hello nicola, first of all the most important thing is staying positive,yes there are horror stories out there but the number of people ive meet over the past 6 years with the same condition have come through it to lead a near normal life ,obviously i understand your concerns especially as you have a young daughter ,which is why i suggest not to hide your symtoms,the more people that now will be able to help you when you need it, true its going to be a rough ride the next couple of years but you can pull through this, if theres any info on what the proceedure is for the op or the possible follow up treatments after please let me know , i was stage 4 tongue and lymph in neck ,im 6 years post op and although at times its been difficult im here and doing my upmost to lead a normal life again ,you can too,please let us all know how things go all the very best x

Dear All

Finding it hard to have to be posting here at all but my husband is waiting for treatment for tongue cancer, surgery at least (including some lymph node removal) and then maybe radiotherapy if he needs it. I'm focusing very much on practicalities at the moment... he's a teacher so speech is important to him, how long in your experience before he might be able to get back in the classroom? Should he be thinking after Christmas or longer (assuming things go well). What impact would radiotherapy have on his speech recovery?

Thanks :)

Hi SMSM

Sorry to hear of your diagnosis. I'm 16 months out from completing treatment - surgery and radiation. Mine was T3N0 oral tongue cancer. I had a partial glossectomy and free flap reconstruction of about 25% of the side of my tongue. Mine was diagnosed in the same way, by my dentist after having an ulcer that wouldn't heal. I was 39 at the time and it was also P16 positive. 

The way I use my tongue has changed but I've been able to adapt and my eating and speech is almost normal. I don't think most people can tell. My speech was about 90% back to normal within a few months of completing treatment. I have an occasional lisp on certain words but it's not bad. Only about 10 months after treatment I presented on a work webinar and I wasn't worried at all about that. 

I hope that gives you some reassurance. The treatment was tough but i bounced back pretty quickly afterwards. Let me know if you have any questions. :-) 

Hi SW80

Many thanks for your prompt reply and I'm very happy about your recovery and going back to normal. I will hopefully get further details about the size of surgery this week but your post is really comforting. Did you see any speech therapist and was that useful?

I am also planning to have a chat with my employer this week once I get further clarity from the doctor. My work requires alot of calls and online meetings so will need to disclose this to them as I will not be able to get back before my speech is back to somewhat normal. 

Many thanks again - you have no idea how comforting your post and this thread are to me.

SMSM

Glad to hear it's helpful.

Yes seeing a speech therapist was good, but mentally as much as anything. The speech therapist will tell you that far and away the best approach is to get right back in the saddle (as soon as cleared by doctors) - speak and eat and challenge yourself as much as you can, as speaking and eating are the best exercises for speaking and eating. 

Have they told you what your surgery will involve yet? 

Thanks SW 80 - thats very useful and hopefully with excercising I will be able to have a speedy recovery.

I'm getting my MRI and CT scan this week and my appointment with the Doctor is next Wednesday (Jan 6) and that's when I'll know exactly the treatment plan. 

Doctor's initial thoughts is that surgery is a must expecting a third on the left side of the tongue with free flap reconstruction. I'm really hoping after imaging that less is required to be removed and keeping positive thoughts during the waiting time. 

They won't know if radiation and other treatment is needed until post imaging and perhaps post operation as well.

Wishing everyone a blessed and healthy 2021!

SMSM 

Wishing you all the luck in the world and A very big happy new year , please let us know how things go   ️

Hi Im not having much luck posting tonight after long posts they disappear. Geez so annoying!!

I was in same situation as yourself so feel free to add me as friend if you wish.

Dont be so worried as t1n0 is the best of the worst. They have found it early and thats the best place in a bad place.

P16+ or neg should be in your biopsy results so do ask at next appt, dont be shy to ask its your body.

P16+ is treated differently in throat cancer as opposed to tongue cancer. It is very rare in tongue cancer.

Try not to worry too much that your treatment will be as radical as others have had. Your team may decicide surgery only and thats the easiest to recover from.

Best wishes and thinking of you on your journey xxx

Ps sorry for any spelling errors etc eyesight not so good! xx

Hi 

I've just come out if hospital after having partial glasstomy in left side of tongue with skin graft from left wrist. I also had left neck done for lymph nodes. 

I was allowed out if hospital after 12 days as was doing so well. However when at home now I'm struggling with the puréed 4 diet.

I'm back at hospital on Tuesday awaiting results to see if further treatment us required.

Can anyone tell me how long it took for your tongue to not be swollen and how long to eating normally

Also what radiotherapy and chemo is like 

Thank you

Hi I'm now two half years in from surgery and was lucky did not need chemo or Radio therapy , unfortunately surgery does take a While to get over , we all heal differently , but it's not a quick recovery takes time , im still struggling with trauma now , but we all heal differently , I had partial glssrctomy and lymph nodes from neck too , if I'm honest just take it day by day , get support if you can , I'm now with A group now that we have zoom calls on a Monday if you are intrested , it's a mouth cancer foundation Charity , I can give you email address , but will send it privately to youre email account if you want it , sll if ya have had oral Cancer .

radio/chemo was horrific for me, i lost all sense of taste , it made me totally deaf in one ear,and severe nerve damage to my neck/tongue , its been 7 years now since i had surgery and treatment and there has been no improvement ,the graft which they took from my upper leg for  my tongue shrank and seemed to solidify after the radio/chemo as well.i hope you dont require it doing ,i thought the op was bad i had ,i wasnt prepared at all for what was coming 

Thank you all for your useful information to my questions. I've got a list of questions to ask already for Tuesday. 

How long has it taken for people to eat normally I know there will be foods that r hard to get rid off and looking at everyone's comments salads seems to be one of them

Thank you all for your useful information to my questions. I've got a list of questions to ask already for Tuesday. 

How long has it taken for people to eat normally I know there will be foods that r hard to get rid off and looking at everyone's comments salads seems to be one of them

Hello there

sorry for your diagnosis. I had T3N0 oral tongue cancer. surgery 3 years ago in June (partial glossectomy and free flap reconstruction, neck dissection) and radiation that ended in the August. Radiation is very painful but I managed to keep a liquid diet by mouth. Started eating soft food a couple of weeks after it finished. Slow improvement over next couple of months - eating out by November. Recovery works have been a couple of months quicker if I hadn't needed radiation, I would say eating is now 95% normal for me. I can eat whatever I like but some things are a bit trickier as I have less tongue mobility (from surgery not radiation. Speaking is also about 95% - I spit a bit more than before and mild lisp on some words. But I've done public speaking no issues.

best wishes for your treatment. 

Thank you all for your life stories and useful information this is really helping me knowing there is light at the end of the tunnel even if we have to adapt to new ways of eating and speaking

HI I'm 3,5 years post radiotherapy for tonsil cancer with several affected lymph nodes.my blog www.RadioactiveRaz.wordpress.com might help tips and links  to other sites. I had a huge ulcer full,length of tongue for  at least 10 weeks I had 35 radiotherapy and 2x10:hour chemo sessions. It's not easy but am now happliy living my life. I had a n g tube 8n for 6 weeks I survived in ensures when it was taken out at least 6 a day which allowed me to try ti swallow and eat. Eggs will become your best friend for a wh8ke. Now I can't eat salads or anything)ng spicy small,price to pay Hazel