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I'm a new one - any hope for lisp and nerve damage improvement after oral tongue cancer?

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Dear all

I was diagnosed with tip on tongue cancer, underneath and on the left hand side and had surgery on the 14th November. My surgeon took out a big chunk but found that the biopsy had got all of it and lots of healthy tissue was removed, however he wanted to be safe than sorry. I have not had a neck dissection as the tumour was so small (3mm by 4mm) he said it was protocol not to do the invasive neck surgery for such a small tumour.

I am really very grateful that it’s been caught early but I feel like the whole cancer thing has just hit me like a truck and it’s sinking in now, I’m having awful nightmares. It’s now just a month after surgery and I have a lisp that upsets me as I’m a Counsellor/Psychotherapist who was attending interviews for jobs up until this happened. I get so scared when I speak to strangers and can’t ever imagine being given a job speaking like this, especially as the jobs I’m qualified for involves advocacy, public speaking and campaigning.

I’m being referred to a speech therapist and a clinical psychologist by my amazing Macmillan nurse (a UK special cancer support nurse) so I really hope they can both help.

I really don’t want to fall into the victim trap when I’ve been so lucky and others aren’t but I feel so awful. Can anyone give me any hope for my lisp to improve due to a shorter tongue and less of a tongue down the left hand side, and also if any feeling will come back in my tongue? – the doc won’t say either way if the nerves will regenerate or my speech will ever be the same, humph!

Thank you, Kate

AJW1966
Posts: 69
Joined: Nov 2012

Sorry your going through this, but I have no experience on your issue. The best place to begin is the speech therapist that was recommended to you. They are the ones most qualified and hopefully you'll have exercises to help improve your speech.
Time will tell, like the rest of us who have nerve damage from one degree to the other.
We all heal a little differently.
All the best, God bless

Alan

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Thanks for your kind words :-)

phrannie51's picture
phrannie51
Posts: 3851
Joined: Mar 2012

to give yourself a chance to heal...

I don't know if your lisp will ever go completely away, or if your tongue will ever get all of it's feeling back...but I'm sure things will improve over time. That's the one thing about HNC, is every bit of healing takes time. The brain is an amazing thing, and seems to make up for the things that seem lacking. Like your lisp will probably continue to improve as your brain starts to compensate. Nerves take a long time to heal..my Onc said only 22 mm a year...I was asking because I have neuropathy in my hands and feet from chemo...it's especially dibilitating in my hands.

The therapist will help immensely, I think...

p

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Thank you, you have given me some hope. I know deep down that it is perhaps a little too early to panic. I'm looking forward to the therapy, I've heard they are good.
Thanks again.
Kate

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Welcome to our little piece of the internet Kate.
Sorry you feel that way about your speech but it
should improve with time. Time is a great healer
also talk to the man upstairs, he listens, seek him
and ask, he works miracles.
Where in England are you from ?, I'm an ex-pat
from Manchester living in Florida for the last 24 years.

Dx wiith tonsil C stage II, HPV +
33 Rad treatments , clear scans since finishing back in April
Pretty much back to my normal self, Working, vacations,
drinking witth the lads.

Anyway Kate, things WILL get BETTER.....have FAITH.

God bless
Tonsil dad,

Dan.

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Hi Dan, thanks for that me dear!
I’m from Derby but it’s funny you should say that. I went up to the North West last weekend and it was the first time I went out after my surgery. I have family and friends up there and spent one day in Liverpool, then Chester and a Friday night out in Manchester then on to Smithy Bridge. I love it up there and have been looking for jobs in that area to (no such luck as yet)
I popped into Liverpool Cathedral actually and said a little prayer, I was quite pissed off with him upstairs but I don’t think he minded me having a moan at him, I asked him to help me out at the same time haha. Have you been to the Anglican Cathedral in Liverpool? – it really is wonderful!
I’m quite envious of you living in lovely Florida, however I’ll be glad if I ever get to Manchester, the home of the best music ever - The Smiths, my fave band.

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

Hi Englishgirl,

my story is similar to yours and I'm a little further down the road. I had surgery in March this year (my tumor was 13mm) and after that I had some radiation in May/June (which involved more tongue surgery to insert brachytherapy implants and certainly didn't help my speech). At this point I can talk pretty much as well as before surgery. More often than not I'm the only one who notices that some letters or letter combinations don't come out as clearly as they should. The first few weeks after surgery were the ones in which progress was the fastest... and then I hit a wall (this is probably were you are now, and the reason why you feel discouraged). After that, progress was measured in months, not in weeks, but you'll keep improving. I am _still_ improving. The tip of my tongue is still numb, but I do feel that the nerves are re-growing. Maybe in another year my tongue will be like new.

