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#85577 12-07-2008 06:08 PM
Joined: Oct 2008
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Thank you all who have contributed to help me and others on this forum. I need your help again.

I have my second appointment with the ENT at MCV 12/18 (first was 10/23). I was able to finally get through to HIM on the phone last Thursday. He said he "had staged� my cancer (SCC-Floor of Mouth) during my first appointment, using physical exam only (looking into oral cavity, palpating neck nodes, no endoscope), as T1N0. I told him that my chest x-ray was clear and he said M0.

I asked him about scans and he said he would only do a scan if I select the surgery option (I was given two option, do nothing and wait, or surgery). Directly prior to the surgery, he said he would do a CT. He explained that the surgery he was talking about (I don�t know what you call this particular procedure) was a removal of tissue around the original excised 2mm tumor site (a minimal 2cm diameter of tissue removed) to determine if the margins are clear. I forgot to ask how they close the surgery site. Graft?

When I �pressed� him about having some sort of scan before my 12/18 appointment, he said he did not think it was necessary (I really almost �begged� him to order a scan, if for nothing else, for my own �peace of mind�). He said, �OK, we can do a CT scan, I don�t think we�ll learn anything, and I�ve been doing this a lot longer than you have.� I accepted this with grace, because I got what I wanted!

I am going to get a second opinion and I am starting to work on that NOW! I have I gotten information about Duke, thanks to the kind folks on this forum. I am actually closer to Johns Hopkins, which is ranked higher. Could those of you with experience at JH give me any advice or recommendations? I�m pretty sure I need to see an ENT, any recommendations? PMs are welcome!

I hope I can schedule an appointment for the second opinion soon, but because of the holidays, I doubt I�ll be able to get one until January.

Thank you kindly!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
Joined: Jun 2007
Posts: 5,260
Patient Advocate (old timer, 2000 posts)
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Posts: 5,260
I was seen at 4 hospitals within four months and pushed them all for their plans for this stuff. 2 days after being seen at the Ohio State James Comp. Cancer Center I was on the table and they were doing their thing, I had many scans of all types and am glad I got them. MRI'S CtScans, Pet Scans . Good luck and I hope you get the surgery you need.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: Oct 2008
Posts: 251
RPCV Offline OP
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Thanks, Jim. And my thoughts are with you. I hope everything goes smoothly with the aneurysm appointment today! Let us know what the doc says.


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"
Joined: Aug 2008
Posts: 531
"Above & Beyond" Member (500+ posts)
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Joined: Aug 2008
Posts: 531
Are you back yet? Inquiry friends need to know you are ok....


Dianne..treatment at cc at Victoria Hospital, London, Ontario...insulin dependant, Surgery Sept 8/08 Tracheotomy,composite resection and bilateral neck dissection, left radial forearm free flap... T2N0 squamous cell carcinoma. No radiation A little over 2 yrs clear YAY
Joined: May 2006
Posts: 720
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"Above & Beyond" Member (500+ posts)
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Catherine --

I sent you a PM.


Leslie

April 2006: Husband dx by dentist with leukoplakia on tongue. Oral surgeon's biopsy 4/28/06: Moderate dysplasia; pathology report warned of possible "skip effect." ENT's excisional biopsy (got it all) 5/31/06: SCC in situ/small bit superficially invasive. Early detection saves lives.
Joined: Oct 2008
Posts: 251
RPCV Offline OP
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Posts: 251
Leslie,

Thanks for the info regarding ENTs at Johns Hopkins.

You have always been so informative and helpful in your posts and PMs. And... you also provide the needed links!

I am glad to hear that Fritz is doing well, and wish you both continued success!


Catherine

2mm tumor excised 09/23/2008 (floor of mouth)
SCC (superficially invasive, well-differentiated)
Stage 1, T1N0M0
01/2009 and 01/2010 - PET/CT clear
Four and 1/2 years - NED!
"Detection can be easy, treatment is not!"

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