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 how are you today...thought about you all day yesterday kept checking this page Im so sorry that the news itsnt good having to transfer to another hospital too...my heart goes out to you clara...shame you didnt let that nasty doctor know how much he hurts you...good job i wasnt there!! with all thats going on why couldnt he be a bit more decent?? From what i read here from kitty it seems a better idea than dissection which i had done which was invasive doesnt help the look of an older womens neck either!! wer all here for you clara between us and the strength of your girls which must be so hard for them also...stay strong our love best wishes xo D.

Hi D

Yes it`s perhaps a good thing he is not doing the surgery he is so heavy handed.

From what little I was told the CT scan they were not 100% about neck nodes so the team decided to err on side of caution and do this further test to look for sentinal nodes. Hmm maybe they are not where they should be. Dont know why I hav`nt had MRI, thats the usual is it not? As far as he said I have to go into hospital on the Wed and have this test then operation on Thurs.He said if test shows up any pos+ nodes the op will incl neck dissection, that in turn will change my TNM so change treatment plan. So its a bit unknown untill then,not ideal.

Well D I am hanging onto your testament that biopsy is worse than glossectomy I will let you know how I find it :-) Consultant drew a picture for my daughters benefit and played it down so very matter of fact as they do. How on earth can he tell how far they need to go for neg margins? I butted in and said that will depend on margins he replied yes very much so.

My younger daughter was so relieved last night that I had agreed to treatment, I told her thats only because of the support and advice on here it has totally turned my thinking around. I think the consultant talking about spread even before any testing had put me in a negative place :-( I am not normally a negative person really.

On my usual witty note..... Perhaps if they do the neck they will do a bit of stretch and tuck at the same time,less skin to staple haha. I won`t be so witty in coming weeks.

Keep well.x

Hi Clara 

deep breaths keep iff google please. 

Ive had 2 radioactive injections whilst I was having pet ct scans the amount of radioactive serum is minute don’t worry about it yiu are only radioactive for aboutv8 hours keep away from children and pregnant women. 

Dont know about the lymohedocgomy but go with the consultant. My brother in law hasn’t justbhad sentinel nodes  biopsy ungetva general,he was out 4 hour sessions later his is melanoma on forehead not h n c I know  . Don’t panic I wasn’t told at my m f t one of my lymph nodes was in operable near my spine apparently at the back of neck dr Sen said don’t worry about it as radiotherapy will get it so I forgot about it  sometimes we have to trust in the consultant.

Keep kn touch

hazel 

  Hi clara good to hear from you, you must be a bag of nerves as must be your daughter too but you will get through this torture..and the sooner the better so many great people on here that are poof that we all have more strength than any of us realise...The couple Radioactive are such an insprieng couple arent they...So you go get that damed cancer by the throat! show it what your made of...its a long road clara but time goes so quick your girls and your family here are right along side you try not to worry you gotta get your sleep rest eat all you can now please stay as strong as you were holding your husbands hand...thats my girl im sure hed say...loads love claraxo        hey clara i asked for a nice pull and tuck the doc laughted said oh dont worry it will be tight!  x

Hi Hazel good to hear from you.

Solid advice as always! You are a credit to this c chat.

Yes scintigraphy has been used for melanoma and for breast cancer for quite some time I think its use is fairly new for h&n. I wont have to worry about being near anyone as Im an in patient for this I am getting taken in a day before surgery for this.

I cant help myself Ive always been an avid reader and like to be informed. I read over 270 books last year :-) If something gets me curious off I go looking. And of course by forgetting to ask the consultant things I then go off looking for answers myself.

Its quite scary how many people are being diagnosed hubbys brother-in-law has just been diagnosed with h&n too.

Yet I have an older sister whom smokes 3pks a day and other than a filthy chest she is fine.Defies logik.

See and get some tan on those legs while on your bike in Espania.xx

PS. I should say late hubby but cant get used to using that  as far as Im concerned he will always be my hubby. I get so annoyed when im refered to on mail as miz or miss as that is the title for divorced women and never married women. I checked lol

Hi D.

As you can see Im a night hawk always have been. I can lie in the mornings dont have any reason not to.

Im trying to keep nerves in check by not over thinking and keeping occupied. IE: got in from Tesco at 10pm and still had to get myself fed.

This is all getting a bit complicated,my older daughter is waiting to go in for a breast lumpectomy (not cancer but lump has grown alot)she has had her pre op check so is just waiting for a date. Hmm wont be ideal if its same time as me :-( I will not allow her to cancel under any circumstance.

Here is one for the What not to say to a person with cancer! My older sister on learning my diagnosis etc said she is going to visit sister in law that evening, Oh my! this will give us something to talk about tonight!  Geez if I ever get foot in mouth like that shoot me! Is it the adage Im a pensioner I can say whatever I like? It brought back a memory when her husband seen my hubby right after his surgery (it was pretty bad looking) he said my god what a mess your in! I had spent days telling my hubby he still looked the same old same old self.

