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.

     Hello Clara great to read you are getting through the hellish time you have had,  getting back to normal takes a while but you will get there! yes lots of drinks and food dont seem to taste the same even 2 years later i dont enjoy my food at all the way i used to...infact i dont eat that much any more can go a couple of days with out eating if its not soft then dont want it because i find it hard to break it down... think it affects every one differently.       God Clara to have your palate removed up to tonsil piller!... how do you manage to eat, swallow food?? I couldnt even drink water properly had to take small sips...you are doing so well you really are... keep it up Clara you will get ups and downs too we all have, but wer all here for you lots hugs best wishes always> your friend dee xo

Hi Hazel,

It's just as well you were as fit as you were last year. I'm sure that all that biking in Spain has helped to pull you through the nightmare you've endured in the past year. Long may you continue on this onward and upward path, or road in your case.

Kind regards,

Jolamine xx

Thank you am off to bed now , been reading up on parotid gland as my right one isn’t producing thin saliva and untilmitbdoes if it does dry mouth is here to stay .so thinking about acupuncture when we get home willing to try anything.

Night night

 h   

Hi Hazel,

I have had a lot of bother with dry mouth, due to medication. Have you tried any of the sprays or lozenges, or found anything that works? Please let me know how acupuncture works for this. I have never heard of it being used for this condition.

Sleep tight!

Kind regards,

Jolamine xx

Hi Jolamine

i have tried all the spray including buying ones in Spain for dry mouth 1 they all taste of fish oil ! Lol which is revolting 

2 get no more than a few mins relief from them

I use bioxtradry as a mouthwashwhuch is £9 online but eventually I got dr to prescribe me one a month at a time after a battle but uve has that with my drs all the way through all I get is budget budget .

mine isvaused by the radiotherapy that was targeted through the parotid gland not chemo or meds I know atvtheb2 year stage whatbuvw gornis likely to be as good as it gets . 

Re acupuncture will let yiu know an alternative therapist recomenened I try it  when we get home I will look around.

ps why are u awake at 0220 !

h x

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!!!

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!

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 Clara how are you doingv? We are back in U.K. now wet n garden needs weeding   Had eNT appointment today camera up nose all good no signs of reoccurrence down there. Hope to hear  from you soon 

h xx

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.

Hi H

Good to hear from you. Thats one thing that doesnt fail in the UK Weeds! But nice to be home in your own place ye.

So happy that your appt went well :-) Its so good to hear positive news!

Take care keep well xxx