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 clara56, the sugery was nothing compared to the pain of   biospy... was worst pain ever! not the cutting of right side of my tougne but when the pain killer that was injected by understudy wore off well i went crazy never ever will forget the pain id rather go through 24 hrs labour again just cant discribe the pain couldnt talk, eat, swollow, run about the house like a mad women!! also trying to swollow pain killers had to push tablets right down my throat  as i couldnt drink water didnt eat for  days but i guess it is different for every one  had op to remove more of tongue also had to remove nodes in my neck i got home 3 days later as i couldnt eat any thing in hospital my tongue was twice the size when tougne is cut it also affects how you swollow  i can eat now but it is only soft foods cant chew bread as well as used to either never mind american hard gums!! lol... cant speak as well as before cant shout either! husbant says it great!  but hey 2 years later im here no medication doing so well...the cancer hospital is a different world...so many people going through so so much more than i ever had to...dont you feel guilty about eating clara get it in you and enjoy every one of those gums...just say 1 for me one for dee! lol stay strong mrs! xo 

Oh Lord You two have really been through the mill! But have kept your sense of humour and I salute you both. 

I also did the bowel cancer test and it came back negative. But ( runs and hides) - I cancelled the mammogram. I know, I know. But I am not very well blessed in that department and when I got called for the first one, they could hardly find enough flesh to squeeze between the plates and it was very uncomfortable to say the least ( imagine a test for testicular cancer where they clamped the organs like that!! But we women are expected to grin and bear it.)  

So although as a health care professional myself I would always advise regular mammograms, I'm afraid I don't take my own advice and rely on self checks. Any lump which might develop would be very obvious in my small bosom.  I just know I'm going to get slated for saying that...

 Hi kitty hows things going for you? have been thinking about you ...how youve been getting through...so you wont go for your mammogram eh??? what are we calara myself and all the other ladies on here going to do about this...if i asked you on behalf of all us ladies to please go would you kitty...i know what you mean about the squeezing cause i dont have much either but i just told myself no it ant sore...it really isnt compared to what you have just been through kitty and i know when i got my last radiotherapy treatment i shut my front door and thought thats it never again no more...but you know what kitty life is so short so we all gotta do what the other one gotta do to stay alive be with our loved ones just that little bit longer...maybe get another appoinment made in few weeks time give yourself a break between all else that is going on...but please stay intouch cause wer all on the same boat here looking out trying to help each other...stay strong xo

Bengalkitty

I had this and my Tonsils out at the same time just 10 days ago, I can say that the pain is stomach churning I am coming through the worst now and just chewing again. I too thought I had a high pain threshold but the pain of this was like no other. 

I hope you get the results you want, I will be starting chemoradio therapy soon, just want it out the way now so I can get back to living and not worrying.

X

Hi Kitty,

I just happned to log in today!

The pain post op was not as bad as the biopsy at all. The biopsy was very painful I could not eat for almost a week. I think when they carried out the main operation on my tongue, they used a laser. For the a biopsy they used a scalpel as far as I know. I was told the laser burns and cuts off the nerves which really decreases the pain. A knife does not, hence it being more painful for the biopsy. Overall the tongue operation was not too bad, it is just a matter of getting used to the new feeling in your mouth, slowly getting used to eating again and being patient why it heals. It’s been four years and I still get occasional tinging sensations in my tongue, the nerves are still healing. It just takes time like everything. Speech has been the main thing I have to work on constantly. You find yourself trying to talk like you still have a full tonuge, and have to remember to speak slowly and make sure to make full use of your lips to improve speech. But I can't complain, it doesn't effect me too much these days.

All the best!

Hi Everyone Still not getting notifications so glad I logged in this evening.

It's really reassuring that other people found the biopsy painful, now on Day 8 and it does seem a little better today, although I still can't manage a full meal, I'm ravenously hungry but the pain just stops me from eating as much as I want to. When I'm not eating my mouth is only mildly uncomfortable now so that is good although I'm scared to leave off the anti-flammatories.

I get my results next Tuesday, am thinking that no news is good news, if they had found anything sinister I assume I would have been contacted by now. Unless they are really busy and my sample hasn't been evaluated yet.

It's amazing to hear from so many positive people who have been through so much but are upbeat about it and want to give advice and encouragement to other people. 

And demc - thank you so much for your concern, I promise once I've got this mouth thing sorted I will look at making an appointment for a mammogram :-)

Hi  kitty great to hear from you! good to hear your able to eat gotta make up for all that time you couldnt...i was told to eat all i could even try to put on a bit of weight while i could because when time came round to getting op i wouldnt be able to eat again so id have that bit of extra weight to lose...and it worked tho 2 years down the line i just cant eat the way i did just small children like portions are now big enough for me i have never been any more than 10- 11 stone now im around 9 stone ...not happy about it but i just cant eat the smae or even enjoy eating food  gotta be soft easy to swallow always need water to wash it down...sugar drives my tougne mad burning kinda feeling...but hey thats not a bad price to pay compared to so many many others...enough about me kitty stay well and let us know how you get on...i understand what you are saying about your appt for mammagram will nag you later on in the months ahead tho! lol stay well kitty.. 

