for sharing your wisdom. I am writing on behalf of my husband who has just been diagnosed with a T4 SCC tumour on the left side of his tongue. He's going in to have an operation to remove it and I think a fairly sizable amount of his tongue- over half I think. They will also be removing his lymph nodes and he'll be having a course of radiotherapy afterwards. Obviously we are both a bit scared -not only of the cancer but also of the aftermath- how his speech, eating, taste will be affected. I am wondering what I can do to help- what can I bring to the hospital after the operation? What can I expect when he comes out of the operation? Have you had any problems with speech and if so, did speech therapy help? How long did it take for things to get 'back to normal' (if it ever does?)

I'm feeling a bit helpless at the moment and want to try and do the best for him. SOrry if this is intrusive- feel free to not answer all of it :) 

Hi my husband was diagnosed with tongue cancer 24th of May 2016 the worst time of my life when it should have been the best as he had just retired early at 58 and our first grandchild was due any day, she actually went in to labor the day after the diagnosis, he has had half his tongue removed and rebuilt from arm also had neck dissection, he came out of 12 hour op very well was able to talk a bit but was on a feed, only did one day on HDU, had feed in through nose for about a week or so then he went on clear soup, came home after 2 weeks, next hospital appointment they told us he would need chemo and radiotherapy gutted was an understatement, it was a hard 6 weeks, he could only eat blended food and lost a bit of weight, now over 6 months on he tries to eat most things except steak, he is very determined, not put much weight back on yet but it is creeping up a little, don't think it will ever get back to normal but yes he can talk it's just a little different, hope this helps, any more questions please do not hesitate to ask 

Shirley 

Hi,

I lost more than half my tongue in a six and a half hour op. They did not try and rebuild my tongue I don't know why. I was warned prior to the op that I would probably not be able to eat or speak afterwards.  In can't eat and my speech can only be understood by my wife. I had some speech therapy which helped a bit. I suffered minimal discomfort from the op. They gave me morphine but this gave me hallucinations so I asked them to stop. Still no pain. The only discomfort I suffered was from being in a sitting position for three weeks.   I did suffer from a surfiet of mucus in my throat and mouth.  So if your husband has the same problem tell him to have a good cough to clear it prior to radio therapy where he will be laying on his back.

I have a small button a little above my belly button to plug into for liquid food. This takes about four hours a day for three meals. A bit of a pain but better than the alternative.

I was very weak for the first week after the op and getting out of bed to visit the en-suite loo left me panting and shaky. They discovered my blood count was very low and gave me 4 bags of blood.  

Tell your husband to keep his sense of humour. I joked and laughed  with the nurses and did not cause them any problems. This was not easy as we had retired to France and with half a tongue and little  french.

I am 80 now but still  play golf,fish and enjoy my sports car. I try to keep fit and cycle and walk and do weights. I am sure this helped me.

Tell him its just another illness to get through and there is light at the end of the tunnel.

Regards

Colin

PS I just remembered they removed my soft pallet - this affected my abiity to speak and swallow.

Hi Water Beatle,

I was diagnosed with SCC three and a half years ago and like your husband, I had half of my tongue removed and a neck dissection to remove lymph nodes. My tongue was reconstructed using muscle from my arm and then a skin graft from my tummy to repair my arm. It was a huge operation and I was in hospital for about two weeks. 

Advice I can offer is perhaps to expect your husbands speech to be affected at first, mine was pretty good when I came round but a bit 'clumsy' although almost perfect now. You could  take him a mini white board and pens to communicate if he needs it. 

When he able to start eating and drinking via mouth again he will probably get help from a speech therapist as I did to explain how to tilt his head and swallow and be given some mouth exercises to do. I was only allowed to have soups then progress onto very soft foods at first. I'd say it took me a good nine months to become comfortable with eating again but over a year to become confident with it. There's still a lot I wouldn't or can't eat now such as curry, very dry foods such as cake and cheese but you find ways to adapt foods to make them suitable such as some warm custard on sponge cake to help it go down easier or add jam to rice pudding rather than having a doughnut for example. Although everyone is different and my eating habits changed mainly due to the radiotherapy.

When he is out of hospital it will probably be a long recovery so ensure he gets to rest and ensure he stays on top of his pain meds. Don't wait for him to feel pain before taking the meds, just keep up the routine of taking them every few hours. 

He will be fine. A year from now all will be back to normal and you'll both be living life to the full again. 

I wish you the best of luck. It was the biggest and scariest thing I have ever faced but now it all feels surreal!! 

Feel free to ask ask other questions.

Nicola

Hi Nicola

What stage were you diagnosed in? And were u able to eat during or before the process

Thank you 

Kindly let me know as it's v helpful to read all in the process