#85577 12-07-2008 06:08 PM | Joined: Oct 2008 Posts: 251 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | 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) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 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 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 Posts: 251 | 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) | "Above & Beyond" Member (500+ posts) 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 Likes: 1 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: May 2006 Posts: 720 Likes: 1 | 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 Gold Member (200+ posts) | OP Gold Member (200+ posts) Joined: Oct 2008 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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