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#129788 02-18-2011 06:38 AM
Joined: Feb 2011
Posts: 3
stevec Offline OP
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Joined: Feb 2011
Posts: 3
Hi all. I am new to the board. I am a family member of a 40 year old male who is three weeks post op. The patient lost 85% of his tongue in the surgery and the part that remains is the back 15%.

The physicians are saying that he will most likely never speak or eat again. I am looking for links to users who have had similar diagnoses who have succeeded in beating the odds. Any successful stories will go along way to providing my family member at some hope that he will regain some of speech and the ability to eat. Any ideas, potential therapies, or treatments that can be shared would also be greatly appreciated.

Thanks

Joined: Jun 2007
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Hi Steve. It is not necessary to repeat your post. Give it time to be seen. Not every member logs onto OCF daily. Im sure someone will come along who has gone thru something similar as your family member. Look for posts by misskate, I believe she has had a similar experience.

As I wrote yesterday, seek out a speech therapist. They will be able to help your family member with the mobility of their new tongue.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2002
Posts: 4,912
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OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
Steve - the answer to your question is very long, and super variable by individual patient, and extent of surgery. The docs have called this correctly, for as small as it is, that piece of tissue performs so many vital functions that its loss is catastrophic in most people. That is why many people are treated with chemo and radiation first to see if the tumor can be reduced (even eliminated) before any surgery on it is chosen as a treatment modality. If you would like to talk about this I would be pleased to explain the ups and downs of it all . You can call me at the OFC offices.


Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.

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