Hi All,

I found this forum and wanted to introduce myself. I'm a 32 year old male who has recently been diagnosed with tongue cancer. My symptom was a white patch on the side of my tongue that didnt go away. A biopsy was performed which has revealed what my consultant calls "a small tumour" I am scheduled for a CT scan next week and a meeting the following day to decide how to treat it. The consultant said it was a grade 2 cancer.
My consultant said that he didnt think it had spread, and i would not need radio therapy or chemo, just a surgical procedure to ensure that all the cancer cells had been removed from the side of my tongue. I asked him about losing half my tongue, and he said that would not happen but i would most likely end up with a banana shaped tongue. He seemed very positive about my treatment however i cant help but fear the worst after reading peoples experiences on here. I have also had a single swollen tonsil for at least 8 months on the same side as my tongue tumour, so i am very concerned about this. This will be biopsied when i have surgery.
I was wondering if anyone here has had a similar experience to me, and just had tongue surgery to remove the tumour, with no chemo or radio therapy?

To be honest i am still in total shock about what is happening although im not entirely surprised with the diagnosis. I have to say the NHS have been excellent so far, and i cannot fault the service i have been provided at all.

This message has been edited. Last edited by: newdaduk,

Hi!
Sorry you've felt the need to join us here but you will find people who have all been through the same or similar traumas as yourself. Speaking from my own experience I had a tumour on the side of my tongue and had surgery to remove it. My tongue is a little banana shaped as you mention, but I can speak coherently and no one would really know what had happened to me most of the time by just talking. My cancer had spread and I was given radiotherapy and chemo and that was punishing but I'm still here and coping with life 3 years on. All the problems I have been left with were the result of the radiotherapy so if you aren't having that then you have a lot to be positive about.

One other thing I will say is that everyone is different and their reaction to treatment can vary quite a bit, but everyone here will help with their own experiences - you are not alone and help is at hand! The people on this site helped me through the worst of my treatment and you've done well to sign up. Try to stay focussed on what you know and can cope with and try not to worry about uncertainties or unknowns, good luck and stay in touch.

Peace, greetings, and welcome!

Your situation sounds similar to mine. I was diagnosed with stage 2 tongue cancer in 2005; my surgery was 6 1/2 years ago today. Like you, I didn't need radiation or chemo, but we didn't find out until a couple of weeks after surgery. That was a happy day.

My doctor talked about rebuilding my tongue from the minute he came into the exam room; the "banana shaped tongue" was never an option. It's strange to have a two-tone tongue, but it works every bit as well as the original did. Has your consultant discussed resection with you?

You're not alone in this.

Julia

Hi,

Thanks for the reply.

My surgeon when i saw him said that i would not need reconstructive surgery, but my speach would be effected. He believes it will return to normal in time though, with therapy. I did ask the question about flaps etc and he said that i wasn't going to be needing that. I think that the tumour was actualy taken out when they did the biopsy, and the plan is to go back in with surgery to remove and residual cells that have remained behind. I was told i would be in hospital over night.
I thought i was coping really well with this diagnosis but i think it really hit me last night and i felt very frightened and upset. I have recenetly become a dad for the first time, and im not ready to go yet! I guess its all the waiting and the unknown that is the most frightening.
Its nice to have somewhere to come to like this though to speak about your fears.

hi newdaduk

your fears are perfectly normal and understandable. my son was 3 when i was diagnosed and i had exactly the same fears, and in some ways my worries were more to do with him and not seeing him than anything else but it sounds like your consultant is on top of the situation and you are in good hands. these are hard times for you but you will move on from this, good luck with the op and let us know how you come on .

Hello newdaduk

I've also had tongue cancer and so can empathise with your feelings of anxiety.

Although my tumour was very small, because of its location and that fact that it was growing near a nerve I lost a sizeable portion of my tongue which needed a reconstruction. It sounds like your tumour has been caught very early before doing too much damage which must be quite reassuring.

You have come to the right place to get plenty of support and advice as I have found in the past.

All the best for your operation.

Best wishes
Wendy

Thankyou all for your kind reassuring words.

I am scheduled for my CT scan early this week, so i will let you all know how i get on. For the moment i am trying to put it all to the back of my mind until i know for certain what is going on. I find keeping busy the best answer. I have been doing all those jobs around the house i have been "getting around to" for years!

Take care all.

Hi all,

Well i had my CT yesterday (very odd feeling especialy when they inject the imaging fluid) and saw my consultant today.

The Scan is clear - the nodes in my neck are slightly enlarged, but as its on both sides the consultant is not concerned about this. I will however be kept a close eye on.

I will have surgery around the area where the tunour/biopsy was taken to ensure i have a clear margin. I do not need radio or chemo at this stage, and i should not need tongue reconstruction.