I can certainly relate with the stress of talking to strangers, public speaking and interviewing for jobs. It's like having a green face, or a huge stain of coffee on your white shirt. Whatever. I think that cancer made us wiser and more aware of what's really important. Make those qualities shine over your lisp and you'll do great, Kate.

Dre. :)

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Nice to meet you Dre
I’ll be watching you closely as you’re 8 months on. You have given me some hope so thank you so much. My Dr said that because I’ve had my voice in my head since birth it means that it will sound so much worse to me than others. I guess there is still a little swelling at the front left hand side to go down yet. Its S’s and Th’s that are rubbish right now so fingers crossed the speech therapist can help. You’re right my speech has just stopped improving, its very frustrating.
Does your tongue although still numb feel better than at the one month mark? Also have you found that speech is worse when you wake up in the morning? My speech gets so much better at night and when I’m crying – so very strange!
Also is your tongue a bit shorter now and if so does it get stronger, and do you get used to I a bit? Sorry questions questions haha :-)
Kate

ooo's picture
ooo
Posts: 107
Joined: Mar 2012

> Its S’s and Th’s that are rubbish right now

Yeah, it takes a while for those. You'll nail them by the end of the Winter at the latest ;)

> Does your tongue although still numb feel better than at the one month mark?

Yes, much better.

> Also have you found that speech is worse when you wake up in the morning?

Yes. Or if I don't talk for a while.

> Also is your tongue a bit shorter now

Yes. But believe it or not I can extend my tongue much more now than a few weeks after surgery. Still not like an anteater, but it can get pretty far. My favorite exercise is to lick the yogurt off the cup covers with dignity. Couldn't really do it without ending up with a white nose or chin at first.

As time goes by, the tongue gets less stiff, more loose, more full, stronger and more sensitive. I also spend less time thinking about it. Just give it a few more months.

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Oh my, that is the best thing I have heard since I had this damn bloody cancer confirmed. Even my Dr hasn’t explained it as well as you just have. He kind of tried to but just not as well, when he first saw me he said it won’t be cancer so he is very careful with what he says now.
I’m going to copy and paste that and read it whenever I feel either angry, anxious or even when I’m having one of my little cries. Dr did say that the tongue can be tight at first and will ease up, and then I read that it can become more flexible in time but I didn’t believe it. However now you have said it as well it feels possible and I have hope. Perhaps I will French kiss again one day after all, yay :-)
Thank you so so so so so much, you’re a bloody star you are (You have to imagine that said in a British accent to appreciate that last bit haha)!!

longtermsurvivor's picture
longtermsurvivor
Posts: 1836
Joined: Mar 2010

through three separate treatments. First, I was radiated for BOT cancer. Then I had radical surgery for floor of mouth cancer. In that surgery I lost the nerve supply to the left half of my tongue, and had scarring from a large graft done to repair the area removed right next to the tongue. Then, I had radiation again for cancer of the soft palate. So my poor tongue has really gotten clobbered. Additionally I can only open my mouth about 2cm, from radiation induced fibrosis.

Having said all that, my last treatment was over almost 10 months ago. To me, my voice sounds quite altered. But according to my wife, not so much. And I am able to be understood quite well on the phone, so long as I speak slowly and concentrate on enunciation. Your situation will improve dramatically. Time and effort will pay you dividends.

Pat

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Thank you Pat, hearing what people come through and the progression they make after all of it is really heart warming and encouraging ;-)

CivilMatt's picture
CivilMatt
Posts: 3088
Joined: May 2012

Kate,

As you have read here, there is a lot of hope for you to speak correctly again and to have feeling in your tongue. I had surgery and rads on my tongue and all it gave me was a “frog man’ voice, who I am happy to say is retired now (99% of the time). Don’t be discouraged and keep on working at speaking better, you will get there.

Best,

Matt

Englishgirl32's picture
Englishgirl32
Posts: 8
Joined: Dec 2012

Thank you Matt. Glad you have done so well, fills me with hope. I need a little patience I guess and i'll get there, fingers crossed.

Kate :-)

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