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.

Hi Hazel. Its me again!!

My husband had his parotid removed. Then the RT left his mouth like a desert. We carried copious amounts of water everywhere we went. I noticed he gradually was drinking less. Around about the 1yr mark his other saliva glands started to compensate and he was fine from then on, but still prefered moist foods.

The downside was gustatory sweating. The nerves from removed gland rejoined and saliva used to leak from side of his head. We tried botox injections but nothing helped. He used to get very annoyed and embarrased with it. He avoided eating out etc.

Take care speak soon xx

Hi Hazel,

I have found the same with sprays, but am interested in how accupuncture goes if you decide to go down that route. I have had dry mouth for 9 years and it is getting worse.

As to being awake at this hour, I'm just a night owl.

Kind regards,

Jolamine xx

Hi Dee

I can understand what you mean about being difficult to chew and break down food to swallow. I am having to take tiny amounts on a fork, food is stone cold its taking so long to eat. Choke easily too. Tongue doesnt shape food properly for swallowing.

I cant open my mouth very far my jaw is very painful and stiff, I hope this gets better. 3 weeks since op and still a way to go healing. I was taking liqiud ibuprofen to deal with inflammation but had to stop as I had stomach pain with it.

I had a notion for scone and strawberry jam oh dear when jam touched my mouth it was more like a lemon. Quite bizzare. Tried a sip of cola it was like vinegar. I thought this would only come with RT.

Sending you a big hug :-)))) xx

Hello Clara its so  good to hear from you, Hope you are slowly getting back to your old self...   3 weeks since your op? you know clara time goes so quick all this discomfort will get a bit better week by week you are doing well trying to eat your scone and jam! funny how you take a pang for things that you used to love to eat then find it so difficult to break down and swallow  I found bread so hard...still do Clara wee tip regarding radio try to drink as much water as you can before and after each session of radio it will stand by you so so much...a lady i met at cancer hospital told me to drink drink drink as much water as you can, I did i truly felt so good for drinking so much my skin was able to stand the 30 doses of radio with out breaking down tho i wouldnt have been able for many more! Clara do wee excercises with your mouth every day more so when having radio gotta keep your mouth muscles moving i was told i would maybe have to get mouth clamp em dont think so! I sang to Adele cd the whole way home! all of 80 miles 160 return every day!! poor husband was tortured hahaa Stay well   Clara speak soon. your friend Dee.xo 

Afternoon all,

Hope you don't mind me hijacking your posts.

I went to hospital yesterday to see consultant about small white spot (about size of small finger nail) on the right hand side of tongue also got some red patches & soreness behind spot. Think doc said he thought it was Leukoplakia but I'm not 100% as it all happened so fast. He said doubt it's anything to worry about but to have a biopsy to be sure & id get a call in few days to book slot, got call today & booked in at end of April, my heads in a bit of a whizz!!!

Hi Stokemale

try and chill out drs most if time do know what they are looking at .in my case my local dr put me straight into the 14 day cancer pathway due to swollen protruding lymph node .best advise u can give you in keep off dr google the information is not regulated. If yiu mustvsurf stick to cancer U.K. sit and  Macmillan. 

Good luck  don’t fret until you have news from biopsy easy for me to say but believe me I’ve been there and done it. Tonsil cancer last year with multiple lymph nodes given all clear in January 

Hazel  come back and update please 

Hi Stokemate

I think we post all over the place anyway so no worries about hijacking.

Probably there is nothing we can say that will calm things down for you. Your Doc would not have said he doubts that its anything to worry about if he thought otherwise. Its no bad thing that he decided on biopsy to back up what he thinks.Remember he sees oral stuff every working day so he knows what he is talking about :-)

Also waiting a couple of weeks for your appt would seem to indicate he doesnt see it as urgent,of course could just be a very busy dept. I was told one to two weeks but they phoned me to come back same day.

Best advice I can give you is dont jump ahead of yourself take things a step at a time. Its very early days 2weeks to biopsy then further two weeks for results of that,so you would be torturing yourself for a month.

Anything you want to ask just ask away we are here to share our experiences,much safer than Doc Google. xx

Dear Clara    Hello how are things going for you? So long from weve spoke I pray you are a lot better than you where and able to eat...I have thought about you so very often...Best Wishes to you Clara your friend deexo

Hi Dee.

Good to hear from you,hope you are well.

I am eating not too bad,so long as I watch what Im having. Things like bread are difficult or near impossible as you said. Its a case of eating what you know you can rather than something you fancy.

I hate the numbness on face and neck I am really hoping the nerves heal and it improves. The skin is stone cold to touch too,did you have that after surgery?

My daughter collected her new puppy today,she sent pics of her, so adorable :-)

I got the house on with estate agent so fingers crossed that they find a buyer,one less worry then.

Well Dee please keep in touch keep well my friend xxx

Quick update from myside, went for my biopsy last Monday 29th April, not as bad as i expected & 1 week on pretty much healed, they said path lab very busy & booked appointment for 4th June to go back for results. Ppl say if it's urgent they'll get in touch before this, guess what, had a call today, results are back & a slot has become free next Tue, im now very anxious!