I have noticed that right at the rear of my tongue (where the large taste buds are) it is quite red, and feels slightly sore. I also have a slight ear ache and a bad smell. Im hoping its not a spread of the tumour. I showed the consultant and he did not seem to think that it was anything to worry about. (then again he said that about the original tumour when i showed him) It could be that i have made it sore from sticking my tongue out looking at it (something i have been doing a lot) and it is on the scar where the original biopsy was taken. I will keep an eye on it, and if its still bothering me in a week or so when i go for surgery i will speak to the consultant again about it before i go in.

I guess it just a case now of waiting for the op

hi

thats good news (well as good as it could be i guess), keep positive and good luck. keep in touch

Hi,
I´m happy for the good news. I had also a tumour on the side of my tongue and had surgery to remove it, plus the surgeon extracted nine gangliae to examine. There was no metastasis, and I did not need any chemo or radio. This was nearly two years ago. My tongue is a little banana shaped, just as you said, but I can speak clearly, almost as fast as I used to, and no one would guess that I have 2/3 of my original tongue. It took a while to be able to eat more than soups and mashed pumpkins, but I am back to steacks, and even crackers.
However, each control exam is rather anguishing. I think that we, the members of this club, learn to live knowing that we are not safe after one year, or two, or ten... But we also learn to cope with it.
All the best
Shoshana

Hi Shoshana,

I read your posts as you situation is indeed as you already say similar to mine. It has helped my cope with the diagnosis and has given me hope that there is light at the end of the tunnel. There are people out there who have it a lot worse than me.

I still have the sore on the very back of my tongue on the right hand side. Its right where the large taste buds are, and looks slightly crater like and is red. It seems to be getting worse. The consultant told me that it was just a ulcer, but i seem to have lost my faith in him slightly as he told me the orignal tumour was nothing to worry about and was not going to do a biopsy. I am worried it could be another sign of the cancer and things arent quite as straight forward as we think.

I am also slightly concerned that my neck nodes are being left. I was fully expecting rad treatment or at least a biopsy on them to see if there is anything in there. Having read other peoples experiences it seems the normal practice to do.

Perhaps i am worrying over nothing. Thanks for everyones support and posting. Its good to know theres a place like this to come to.

Hi newdaduk

Your consultant is the expert and should know whether it is an ulcer or not.

However, I don't wish to worry you but it may be worth pursuing it especially if its been there for longer that three weeks. I wish I'd known about the 3 week rule when I was walking around with a tumour on my tongue for at least eight months after firstly having it misdiagnosed as just an ulcer by a doctor and trying all sorts of remedies to get rid of it. He even joked that it was because I had been telling too many lies! It was when I went to see a different doctor some months later who knew exactly what he was looking at that I was immediately referred to see a maxillofacial consultant. However I don't blame the first doctor that I saw as they are not that expert with mouth sand realise that I should really have gone straight to see my dentist with my concerns.

Not sure what the procedure is with the lymph nodes, I had small amount of mine removed at the same time that they did the reconstruction, followed by radiotherapy as a precautionary measure. Just assumed that they do the neck dissection as a matter of course, but it does seem to vary.

All the best
Wendy

Hi newdaduk

As Wendy says, your consultant is the expert. Small variations of the tongue do happen. This year I had a small white lump exactly where my tumor had been extracted, that lasted two months, until my surgeon decided to do a biopsy, that was luckily negative.
However, it is advisable to follow the three week golden rule. If you wish you can ask for a second opinion, and consult with a head and neck surgeon.
As for the lymph nodes, they have extracted and dissected nine of mine when they took the tumor off. No radio was considered necessary, but it seems to be different according to the cases.

All the best (and again, please excuse my English faults)
Shoshana

Hi All

Just thought i would write a short update on here. I had my surgery on Monday where a portion of my right side of tongue was removed along with some of the underside, and one of my tonsils which was swollen. This has all gone off to pathology and i have to wait 2 weeks for the results. fingers crossed. Physicaly im not feeling to bad considering i have a gaping hole in my tongue, and most of my mouth held togeather with stiches. The surgeon was quite surprised to find me sitting by the hospital window 5 hours post surgery drinking a cup of tea! I managed to eat a yogurt and jelly as well although it took me best part of 2 hours!

One thing i have noticed is that when i chew now jaw makes this awful noise like bubble wrap crunching. Im guessing its where my mouth was held open during surgery and may have forced it. Hopefuly this will return to normal in time.

Hello Newdaduk!
Well done you! It was this time last year that I had my tonsil out and a year to the day almost that I got my diagnosis. I found the pain got worse around the 6 - 10th day, then improved quite quickly.
My jaw now clicks - which I can both hear and feel. Mine is due to radiation I think. I can't remember if it did it post surgery.
Good luck.
Vicky