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.

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......

  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 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.