Hello Expat. I hope you went out today and spent time with your friends from work,   I just want to say that i am recovering from tongue cancer I am not or never have been a drinker or smoker so when " they say" it is a smoker/drinkers cancer they are wrong...I was told that i was in the wrong catagory didnt tick the boxes so we will send for you again in 10 to 12 weeks but absolutly nothing to worry about returned 12 weeks later had an understudy take a biopsy  by this time i had earache as well told no nothing to do with tougne go see your doctor again about your ear its nothing to do with your tongue and again you have nothing to worry about this is NOT cancer we will have results in 3 weeks time. returned to be told we will take another biopsy as we didnt take enough so another one taken.. returned 3 weeks later no its not cancer but it could turn nasty if not treated  we will bring you back and remove it my husband said no  she has been through enough and the earache every day my wife has been coming to you since May it is now September Oh that long...ok go have a cup of tea come back I will remove it in half an hour. Brought back 3 weeks later to be told sorry it is cancer we will bring you in and operate might have to do skin graft. the point im making here is to be told you dont smoke/drink your not in the right catagory is crazy and the earache was caused by the cancer it is the same nerve from ear to tongue this cancer is more common now than ever I dont mean to frighten you Expat but if you are diagnosed with this remember you will get through it its tough but you will get through it...keep your family and friends close as we all need someone to help us when things get tough...and this chatline is a great help too...god bless D.

Hi Expat,

I put some respones to your questions. 

Results wise, I got my results quickly, my consultant sped up the results and I had them within a week of biospy. 

I don't think it would make a difference if you give up bad habbits before a biopsy. But regardless of the result, you should try to give them up anyway if you can.

I had to have time off work for the biospy half a day, so I told them I was having it but nothing more until I got the result.

Cancer does not have to relate to anything we have done, sometimes it just happens. I was 23, hardly drunk and did not smoke. That being said however, now I am recovered, I have the odd drink. You can't live in fear, more so when in the 20's/30's.

Please keep us updated, good luck.

Morning,

Thought I'd give an update a week after surgery. I'm beginning to think the toast straight after surgery was a mistake, it lured me into a false sense of security in regards eating in my opinion, I think a soft diet for the first week would have been the best way forward in hinesight, I ate pretty much what I wanted, I believe this is down to nerve damage & loss of feeling across the right hand side of my tongue, this lead (I believe) or at least contributed to a couple of my stitches tearing & the front part of my tongue looking like a burst mattress I popped up to the loca hospitall walk in centre who spoke to Max Fax dept. They weren't overly concerned & advised to me keep it clean with mouth wash. I did find the irritation to my Uvula (dangly thing at back of my throat) drove me mad for about 3 days, I assume this was due to tube which was up my nose & down throat during op. But this has eased off now & back to normal. I'm on more pills than the local old folks home & rattling, anti biotics, anti virall for massive cold sore I had, ibuprofen, paracetamol which I've not taken alot of, again I believe this is down to nerve damage & my regular medication for my under active thyroid. General movement of tongue is uncomfortable but bearable, my biggest battle is in my head, I have 1 week until test results, obviously I'm hoping for the best but I fear the worst, this feels like the big one, I'll either get the all clear or ??? Anyway, apologies for the long mail but I think it's important to document everything for future reference. Take care all & once again thanks for the support x

HI Stokemale,

Many thanks for your update, even though it doesn't sound as if you're in a great place at the moment. I did think that the toast was a bit ambitious so soon after surgery and, I am so sorry to hear about the burst stitches.

The emotional battle is the hardest one to deal with when you are waiting on results. We all seem to expect the worst at this stage, but fortunately this doesn't often turn out to be the case.

Here's hoping for better news when you get your results next week.

Kind regards,

Jolamine

HinStoke male sorrybto hear about tongue episode uch ouch and ouch. 

Re results from experience look at it this way can you influence the result at this stage  answer is. NO can you do anything about it until you know unfortunately again no so deep breathe look forward this is onky a blip. One year ago today I had my first ent consultant so know what yiu are feeling take strength from me now I’ve been to Spain 3 times once for 18 Fay’s once for 20 Fay’s and last times 8 weeks amd at min on holiday in Wales with family have been out all day and had fish and chips ok washed down with water but hey am alive and here .

comeback tomus on forum at any time don’t getbdown get even .

onward and upwards

hazel x

Hi Stokemale

Sorry to hear of your painfull predicament. Very Ouch.

They give you a hefty shot of painkiller before they wake you up after op,thats probably why you felt ok to eat so soon after op.

Seems that they went further than 5mm as you have several stitches. quite a few folk have their stitches bursting. I think it depends on what part of tongue they are placed.

The two week wait for results feels like an eternity, the time ticks by so slowly.

Try to rest up a bit as you seem a bit run down,cold sore etc. Keep trying to be positive.

Keep in touch x

Afternoon,

Probably my last update for a short while.

So, the news is mixed. They tested the tissue taken out & confirmed no progression into cancerous cells which is the good news. The bad news is the healthy margins they took still show aggressive cells, I got go back in 6 weeks once fully healed for check up but basically they said I'll be up there for life now as I'm deemed 'High Risk' (I've never smoked & not much of a drinker) I asked what alternative treatments are there, he said none, we just keep cutting away!

Until future testing I won't really have any updates but I will still drop in to look out for updates, can I take this opportunity to thank you all for the positive messages & support.

Obvious I'm not out of the woods yet but can't really dwell on things otherwise I'll drive myself into an early grave.

Thanks again x

Hi Stokemale.

Life really hands out the short straws doesnt it!

The thought that they may carry on cutting away is not what you want to hear. I know I was shocked at how much they cut away on me at my op.

Hopefully as time goes by you will dwell less on all this and get back to living a life without the stress.

We are always around pop in a let us know how things are going with you.

Wishing you all the very best and hope you keep well. xx

Hi Stokemale,

This is certainly not the news that we wanted to hear, but I'm glad that it is tinged with good news too.  It's great to hear that there is no progression of the tissue taken into cancerous cells.

I myself have been in your position, admittedly with a different type of cancer, but know how I felt when it recurred a year later, due to suspect margins.

Do please keep us in the loop with any updates and remember, that we are always here for you.

Here's hoping and praying that you will have better news in 6 weeks!

Kind regards,

Jolamine xx

Hi all. Having  a tongue biopsy next Tuesday because of an odd painless swelling that appeared on the left of my tongue a few months back. The only time it would hurt was when I'd catch it between my teeth whilst talking/eating

The swelling has largely subsided now but an odd painless white area is now smack in the middle of where the swelling was, so the doc who saw me two weeks ago put me forward for a biopsy 'better to be safe than sorry'

If pics are allowed I'll show you a few snaps of the intial swelling and the resulting white area. Not sure about the posting etiquette here.

Anyway will let you know how it goes. Some of the earlier posts about how painful these can be are not exactly making me look forward to it!

Hi Klopptastic

Im not too sure about pics being allowed.

Can I say sorry you find yourself in this position. Its such a horrible time waiting to find out.

Some folks find the biopsy ok others not. I had tongue biopsy then later had a palate biopsy I found the palate one much worse as it cant be stitched so takes longer to heal,and the electrocautery gives you quite a thump.

There are a few of us on here so anything you want to ask just feel free to do so.

Thanks Clara. A mod was very quick to email me that no pics are allowed. 

I'll let you know how it goes pain wise and results wise. I'm sure it's nothing because of how fit and healthy I am at the moment.

Thanks Clara. A mod was very quick to email me that no pics are allowed. 

I'll let you know how it goes pain wise and results wise. I'm sure it's nothing because of how fit and healthy I am at the moment.