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 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

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.

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

Hi

I can understand your worry and concern. Its far better to be treated quickly believe me. My tests and operation seemed to take forever and I had been told my cancer type was very aggresive. After palate biopsy I was told that hard palate was clear but didnt know anything about soft palate till after op So had it spread in the two months between tests and op?

If he only takes 5mm you will be fine and will recover surprisingly quick. Be guided by what Dr tells you after your op. Lifestyle changes etc(if needed). I am sure he will tell you your long term situation will be fine too. Do try to stay positive,this time next week it will be behind you.

Take care good luck and best wishes for Wednesday.x

Hi good luck forcSednesday keep in touch when op over and yiu feel well enough to post 

Hazel 

Hi Stokemale,

I wish you all the very best for your op tomorrow.

Thinking of you and hoping that it all goes well.

Kind regards,

Jolamine

Oh No Have just caught up with this - so sorry, Stokemale, wishing you best of luck for today, of course you're worried but you have a positive attitude, as you say it's been caught extremely early. And a positive attitude carries you a long way - I have nothing but respect for the amazing people on here who have been through so much yet still offer support and advice.

Best wishes Kitty.

Afternoon  all,

Quick update, im currently lying on my hospital bed, the staff have been amazing. Went in for surgery at 9am out after an hour, eating toast n coffee by 10.20. Not at all as bad as i imagined, I hope this gives people reading this post some positivity going forward. I suppose it's a case of waiting couple of weeks for test results, thank you all for your positive messages & support, I'll keep you posted.

Hi Stokemale,

High 5 to you. I am glad to hear that your op is behind you and that it all went well. I certainly didn't expect you to be up to tea and toast so soon after!

I hope that things continue to go well and, that your pathology results are favourable when they come back.

Kind regards,

Jolamine