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Joined: Jul 2012
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Hi Emily,
I'm 27 years old dealing with the same issues you are. I was diagnosed with osteosarcoma in my right lower jaw.. I have speech problems also n people always stare. I hate it..I'm so self conscious about it so I know exactly how you feel... What has helped me is my support system...I'm very blessed with friends and family...I know it's hard because it's a major life change especially being so young...but try to be positive and hopefully in the future there's other reconstruction treatment out there...I will be having surgery in two weeks for reconstruction..I am hoping the surgery helps my speech also...
Congrats for beating this evil monster!


Diagnosed 3/2010 on lower rt jaw. 1st surgery on 4/2010, recurrence in 9/2010. 2nd surg. 11/2010 mandibulectamy w trachea and bone and skin graft from Lt. Leg. Placed on remission 4/28/2011
Proud to be a Survivor! smile
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emilyp Offline OP
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Hi Edmar,
Thanks for reaching out, it is always good to hear from other young survivors! I also have a great support system, but I find it hard to talk to friends or family about my problems. I don't want to upset my family so I don't talk about my issues much, and with my friends I just feel like it makes them uncomfortable. That's why I like to come here to vent smile. I count my blessings every day, but I still can't help the self-consciousness.
Good luck with your reconstructive surgery, let us know how it goes! And congrats to you too!


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Sep 2006
Posts: 1,357
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"OCF Canuck"
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My speech was somewhat changed after the 1st surgery, HUGELY changed after the 2nd. A couple of things:

1) Speech pathologist is a MUST - practice, practice, practice. That tongue is a lazy beast
2) There will be some words that you will never master and eventually you will learn to replace them - almost pre-thinking your speech - words like paddle are forever lost to me - they are now boat oars. You learn.
3) What I say to people is "I have had some oral surgeries, but it is important to me that you understand me. Please feel free to ask to me rephrase something...I don't mind at all (emphasis). I have found that this works very well, and people never ask what the oral surgeries were, I think because I am putting the emphasis on them understanding me.
4) I have a prosthesis which is part of my upper denture. It allows what bit of tongue I have to touch the roof of my mouth and make some sounds I could not before. You aren't there yet - but keep this in mind.
5) Yes, your life is forever changed.
6) The best practice for your lazy butt tongue is talking and eating - so enjoy!

Hugs

Donna


Donna,69, SCC L Tongue T2N1MO Stg IV 4/04 w/partial gloss;32 radtx; T2N2M0 Stg IV; R tongue-2nd partial gloss w/graft 10/07; 30 radtx/2 cispl 2/08. 3rd Oral Cancer surgery 1/22 - Stage 1. 2022 surgery eliminated swallowing and bottom left jaw. Now a “Tubie for Life”.no food envy - Thank God! Surviving isn't easy!!!! .Proudly Canadian - YES, UNIVERSAL HEALTH CARE IS WONDERFUL! (Not perfect but definitely WONDERFUL)
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Erik,

You speak great for a guy that's had OC 3x brotha. The only time I really couldn't understand you was when we were watching 21 Jump Street and I was laughing too hard to hear what you were saying!!

Don't b*tch to Korean Jesus, he's got Korean Sh*t to deal with! Sorry couldn't help it. laugh

Eric


Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
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I was 32 and was last diagnosed again at 38 so tha would be 2006 for me. Did you have Erbitux as well? Or just the Chemo with your radiation.


Type and stage of cancer:1st - SCC left base of oral tongue non HPV, T3N1M0 hemi-glossectomy 60 node rem, radX35 carboplatnum &Erbitux X6, Peg tube, lost 55 lbs
2nd - SCC right base oral tongue, surgery, Cisplatin & Erbitux x 16
3rd - SCC right base oral tongue, surgery, hope.
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emilyp Offline OP
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Nope just Cisplatin. It sounds like you have had a pretty rough go at things, I am sorry you have had recurrences. I am only 6 mos out of treatment so I can't count my blessings just yet... just have to pray and hope it doesnt come back.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Emily, depending on how much tongue you've had removed you speech should clear up. I had 1/3 - 1/2 and the muscle of my real tongue - the old side - has slowly strengthened to compensate for the side with the flap. I still have a couple of words that cause me problems and I Still get lispy when I am tired, but for the most part it improves steadily - my husband says he can't tell if there's a problem. I think the surgeon has a lot to do with it as well. Mine did a great job of rebuilding my tongue.:) even my rads dr. Was amazed at my mobility. It acts normal for the most part. Time does heal. Hugs


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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Hi Emily:

I had half of my tongue replaced and a flap from my forearm as well. That was August last year.

I just finished up speech therapy about a month ago. I highly recommend it. I also had to do mouth and tongue stretching exercises. So the sooner you get started the less stiffness you will have.

She reminded me first that there would only be so much a person can accomplish.

She told me to practice, practice and practice. She gave me many exercises and tongue twisters. I did what she said and my speech is still a bit "lispy" but I am so much more articulate now. I practice talking to the cat every morning before I talk to people,lol.

We recorded my voice in the beginning, then I read the same passage again at the end of the therapy and you CAN actually hear a pretty significant difference. There is also tone, pitch and volume to consider for which the therapist can help you.

Since your tongue is a muscle, keeping it stretched and strong helps with speech and eating.

Wishing you the best!



'08 SCC Rt tongue,part glossect.
'09 Rt neck dissect, 3 Cisplatin, 35 rad.
Aug '11 Rt tongue,hemiglosstmy, Lt neck dissect, forearm flap, 8 Erbitux,30 rad, brachy tongue.
Oct '12 SCC prev stoma site. SCC inside trachea.
Nov '12 total larengectomy, addl neck disect, pec flap
Oct '15 Myelodysplastic Syndrome (form of leukemia)

Dec 8, 2015 passed away peacefully at home surrounded by loved ones
How Cindy wants to be remembered..."I want people to realize I am no longer trapped in this body prison, and I will be free and whole. I want to be remembered by all the good and loving times spent together, not in sadness."
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emilyp Offline OP
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I took speech therapy for about 4 months after radiation, but since I have started back at work I have been travelling constantly so I have taken a break from therapy. I seemed to hit a plateau in progression, though.
As far as recontruction goes, has anyone ever heard of a surgery where tissue is added to the tip of the tongue? My aunt, coincidentally, is an Otolaryngologist, and she said she has performed this surgery a few times. She asked my surgeons at MD Anderson why this option was not given to me, but apparently MD Anderson doesn't do that particular surgery. I plan to have her examine me next time I am in town to see if that would be a viable option - I was just curious if anyone else has ever heard of that type of surgery.


Emily - 24 years old at diagnosis
HPV-, no risk factors
T2N2b Squamous Cell Carcinoma
Left oral tongue, poorly differentiated
Hemiglossectamy, reconstruction, partial neck dissection
30 Radiation treatments, weekly chemo (cisplatin)
1/13/12 last day of treatment
Diagnosed October 2011
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