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Joined: May 2013
Posts: 134
Senior Member (100+ posts)
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Joined: May 2013
Posts: 134
My dad was a colon cancer survivor. When I was diagnosed he told me that the first people to leave treatment were those who were angry. They didn't view treatment as something being done to them, but instead something they were doing to cancer. Attack mode. Claws and fangs. My iPhone screen was the scene from Braveheart where William Wallace, bloodied from battle faces a mounted foe and yells at the top of his lungs.

It worked for me


Dx March 2011 via FNA (49 yrs old)
SCC BoT
HPV+ exact strain unknown
Stage IVa T3N2cM0
Cisplatin x 3, IMRT x 40 (7267 cGy)
One node removed post-treatment (rad dmg)
Clean PET 10/28/11
Swallow therapy
Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
Good for you, NS - for taking action and getting the biopsy! Your great attitude will definitely go a long way in getting you through whatever you have to do to beat this cancer beast! My son was only 33 and a non-smoker when he was diagnosed with SCC. It appeared as a small lump under the right side of his tongue. He had put off seeing a doctor until it grew to what I could see as about the size of a quarter. Paul is doing great, now almost 7 years later! You will get through this. You have lots of support, compassion and knowledgeable people here to help you through this. Hang in there!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Sep 2012
Posts: 58
"OCF across the pond"
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"OCF across the pond"
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Posts: 58
Hi! I was diagnosed with a similar thing on my left side tongue 14 months ago. I was 25 y.o. at that time. It looked like a white lesion of 1.5-2 cm but it was sorted out over a year ago. Now I am free from the desease - thanks God!

Expect T1N0M0 which is an early stage (1). It is totally curable and you will make an excellent recovery! Try not to worry and eat your favorable food as your mouth is going to be sore for some time after surgery.


25/09/12 - diagnosis: lateral left side tongue moderate SCC (10-15mm)
15/10/12 - operation: partial glossectomy + neck dissection
17/11/12 - operation: excision of the tongue scar (or extensive biopsy)
26 y.o., non-smoker, social drinker
Joined: Dec 2013
Posts: 78
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Joined: Dec 2013
Posts: 78
Hey,
Thanks for reply. i started with the planned three opinions before actual treatment takes place. Managed three NCI centers to see team of 5 members at each location. Visiting each team with my laptop, iPad and set of questions. Time frame is Dec 4 through Dec 30 to have all three opinions before actually I hit the road to treatment. Saved a lot of time by doing PET/CT once at first NCI center. Remaining two opinion will be easy to discuss since no time waste in repetitive endoscopy and PET/CT scans. I got all DVDs on hand to have an hour conversation wit two other NCI teams.
Will keep you posted..


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Joined: Dec 2013
Posts: 78
Anne,
Thank a bunch for your message full with warmth and confidence. Here are updates in my case,

Hey,
Thanks for reply. i started with the planned three opinions before actual treatment takes place. Managed three NCI centers to see team of 5 members at each location. Visiting each team with my laptop, iPad and set of questions. Time frame is Dec 4 through Dec 30 to have all three opinions before actually I hit the road to treatment. Saved a lot of time by doing PET/CT once at first NCI center. Remaining two opinion will be easy to discuss since no time waste in repetitive endoscopy and PET/CT scans. I got all DVDs on hand to have an hour conversation wit two other NCI teams.
Will keep you posted..



Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Thanks a ton for full of confidence response. Thats all we need here, rest is immaterial....

here are my plans

Hey,
Thanks for reply. i started with the planned three opinions before actual treatment takes place. Managed three NCI centers to see team of 5 members at each location. Visiting each team with my laptop, iPad and set of questions. Time frame is Dec 4 through Dec 30 to have all three opinions before actually I hit the road to treatment. Saved a lot of time by doing PET/CT once at first NCI center. Remaining two opinion will be easy to discuss since no time waste in repetitive endoscopy and PET/CT scans. I got all DVDs on hand to have an hour conversation wit two other NCI teams.
Will keep you posted..


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
David,

Pleasure is all mine. I am on it. Its not a war. It's battle. All we need is confidence with new life style adoption with consistency in food intake, hygiene oral care and my faith. Stay away from alcohol and tobacco. Simple. 100 years are ours.


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
OP Offline
Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Team of doctors was surprised seeing me with open laptop with questions entered and an iPad for further analysis. They made a bold statement about me, they said, "You are our only high tech patient" with all such preparation and right question for every single specialist on a team.
Blown their heads....lol..


Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
Joined: Jan 2013
Posts: 1,291
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Jan 2013
Posts: 1,291
Likes: 1
neversmoke,

You are proactive and that is great. Facing this head first and getting as knowledgeable as you can as fast as you can. It is YOUR life and the final decisions lie with you. So getting as informed as you can is the very best course of action. You are not at the crossroad but when you get there and take a decision, you want to be in a place where you made the best decision at that time. There is never any good from looking back at that point to replay that decision.

It certainly is one more data point and experience to help make future decisions but second guessing is not allowed! Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Dec 2013
Posts: 78
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Dec 2013
Posts: 78
Sir,

Thank you so much for taking time and writing two encouraging lines for me here. I feel boost in my ego after seeing 61 year old is replying to my message. Your response to my post is a priceless moment for me which is beyond all efforts I make to cure this decease.

Bravo and a BIG Thank you....



Special thanks to OCF and all respected members here for their support

Ankur, 37, T1N2M0
12/13: Biopsy and results
01/14: Partial Hemiglossectomy (1/3 tongue) and a Flap Reconstruction
Right neck dissection. 3/42 nodes positive and removed
Speech (80%) and swallow (100%) restored within 5 weeks after surgery(3/1/14)
03/14: 30 IMRT Appointments Started 3/17 (No CT)
04/14: Radiation treatments completed
07/14: PET - All Clear
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