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"OCF Down Under"
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"OCF Down Under"
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Hi Everyone!
Hope you are all doing better than expected!
I had a tongue flap (after having cancer removed from my tongue) in 2007.
My speech is fine, and I am a professional singer.
Despite being told be all medical professionals I would not talk properly again, let alone sing, if people didnt know I'd had cancer, they sure wouldnt know by my speech, and I am still singing(!) LOVE proving the Drs wrong!
However, even though it has been a long time since surgery, my tongue is still fairly annoying and tight as is my neck. I'm just wondering if any of you have had physio for the tightness in your neck and tongue after having a tongue flap.

I have been told by a speech therapist that physio might help...before I outlay another few hundred bucks, Im wondering if any of you guys have done this?

Secoondly, does anyone from Melbourne, Australia, know of any GOOD Oral Physiotherapists in my city?
Thanks...and I send my best wishes out to you ALL
Cheers Lyn


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
Joined: Dec 2010
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Lyn,
Not even remotely close to Melbourne so can't help you there. I am a school music teacher, voice was my applied instrument, piano secondary, in my college years. When I got tongue cancer, and heard about all the horendous things that were going to happen to my tongue, radiation to my neck, I asked about singing, because, while I'm not a professional singer like you, I was professionally trained, and sing on a daily basis in school, teach singing, and sing in public! My doctors and other professionals said variously, "oh, well," "it will make a difference", "when you are talking about singing like you are it will be difficult because of the blood vessel damage of radiation", and my medical oncologist said: "you'll be ok--I have had radio/television announcers who depend on their voices for a living and they are back at it."

I found out that I can indeed sing the same as before, although I need to work at it more slowly here at home before I get back to school. (better do that this week and next) I think it is because singing is more dependent upon breathing than anything else. I think I ennuciate better when singing than I do when I talk. I practice lip trills which help me with rolling my tongue, but I "only" lost 1/4 of it and have no flap, so don't know what kind of difference that makes.

Now as to help for tightness. I got into lymphedema therapy less than 3 months post treatment, not that I had such bad lymphedema but I was told I could use it and it would help circulation and in theory prevent fibrosis. One of the exercises they gave me was inside my mouth, massaging my tongue. I think it has helped a lot. For it to be beneficial, I was told, you have to do all the lymphatic massage to your head and neck first, instead of just doing the massage to your tongue. But, I have done the massage by itself at times, how could it hurt? I always notice that I have more saliva after I do this massage.

I am seeing a physio (physical therapist to me) next week about other fibrosis issues in my neck. So we'll see. I just decided I was going to do everything I could to help myself be the best I could be, considering everything that has been done to me, which I realize is no more than what others on this site have endured.

If you cannot find anyone to help you with this in Melbourne let me know. You can "PM" me and I'll try to point you to some helpful information.

Keep on singing!
Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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"OCF Canuck"
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"OCF Canuck"
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Joined: Dec 2010
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Hi there I too am doing physio and lymphatic massage - and acupuncture - for the neck tightness the physio and acupuncture really do help! It's like any kind of exercise the more you stretch it etc... The looser it will become - I am 11 weeks out if rads. I actually typed up the physio somewhere on this forum that I was given - it is what my therapist gave me - you should be able to find it here somewhere. Try doing it at home 3 or 4 times a day!


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Joined: Dec 2007
Posts: 46
"OCF Down Under"
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"OCF Down Under"
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Joined: Dec 2007
Posts: 46
Thanks guys, that sounds like the go. I will go in search of a physio who does that close to home, Im sure there would be a few. smile Stay well!
Lyn


Tongue Cancer SCC Removal of 2/3 of right side tongue, neck disection-34 lymph nodes removed. flap for new tongue made from left wrist in 2007. Now (mid 2011) speech has been back to normal since early 2009, and Im back working as a singer. So far so good!
2016... Still cancer free! Yay.
Joined: May 2009
Posts: 1,412
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Joined: May 2009
Posts: 1,412
OMG! I am a special ed teacher and I was told some of the same things. i did not have to have a tongue flap. but was told my speech would be greatly affected. I do notice slight lisp, but my newer students do not notice anything about my speech, because they did not know what it was like before. I also notice there are some words I have to be slow and calculated at saying, but I can tell you I am still teaching to this day. it is nice when we are still doing things that the Drs say we might not be able to continue doing. My ENT even told he was afraid I would ne be able to talk well enough to teach and can not believe I am talking so well. I have to work at it. If I get lazy then many of my words do not come out clearly.

Last edited by walknlite; 08-02-2011 12:37 AM. Reason: typo

Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
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"OCF Canuck"
Patient Advocate (old timer, 2000 posts)
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"OCF Canuck"
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My dr told me that in would speak normal after ts all was over however when tired I would have a slight lisp... So far I am still waiting for the normal so we'll see... But its amazing the difference between doctors.


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan

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