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 .

Hi Nicola

Can I say Im sorry you have had to find yourself here,but it is the safest and most friendly place to get support and learn about cancer.

As you are at early days of tests etc you will have lots of questions filling your mind. There are different ways of staging a cancer one of which is the size of the tumour for example a small tumour with no nodes stage1.

The information youve been given before scans etc has been alot for you to absorb as it is.

Some surgeons prefer to remove lymph nodes for testing in lab as a belt and brace approach it doea not mean 100% that there is spread to nodes.

I noticed my tumour 6mth before diagnosis after biopsy. Also I only found out I was to have a neck dissection the night before my surgery.

As you have said you have been reading alot google search I assume. That will just scare you sensless at a time you need to be strong for your wee girl and yourself.

Take one day at a time and give yourself time to relax and be calm. Make notes of questions you need answers to from drs as you will find yourself going blank at appointents. If you can take someone with you who can ask on your behalf just in case.

Not everyone has very radical surgery so stop reading worse senarios get through your tests and be fully informed of what is intended for you.

I truley hope you will be able to look back on this and say "well I got through it" as alot of us on here have.

Sending you hugs and my best wishes xx

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