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 Bengalkitty, 

I noticed you mentioned you may not be receiving email notifications so I just thought I'd quickly jump in to see if I could help.

I checked your profile and can see you are set up to receive them so if they're not in your inbox it may be worth checking your junk or spam folder. If you find your notifications in there I'd recommend marking us as a 'safe sender' so any future emails can then go straight to your inbox.

If this isn't the case then do get in touch with us about this just here.

Kind regards, 

Steph, Cancer Chat Moderator

Thanks Steph, have clicked on the link. 

Hi Bengalkitty,

Thank you so much for your reply and kind words. I dont get email notification either I just pop into the threads Ive been on and have a look for any replies etc.

It sounds like your biopsy has been a horror one. My stitches started to break down by day 5 and both biopsies healed really well. Mind you Ive had a horrible 4 days with the latest palate biopsy it was so painful I thought it must be infected.But it has improved by yesterday I could eat sunday dinner albeit very slowly.I find if you take a painkiller 30min before eating it helps alot.

My late husband had parotid gland cancer so visiting maxfac clinics with him for 5yrs I seen and learned an awful lot so I kind-of know what Im looking at even before looking into that Dr Google with the scary stuff.

I know what you mean about junior docs Ive had one really good 2nd not so good:-)

Its another 10 days till I see consultant for test results and stageing etc. In the meantime I got a bowel cancer test kit in post and an appt for a mammogram. Happy days! I maybe glow in the dark soon lol.

One thing Im disapointed about is that I am aware of oral cancer having kept a close eye on my husbands mouth and neck and I only spotted this tumour because of a nasty throat infection as its in a tricky area. All the Drs that have seen it say the same thing. So if it has spread it mustve done very quickly. When the consultant took photos of it he blinded me with the flash he is also very rough pulling tongue out to its max like its elastic or something.

Take care and best wishes xx

Dear clara...my heart goes out to you so sorry to hear you lost your husband to cancer..and now your having to deal with it all again...you sound like a strong women with a great sense of humour! Such a shame that your doctor has been so rough its not nice...funny you mention your bowel cancer kit  i sent mine off the other week had reply which was great news had great news from mamagram! so keep your chin up Mrs i know its not easy...  so keep yourself busy with lots of good company wer all here wishing you all our best wishes...xo

Hi Demc

Good to hear from you!

In your msg to Bengalkitty you said biopsy was worst pain,so you felt less pain after surgery?

My husband and I both had great sense of humour people used to say we were like best pals.

I am feeling just a wee bit guilty that I am managing food better than other poor souls on here. I have been craving for toast, so today I had some it wasnt easy but I did manage it :-) Daughter asked today if I wanted her to buy some american gums I had to admit to already having 3 bags of them waiting for me.

Take care and best wishes xx

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 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!