Partial tongue removal - I am so worried

Hi Lanclassie 

I have a friend who had a partial glissectomy some three years ago and is doing very well. I’ll have a word and see if she can offer you her take on this. Meanwhile you could take a look at YoungTongues who are a peer support group for people in your position https://www.youngtonguesglobal.com/

Hope that helps. 

Oh Dani 

Have looked at young tongue yesterday..

If you could speak with your friend I would be most grateful - just to add not so young 68 now and also in Wales.

You just long to find someone who has gone through this.

Her name is Panch 

She has also recommended you look at the mouth cancer foundation support group on F***b**k

Thank you so much - I am not on face book but have found the site and will try and phone tomorrow..

I really need advice as to whether to get the partial tongue done and if needed then the sentinel biospy if it becomes necessary.  Plus the level of speech I will have, so will try them tomorrow.

Must admit the Oxford NHS online leaflet has been very informative too.

Dani is it appropriate to message Panch if I should I need to.

Many thanks

Hi Lanclassie 

I am F, 52, and had surgery in Jan for a T1N0M0 on my tongue and am happy to try and answer any questions you may have.

My surgeon wanted to do a sentinel node biopsy, but it can only be done before surgery (the cancer has to be present) and as it would have meant a month's wait, he decided against it. He also decided not to do a neck dissection as there was no indication from any of the scans to suggest spread to the lymph nodes.

I am not entirely sure what % of my tongue was removed but i think he said before hand it was about 25% (the tumour was in an accessible place on the side of the tongue). I didn't need any flap reconstruction.

I was worried beforehand about speech loss as I am a teacher, so obviously being able to talk clearly and loudly is vital for me!

Mine was a quick operation (about an hour) and was done in day surgery and I was let out that night. I had virtually no pain (which was strange!!) as my tongue was extremely numb. No stitches were used so the site did look quite gruesome. In recovery they made sure I could sip water and eat a yoghurt before they let me home.

I actually continued to have no tongue pain really at all, although i did have pain in my jaw and ear for about a week.

Food - I was on a liquid/blended diet for 2 weeks (including blending things like chilli) before i started on soft things like scrambled egg, and bread dunked in my soup. Definitely invest in a blender if you don't yet have one (I am so glad I bought one!). It took 4 weeks before I would say I was back to normal eating, although I am still wary now about eating on that side without taking care.

Speech - the speech therapist phoned me the day after my op! I guess that was [probably to assess what I sounded like. She was really helpful in advising about tongue exercises, food etc and I had 4 appts with her I think over the next 5 weeks or so. She emphasized tongue stretching exercises were the most important thing to do.

Initially I was signed off work for 2 weeks but on the advice of the speech therapist I extended that to 4 weeks as a) I wasn't eating normally by then, and b) my speech (although greatly improved) wasn't good enough at that stage.

Now I am 12 weeks or so on and my speech is probably 90%+ normal. I have kept it fairly private about what I have had done, and no-one who didn't know has commented at all about my speech (including the children i teach). Those who did know say they do not notice any difference. I do notice a bit of difference, but this is less and less by the week.

6 weeks after surgery I had my follow up appt with the consultant and he gave me the great news that thew histology was clear and the surgery had been successful. No radiation or chemo needed. So now I am going to be monitored via ultrasound scans every 3-4 months -  should have my first one very soon.

My tongue still feels tight, and there is a scar down the side. This tightness is worse when outdoors. However the movement is continuing to improve daily (through doing the exercises).

I still have some internal numbness, and the sensations caused by the nerves healing can be quite uncomfortable.

Tips I would give that have helped me (and in some cases I wish I had known beforehand): 1) record your speech before surgery (eg saying the alphabet), then at regular intervals afterwards so you can hear your progress

2) I wish I had been given the tongue exercises BEFORE surgery, then I could have practised them to gain an idea of what my normal range of movement was.

3) buy a blender

4) use reputable sites to look info up - eg here, young tongues, cancer research,. I had also found that Oxford leaflet before and found it helpful

(not relevant to you but maybe to others) 5) having cancer entitles you to free prescriptions - you fill in a form from your GP and you get a card to show.

Phew - that was long - hope it helps!

Hi Lanclassie

I had 2/3rd of the front of my tongue removed and a neck dissection last June,  they didn't stop to do a biopsy for me it was straight in 9 days after they said I had cancer, all a bit of a dream when I look back at it. My speech is affected but most people actually understand 90% of what I'm saying. Have issues eating some things but I'm adapting.

You can read about everything in my profile.

Dee  

HI Teee7

Thank you for your reply it is so very helpful.

Like you it seems the scan showed nothing to indicate lymph codes yet the option was given and it does seem that it might push back surgery.  My surgeon phoned while I was with him to try and sort both together but didn't manage it and secretary was to try Monday..  My surgery will be in two weeks so I shall push a head with the mouth only.

I will take all your advise on board - blender on the to do list..  What great advice about the voice recording too.  Have found some excercises on the Oxford site so will do daily.

Once again I am so grateful and you have really resolved so many little giggles - it is really appreciated.

DeeDeeDee

Thankyou so very much for this - I am feeling alot less fearful with your imput and your journey which I have read thank you so much for your reply.

Yes I am sure I will adapt -I remember how i overcame the biospy in Jan as it was really painful for a few days - need to get through this for my loved ones and of course myself.

You're stronger than you think you'll be and although a long road you will get there.

Lanclassie said:

I really need advice as to whether to get the partial tongue done and if needed then the sentinel biospy if it becomes necessary. 

The sentinel node biopsy has to be done before the surgery. The cancer is injected with a dye and the surgeon looks at which lymph node the dye appears, removes and biopsies it.