Quick update from myside, went for my biopsy last Monday 29th April, not as bad as i expected & 1 week on pretty much healed, they said path lab very busy & booked appointment for 4th June to go back for results. Ppl say if it's urgent they'll get in touch before this, guess what, had a call today, results are back & a slot has become free next Tue, im now very anxious!

Try not to worry too much, it's just that someone has probably cancelled - even though my results were negative for cancer, I still had to go in to be told the results, it's normal. They are just filling an available space, I'm sure you will be fine. But let us know how you get on.

Hi try not too worry until you have something to worry about resist Dr google plessecas info on there can’t be trusted you will scare yourself morr

keeo in touch 

hszel

Hi Stokemale,

Good to hear your biopsy was bearable and has healed well.

4th June was a pretty long stretch for an appointment but, having said that I had a fast track referal in NOV and didnt get an appt till JAN. Consultant says clinics at bursting point hmm like a ghost town everytime Im there!

Please dont take on board what people say that if its urgent they will get in touch. It doesnt work that way.

Getting anxious is a very normal way to feel waiting for your results, we`ve all been there so we know exactly how you feel.

I prepared myself to hear `the worst` at my results appt and for me it helped I was very calm and collected Dr kept staring at me thinking I had`nt taken it in(or perhaps a bit dim) Lol

We are here for you,remember anytime you need to chat or vent or whatever.

Let us know how it goes will be thinking of you next Tues.

Hello Clara how are you keeping....so long since we spoke this evening a got a pile of emails  from this page i havent had any for so long  How are you managing with eating Clara  is the numbness in your face/neck any easier yes i did have the same feelings still do 2 years later but so much better than it was. Have you had any luck with selling the house Clara? how is your daughter keeping also? can you send a pic of her new little puppy. stay well speak again soon Clara. Your friend Dee.xo   

Hi Dee

So good to hear from you,think of you often. Eating is ok thats when I remember to eat that is,poor appetite and tongue is a bit swollen so I end up biting it often,painful!

Now I can open my mouth a bit better I see that the back of my throat/mouth is very disfigured no wonder I choke so easily. I was a bit taken aback when I seen it.

No change in the numbness looks like its here to stay awhile! I cant stand touching the skin its an unpleasant feeling but I will just have to grin and bear it.

House is an ongoing nightmare I am moving back in around 4weeks. Estate agent is an idiot or he thinks I am!

Daughter got the all clear after lumpectomy thank heaven.

The wee puppy isnt so wee any more she eats like a horse,she had an operation today to remove a wonky tooth.Poor wee thing. I will get daughter to put up a pic for me.

Keep well speak soon.xxx

Morning,

Thank you all for the responses & positive messages, im sure & hoping all will be ok but just took wind out if me getting call from hospital yesterday, im sure it's just a free slot has come up but certainly gets you thinking. Thanks for being so understanding.

Quick update from my end, my fears for being called in early for results were true unfortunately. Consultant says I have aggressive cells which on a rating of 1 - 5 with 5 being cancer I am high 4, but good news is I couldn't have caught it earlier. I am in Mon or Wed to have part of my tongue removed to hopefully get rid of the bad cells & test for any spread. Yesterday was a bad day emotially but work n the few ppl I have told have been really supportive, *** myself for next week now!!!

Hi Stoke mate

sorry to have to welcome you to our small and exclusive club that none of us really want to be in. But any consolation they’ve found it quickly and are acting quickly as well .All I can say is the U.K. cancer treatment is second to none and a world leader. 

My own experiences are of tonsil cancer and my best advise is keep off dr google stick to cancer U.K. or Macmillan forums otherwise like my incolysays he could diagnose himself dead within 5 mins by reading rubbish online. 

When you know a bit more you can look at my blog www.radioactiveraz.wordpress.com where I do a blow by blow accounts warts and all of my 35 radiotherapy sessions and 2 chemotherapy sessions .but best advise take baby steps go with what your cancer teams tell you .

yesterday would have been bad if any consolation year ago yesterday I got put in the cancer pathway and know exactly how you felt gutted devastated why me !!! But I gitbyhe cancer clear in January and back to living our life s have just returned from 8 weeks in Spain riding my bike walking and in general doing as my oncologist says  live my life  ok still have mouth issues but each day I notice tiny improvements .

keep in touch and goodluck.

onwards and uowards

Hazel x

Hi Stokemate.

So sorry to hear your results.

To be honest having part of my tongue removed wasnt as bad as I thought it was going to be. I had alot more removed from soft palate to tonsil arch and palatoglossal muscle and neck dissection. My throat was horrendously sore but my tongue wasnt bad at all.

Its very good that youve caught it early too. Hopefully they will get good clear margins,in my case half a centimetre clear on tongue margin. If you are very lucky they may decide you wont need radiotherapy so fingers crossed for that.

It is all an emotional see-saw so you will be feeling the affects of your diagnosis for some time to come,but its good that you have supportive folks around you.

Keep in touch and best wishes for next week. x

Afternoon,

Thanks for the replies, I have been confirmed as Wed morning for my op. Think consultant says he will be taking approx. 5mm off tongue to give clear margin. Not sure what to make of it all at the moment, been very up & down with emotions. I know this is not confirmed as cancer but the urgency to get me in & long term prospects fill me with fear. Suppose it's just a case of get through the op, await further tests then take it from there. Thanks again for the support x