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Joined: May 2012
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He lives in Camden, SC, if someone has a specific CCC recommendation or experience.

Joined: Nov 2006
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
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Hi Norman- in the listing for NCI CCC list that Christine gave you in an earlier post, there is listed the Hollings Cancer Center in Charleston, South Carolina. If you click on the link, it takes you to the hospital where you can look up doctor profiles or any other info. Don't know how far Charleston is from Camden, but maybe someone else will know the area. I would be sure and find out what stage and any other information you can get. Maybe your brother could get a copy of his medical files so he could have it ready when asking for a second or third opinion. Having his tongue removed seems pretty drastic. My son had squamous cell cancer under his tongue and only had 1/6 of his tongue removed and doing fine and cancer free more than 5 years later. Let us know what happens.


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: Dec 2010
Posts: 291
Gold Member (200+ posts)
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Gold Member (200+ posts)

Joined: Dec 2010
Posts: 291
So, you get the idea:
go to a CCC
do not have treatment until you get a second opinion

Also, the one-size-fits all approach to treatment is not the best one. However, you will find protocol by using the link Christine gave you for the NCCN guidelines. When you get on the main page, you have to sign up for access (just user name/email and password) then you're in. At the far left of the first page there is a link to guidelines. Get into that, then you will go to Head and Neck Cancer, then either to oral cavity or oropharyngeal. Why do these two have different links? Because the treatment protocol is different from each other. If his cancer is in the part of the tongue that is in the mouth, it is oral cavity cancer, if way back in the throat, it is oropharyngeal. You'll see that surgery is the protocol for oral cavity cancer, but definite radiation, plus other treatment is often the first choice for the other.

With this tool once you know what he has (ask questions, get the reports) you can see at least in general what needs to be done. They won't tell you everything, as in "surgery to excise the entire tongue" for instance. It may have to be that way, but maybe not. We have members of this forum that have gone through this surgery and can tell you more about that if it comes to this.

It is a lot of work to research these things but it is time well spent. Your brother is lucky to have you helping him.

Anne


SCC tongue 9/2010, excised w/clear margins:8 X 4 mm, 1 mm deep
Neck Met, 10/2010, 1 cm lymph node; 12/21/'10: Neck Diss 30 nodes, 29 clear, micro ECE node, part tongue gloss, no residual scc
IMRT & 6 cisplatin 1/20/11-2/28/11 at MDA
GIST tumor sarcoma, removed 9/2011, no chemo needed
Clear on both counts as of Fall, 2021
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