Feel really sad that you don't enjoy your food like you used to, demc, I've promised myself that when my mouth is back to normal I'm going to buy myself a 6 pack of Walkers cheese and onion and eat the lot! All that salt will do wonders for my blood pressure but I don't care, 9 days without crisps is just too much! 

The biopsy area is now covered in white skin so I am thinking that it is healing, a lot of  the problem is that I don't really know what to expect, I don't know how the sore area should look, it's still very swollen. 

Just glad that the worst of the pain is over. Although eating cheese, chocolate and nuts makes the area hurt - some of my favourite things ️

  Hi kitty great to hear you are back to eating eyeing up the cheese and onion crisps! kitty im not sure what the biopsy area looks like i cant see mine! cant hold my tongue out far enough to see it! id have to take mine out and turn it over! lol yes im sure ur tongue  is still swollen...i remember day after my op the doctor told me id have to get tube put in if i didnt start to eat! my tougne was so swollen i couldnt talk never mind try to put food in break it up und try to swallow! only when you have been through this can you understand...yes i can manage chocolate cheese lovely but no way nuts! hope you are keeping well kitty best wishes...

Not long now until my results. I'm gong to discuss SLS toothpaste ( sodium lauryl sulphate) with the Consultant - shortly before the lesion appeared, I had problems with sensitivity in one of my teeth and my dentist gave me a  sample tube of Sensitive toothpaste and said rub that over the tooth before you go to bed. Being me, I plastered the whole area with the stuff. After the sore appeared, I googled Mouth Ulcers Due to Toothpaste and found that SLS is possibly implicated in   ulceration. I can't remember the time frame between applying the toothpaste and the appearance of the lesion, but am now wondering if it was some sort of chemical burn . Or am I grasping at straws......

Not long now until my results. I'm gong to discuss SLS toothpaste ( sodium lauryl sulphate) with the Consultant - shortly before the lesion appeared, I had problems with sensitivity in one of my teeth and my dentist gave me a  sample tube of Sensitive toothpaste and said rub that over the tooth before you go to bed. Being me, I plastered the whole area with the stuff. After the sore appeared, I googled Mouth Ulcers Due to Toothpaste and found that SLS is possibly implicated in   ulceration. I can't remember the time frame between applying the toothpaste and the appearance of the lesion, but am now wondering if it was some sort of chemical burn . Or am I grasping at straws......

  hi kitty please let us know how things go Tuesday..dont be worring to much mrs...have a lovely weekend get plenty sleep too...listen to me eh...just hopeing its a reaction to the toothpaste speak soon goodnight.

Hi Kitty.

I will be thinking of you on Tuesday and keeping my fingers crossed for you.

Have you had the ulcer for quite awhile?

I came across a website for dentists it had a huge list of benign oral ulcers I was really surprised how many there is. That made me hopeful after reading that. Stats say 90 out of 100 are benign.

Ive looked at 100s of photos of both benign and cancerous lesions and not one looked anything like mine. Consultant took photos of it so it may end up added to Glasgow Dental College picture gallery of oral cancers (I hope not). They supply complimentary pictures to training hospitals.

I have some autoimmune conditions(I hate the word disease).One of which causes oral problems like glossitis and ulcers and if your unlucky stomach cancer. So Im no stranger to ulcers. This one is a tricky one,not easy to see and giving no pain or symptoms. I only noticed it when investigating a cracking sore throat I had at the time.

Hope to hear some good news from yourself take care. xx

PS. I tried tomato sauce crisps last night they tasted awful and stung like crazy :-(

 Hello clara how are you keeping i have just been reading your first post so sorry to read all the problems you are facing alone....must be so hard having to try get through this dame thing yourself dont know how id cope...but hey girl you stay strong keep busy clara you are in my thoughts speak again soon x

Hello Dee

Good to hear from you.

I was telling my youngest daughter about these cruk chat pages and how good it is to be able to converse with people that have had this journey or waiting to. I always say its good to talk.

I know they said around 3 weeks to heal on palate but it gets you down. I keep thinking my mouth was fine a month ago and now its holy murder! And the worst part is still to come.....

Its only a few days now till I see consultant and get the fuller picture. I noticed they took the biopsy from the soft palate and not the hard palate where the leukoplaktia is.I hope this isnt an error and have to have it done again. I would run up the corrider like a mad thing lol that would raise a few eyebrows :-)

Keep well speak soon.x

Tomato sauce crisps! LOL as the young ones say... My mouth is so much more comfortable now although I won't be going near any pickled onions just yet.

