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Joined: Sep 2009
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Joined: Sep 2009
Posts: 618
Nocam,

I met at Sloan with Dr. Jatin Shah who is the head surgeon and is world renowned. I just called the number listed for him on their site and asked for a consultation with him and got it. He may be able to do surgery without doing as much damage as your doctors down south are looking at.


Kelly
Male
48, SCC (Soft Palet) Rt.,
Stage 1, T3n0m0,
Dx, 8-09, Start IMRT 35 9-2-09 end 10-21-09
04-20-10 NED
8-11 recurrence, node rt. neck N2b
10-11 33 IMRT w/chemo wkly
3-12-12 PET - residual cancer
4-12 5 treatments with Cyberknife & Erbitux
6-19-12 Pet scan CLEAR
12-3-12 PET - CLEAR
Joined: Jul 2012
Posts: 61
nocam Offline OP
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Posts: 61
ChristineB

Thanks for helping me to understand that all my thoughts are not completely obsurd. I was told this protocal thing by 2 differant doctors at the same institution. The first time I ask the doctor if protocal wqas the same then why did Michael Douglas go to Sloan when there are surely good folks in California.If I am told this again I am going to give the person that says it the link you gave me.

Tomvonk

I am trying to speed things up for the pain is a reminder. I wish everyone wanted to go as fast as I am ready for.

Kelly

As always, thanks a lot. You have further confirmed my feelings about Sloan. I just hope they will take me. If they don't I don't know where to go. I know where I do not want to go for I have already been there and did not like the folks or the plans.



2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Jul 2012
Posts: 61
nocam Offline OP
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OK, I am going to try to explain a little about what I think I understand regarding "Positive Closure" and include a little diagram I have drawn if I can upload it. Where are the people who must have had this procedure? Charm posted some info about this procedure but I can,t find it.

When I went to Emory Univ. They wanted to remove my tongue and voice box. As I later understood there was nothing wrong with the voice box but by removing both they could eliminate the problems I might have with aspiration. I am still looking forward to hearing about those here who have flaps and what problems they have with aspiration. Based upon Emorys plan I went to Sloan Kettering and Univ. of Pitt to look at options.

At Sloan there was no mention of removing my tongue or voice box and they said the voice box was fine. What they suggested was this "positive closure" approach with flap as a backup if needed. The Doctor drew me a little diagram. What they would do is cut out the tumor. They would then stretch and rotate the tongue to fill the cutout. The tongue would be shorter and speach problems would have to be overcome but there was no mention of aspiration problems. This procedure just sounds better to me.

If anyone can add more here that would be GREAT.

PS: Is there a way to add/upload a jpeg to a post? If there is I cannot find it.

Last edited by nocam; 01-30-2013 12:34 PM.

2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
Joined: Apr 2003
Posts: 122
Senior Member (100+ posts)
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Senior Member (100+ posts)

Joined: Apr 2003
Posts: 122
There really is a great difference in different treatment centers. I started treatment at the (free) Grady system here in Atlanta, but after INTOLERABLE delays and indifferent doctors, I quickly switched to (still free w/Medicare) Emory University, where I watched them build the Winship Cancer Center-an incredible place. Many related services in one bldg really helps me and the staff is knowledgeable and extremely helpful. Cutting edge research helps, too.


SCC right tonsil Dx 14 Feb 03
No surg till Apr 03
Lip resection Sep 05 "frankenface"
Recurr Apr 10
2/3 tongue removed Jun 10
SPEECH/SWALLOW/DROOL challenges FUN!
Dec 10 Tumor @ nodes/larynx/cart artery growing
Erbitux Mar 11 Hyoid bone regrows!?
recur Dec 12
begin taxo chemo
10yrs-still kickin!

Joined: Jul 2012
Posts: 61
nocam Offline OP
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Posts: 61

Hello gpk`101

I see you are from Atlanta (like me) and went to Emory Univ. Who did you work with there?

PaulB posted a couple of excellent links which mean a lot to me and I prefer to think they very clearly identify those location that are most capable of providing the best service possible.


http://health.usnews.com/best-hospitals/rankings/ear-nose-and-throat

http://health.usnews.com/best-hospitals/rankings/cancer

A couple of observations:

ENT
#4-UPMC
#39-Sloan Kettering
Emory Univ. Not listed in the top 50

CANCER
#2-Sloan Kettering
#28-UPMC
#39-Emory

These list also support my personal belief that protocol is not the same everywhere. Otherwise, seems to me, everyone would generally score #1 in their particular area of concentration. I am new to cancer but if I could start over, or advise someone, I would do/advise differently. I wish I woulod have been directed to Emory Univ., to start with, for a first opinion and I would have then gotten a second opinion elsewhere. I did not know Emory (and who could be better locally) was an option at the time so I went where I was sent. If I would have known and could go back further I would not have done what probably caused me to get this cancer but-tolate now. I am just trying to get it right now but no success so far.

You being from Atlanta means you know some of the locals. Emory you know because you have been there. Piedmont, never seen a TV AD, but they have a good reputation for some things and they do cancer stuff. Northside Hosp. Does TV Ads for cervical and breast cancer but I know a guy, you probably know his name, who lives near there that could go anywhere in the world but they choose Emory. There is some new group, build a new bldg, that recently made Atlanta a base but I can’t remember their name. Its something like ……. Cancer Center. Then you have Dekalb Medical Center in Dekalb County. Who the heck is Dekalb Medical Center. I know who they are but until the TV Ads with 2, 11 and 14 year testimonials I did not know they did cancer (don’t say what kind-maybe all) and why. Are they trying to take business away from Emory Univ.?

TO MANY CHOICES AND IF YOU MAKE THE WRONG CHOICE…………………..SOONER.




2010 sore throat
Jan 2011 ENT no prob
Jun CAT no prob
July PET
July biop pos
July PEG

HPI (1-3) T2N1 squamous cell carcinoma right tongue base treatment chemo/XRT end Oct 2011.
Jan 2012 PET neg
June PET-18mm mass right tongue base pos to 7.2 SUV no nodes pos
July MRI.
July bio pos
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