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#121837 09-16-2010 02:40 PM
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I am a 53 year old female who went to dr.s for over a year complaining of tongue pain...all (6) physicians I went to said it was Lichen Plantis and gave me creams ...Then when I couldn't swallow I went to ENT and they said I have a tumor on my tongue - It was tough to decide what treatment to persue, but I went with surgery as they say it was the better option as the cancer I have does not always do well with radiation. I had the surgery on September 3 ...Wonder if I made the right decision ...I had to have a "free flap" surgery where part of my forearm was put in to cover loss of tongue - I am now home ...with a trach, suction machine and feeding from Peg tube. I really want to hear from someone with their experience ...How they made out ...Will I ever speak ok, eat ...etc


54 Year Old Female Non Smoker - Non Drinker
Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG
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my mother had lichen planus that also developed into cancer.
in her first surgery they removed a part of her tongue as well as lymph nodes - she was able to talk again but never regained her normal voice. she also had a trach and suciton machine. the suction machine we only had to use for a couple of weeks after surgery. i think the trach stayed in for at least 3 or 4 months. i wouldnt rush to take that out - in case something happens and you have to go back to the hospital, its good to have that in (not to scare you, just being honest)


my mom, age 59.

12/08 surgery & 33x rad
4/09 recurrence
5/09 surgery & 35x rad
12/09 recurrence
1/10 surgery. peg tube, trach, fibula free flap
6/10 recurrence. double chemo treatments.
8/10/10 finally at peace in heaven
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Hi and welcome to OCF.
I am glad you found us as this is the best place to get answers to your questions. If you look at my signature (when you feel like it add one of your own) you will see mine was also diagnosed as Verrucous Carcinoma. I had the same surgery as you and it took a few months but both your ability to eat and speak will get better with time. I had one surgeon tell me this kind of cancer is "low grade" which annoyed me no end but I have read here some time ago that this is in fact true. Mine was floor of the mouth and adjacent to tongue and I believe I lost about 1/3 of my tongue but it looks like less to me.
The 3rd of September was not too long ago and you need to give yourself time to heal. I presume you also had a large patch of skin taken from you thight to cover the area taken from your forearm. There are many of us here that have had the same treatment as you. It will take a little time and maybe some speech therapy but you will get there. More important is that you are and stay cancer free!
I will put you in my watched user list so I know when you post again and try to answer any questions you may have.
I actually have a question for you and that is were you told why you had the Peg tube. I had the NG tube while in hospital but it was removed at around day 8 and I could then sip liquids and have food that was really mushy.
By the way I was a couple of years older when I had my surgery.
Love
Gabriele


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

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Thank you so much for answering so fast - Ineed a sounding board or someone who has gone thru tis!! -- When I left the hospital I still have a trach because of immedint swelling. I have a apt with the surgeon Tues the 21st. Also they did a swallow test before I left and could not swallow. My tongue was taken from my forearm, it is still so large in my mouth and I can swallow some spit and even a little sip of water but with difficulty. So it is to keep my nutrition up. I can't wait o be able to at least swallow -- they want me to have a swallow test before the attempt! -- Did you have a free flap? - How long before eating? - I still talk thru trach but I can talk some but with swelled tongue it is hard. I wonder if I will be more legible in my speaxch and when - I am not rushing, just want to see into my future?


54 Year Old Female Non Smoker - Non Drinker
Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG
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Welcome to OCF. You have come to the right place. Do not try to rush in the healing area. It may take some time and it may take longer than you want, but you will get there. Come here anytime for support and to vent. This is my home away from home.


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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How do I put my surgery etc info on the bottom of my messages?


54 Year Old Female Non Smoker - Non Drinker
Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG
Joined: Jul 2007
Posts: 939
"Above & Beyond" Member (500+ posts)
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Laureanne,

Go to the top of the page...."MY Stuff"..."Profile"...bottom of that page is a box that says "Signature". You can enter all your information.

Wishing you a speedy recovery from this surgery.

Deb


Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!

Passed away 1/7/17 RIP Bill
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Laureanne,
Click on the My stuff tab, go to Profile and scroll down to signature at the bottom. Add your information here and it will come up every time you post. Have a look at the ones above as examples.
With a signature it gives us all a better idea how to respond.


History Leukoplakia bx 8/2006 SCC floor mouth T3N0M0- Verrucous Carcinoma.
14 hour 0p SCC-Right ND/excision/marginal mandibulectomy 9/2006, 4 teeth removed, flap from wrist, trach-ng 6 days- no chemo/rad.
6 ops and debulking (flap/tongue join) + bx's 2006-2012.
bx Jan 2012 Hyperkeratosis-Epithelial Dysplasia
24cm GIST tumour removed 8/2013. Indefinite Oral Chemo.

1/31/16 passed away peacefully surrounded by family

Joined: Jun 2007
Posts: 10,507
Likes: 2
Administrator, Director of Patient Support Services
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Welcome to OCF Laureanne. I did have a trach for about 2 months but it was due to a different oral cancer surgery. You will get lots of help from people who have undergone a similar procedure. Everyone is different and reacts a little bit different. Hope you begin to feel better soon.


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
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My free flap is the whole top of my tongue - Had the surgery September 3 - Home on the 11th --came home with a trach, suction machine, peg tube in stomach, peg tube feeder, nebulizer ---
Tongue is still very swelled - feels so foriegn - Speach person brought cold lemon swabs ....I could not feel or taste anything on the top of my tongue ....some to the sides ....
Has anyone who had this surgery ...Do you get anything back?
Also want to wait for a bareum swallow before letting me try food - I can't get liquids over the big tongue, when I curl it a little I can get it back to swallow. Others with experience ---will I ever be able to eat liquids/solids ....how long did it take you? How long before you had trach & Peg tube removed......How long before the forearm heals and looks like skin and not raw meat? Really would love to hear from you


54 Year Old Female Non Smoker - Non Drinker
Stage 3 Squamous Carcenoma middle tongue, Surgery 9/3/2010 15 hour operation, Neck distention,right - 19 lymph node removed/ok -some tongue dysplasia - free flap/forearm, left arm, skin graph-thigh, lip split/jaw 1 tooth removed/PEG
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