Yes, it's good to talk and to know that what you are going through has been experienced by other people - I almost bothered the Hospital as I was so alarmed by the pain as the caresheet they gave me said the pain would be managed by paracetamol and ibuprofen. But after chatting to you, DEMC, I realised that the pain can indeed be severe - saved me from wasting my time and theirs( plus a £3.00 parking fee at the Hospital!) 

So in hindsight, if anyone has a planned tongue biopsy ( mine was offered on the day and I had no time to think about it) I would advise that you start your painkillers before the procedure. Paracetamol doesn't cut it, you will need co-codamol for the first few days plus an anti-inflammatory and an anaesthetic gel containing benzocaine. Who needs Slimming World, just have a biopsy on the side of your tongue!! :-)

A friend is coming with me on Tuesday, I'm sure all will be fine, will be sure to let you know. And then we will wait to hear Clara's news, sending very warmest wishes Clara, will your daughter be going with you?

Xxx

Hi Kitty.

So glad to hear you are on the mend.x

I had to smile about the young ones use of LOL etc my daughters and I use a chat app and I have had to get used to the terminology. I asked once what does PMSL mean I felt dumb for asking :-)

I was the same a few days ago I was going to phone the clinical nurse specialist at the clinic,they have given me a list of people I can contact if needs be. I thought this has to be infected but I thought give it a couple of days see if it settles.

Its so maddening your body is crying feed me and your mouth is saying No! Ive lost 4lbs but its not a big deal as I overdid it all at festive season.

My daughter said to cancel mamogram but Im taking Dee`s advice and going for it. I asked radiographer doing CT scan if breast lumps would show up and her advice was, only if any lumps were big enough and she advised to still have mamo.

Im glad you have a friend going with you on Tuesday. Yes my daughter is coming with me on Thursday.Car parking is an absolute nightmare no matter what time of day I think she knows I would lose the plot trying to find a space.

Again good luck and speak soon. xx

Sorry Clara Didn't respond properly to previous message- had ulcer for 4 weeks when GP sent me to the Hospital. Normally if I get an ulcer it's gone in a couple of days. I think it was  not being able to eat chocolate because it hurt too much which sent me to the doctor if I'm honest! 

I did post a picture on here when it was at its absolute worst but one of the moderators sent me a gentle reminder that photos aren't allowed and so it was removed. Have started a course of antibiotics since then and it is much improved. ( Thank you to Anastasia for suggesting I should contact my GP if worried,good advice as it turned out  :-) )

Is anyone else having trouble with predictive texting on this site? It keeps posting gobbledegook, it's taking me twice as long as normal to type a post as I have to keep deleting the strange words it's selecting for me. Maybe it's my phone, have just run an update and it's marginally better but not right. 

Will be thinking of you on Thursday, Clara, I'm sure Dee will too xx

Hi ya kitty I see you only had your ulcer about 4 weeks so happy you went to doctor as soon as you did kitty that has got to stand by you as i had my little red sore on my tongue over 6 months my husband told me over and over get to the doctor! its only a wee red thing not even sore i would say...if only id have went sooner...only when it would feel like a burnning sting did i think maybe i should go...soon as doc seen it he red flagged me                                                                                                                             .I  was seen 10 days later by a so called 

Specialist  that re assured me for over 5 months that it was nothing sinister to worry about because i didnt drink/smoke didnt tick the boxes! get mad just thinking about him...Kitty are thoughts prayers are with you for Tuesday nice to know wer all here for each other...will send clara  message too let her know same for Thursday...best wishes kitty..x

Hi Kitty.

I think you must be in a pretty good health care region as they seem to have been very timely with you.

I had recently moved house and tried for 6weeks to register with a GP and Dentist. So it was around 12 weeks before I was seen by a dentist and a further 5/6 weeks to get my 1st hospital appt. Its around 75days from referral up to my Thursday appt and it feels like an eternity.

I noticed the other day a woman posted a picture of her breast,she wanted peoples opinion on orange peel effect I wonder if mods removed pic.

Im curious do you have a Bengal? I adore cats, dogs too. I cat sit for my daughter she hates going back home though. I say its because she enjoys the peace daughter says its because I pamper her.

Take care speak soon. x

Hi Dee

Oh my just read your msg to Kitty.

So you were about a year before a diagnosis. It doesnt bare thinking about no wonder you get mad thinking about him. Pity you didnt excercise your rights to a 2nd opinion back then. Mind you we are all wise after the event :-(

I know what you mean about tick boxes in the nhs, they dont think out of the box!

I think its the sores that are not sore should ring alarm bells sooner.

Take care speak soon.x