Sorry Im waffling lol. Maybe time up lol

Speak soon. xx

Hi demc

thank you for your kind words. I just wish this site was easier to type on! The numbs of typo mistakes do my head in Lol  that u make  

I decided that h n c want going to beat me or define me having a wonderful oncologistbrrally heloed he just oozes confidence,even if you meet him in the foyer he makes a beeline of coming over give some me a hug I might not have been due to see him but if he see you he comes over for a chat and nit abiytbcancee it’s usually football or family  it’s the little things that’s why I am in her trying to pass my limited knowledge on  didn’t help this week niw eeffeeed back to local ent  n git bumped at first appointment, but went at ut like a dog with a bike We list nearly an entire year last year and I am getting that feeeybto Spain come hell or Hugh water. Lol

have a good weekend every body 

ps wa th out for an announcement 27 July world head and neck cancer day doing a sponseeed bike ride for my cancee hosoital will be setting uo a just giving page in the wirkds if Tesco every little helps  

haZel 

Hi Clara

your late husband is certainly still your hubby and don’t let any ones tell yiu any differently ! yes you are a Mrs as well the Ms does my head in .

i have a sister in law who is just as interfering when my neck was at butbstill worse she kept asking me when was I going to clean it up ummmmmm let me think about it oh Incant !!!!then her friend had breast cancer which is bad but sandra could always eat so she would say to Sandra can eat ,so I shouted one day I dont eat with my boobs !!!!! i eat  with a radiated mouth ! Didn’t shut her up though her hubby just had melanoma off top of head she is scrubbing it to get blood off wonder why he now has an infection in it !

oh well please keep in rouch

h x

Never thought I'd laugh out loud on this Forum but I just did, Raz! "I don't eat with my boobs" - priceless!

And I've been having trouble with the typos as well, I even thought it was my phone and ran an update, it's a bit better now but there are still times when I type and it comes out as gobbledegook. 

I read voraciously as well, Clara, I can lose myself in a book. Usually crime novels ( today I learned what a Glasgow Smile is.)  

Having gone through most of the over-the-counter remedies for sore mouths ( Difflam, Anbesol, Hydrocortisone pellets) without success I am going to try some Orabase Paste - the sore place is getting bigger and I can't keep the mouth guards in all night, they drive me mad .

Sending best wishes your way Clara, and as Raz said, keep in touch. Or rouch even!! ( Sorry Raz I couldn't resist!) 

Hi Bengal kitty

glad I made you lol ! It’s a priceless one I have to agree with !

re sore mouth my oncologist wouldn’t prescribe anything apart from a saline solution of 9gram of salt in a litre of water ,he didn’t believe in any if the propriety ones just the old fashioned ones .He prescribed gelclair for ulcers that was all .

have you tried baking powder one teaspoon to a cup of like warm water ?

your attempt at misspelling nearly as good as mine  lol

Hazel aka RadioactiveRaz x

Hi Bengal kitty

glad I made you lol ! It’s a priceless one I have to agree with !

re sore mouth my oncologist wouldn’t prescribe anything apart from a saline solution of 9gram of salt in a litre of water ,he didn’t believe in any if the propriety ones just the old fashioned ones .He prescribed gelclair for ulcers that was all .

have you tried baking powder one teaspoon to a cup of like warm water ?

your attempt at misspelling nearly as good as mine  lol

Hazel aka RadioactiveRaz x

Hi Hazel.

I came across a couple of interesting things on USA cancer survivors network.

Magic mouthwash isnt really a marketed product as such its a recipe of 3 items lidnocaine,gaviscon type of product and benadryl. Docs write a prescription as lidnocaine is po and pharmasist mixes it up into a mouthwash. An antibiotic for thrush can be added.

Other interesting item was: An oncologist gave a bit of advice to a patient regarding loss of taste, he said to rinse tongue once a day with one teaspoon of sesami seed oil for two weeks. Patients wife wrote that he was beginging to taste some things within 2days and could taste most things within 2weeks and was enjoying food. I am assuming this was post treatment as you couldnt have an oily mouth during radio.

I did warn you Im an avid reader :-)

Hi Clara

i also love to read ,was on a cancer USA blog last night as well !

still wouldn’t have got magic mouthwash prescribed oncologist really didn’t want us putting anything in our mouths throats has like he said anyndlares ups he knew what we weee taking as opposed to lots of different things. 

I never lostbtastebsomwas lucky in that respect have heard tomhelpmwith lackmofbsaliva swirl olive oil round the mouth dontbgancy that though. Lol

keep in touch Hazsl x