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#112328 02-12-2010 06:48 PM
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mchlprh Offline OP
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For the past 1+ years I have had progressively worse symptoms. Started as on and off left sided sore throat and ear pain. I was referred to an ENT who 1sr diagnosed post nasal drip and then relfux causing the throat irritation. Ive taken a ton of different nasal sprays and allergy meds...allergy testing was negative as well as negative ear tests and a FEES (swallow . reflux) test was negative for reflux but the ENT felt I still had the reflux but it was silent??!!. Took Aciphex for almost 1 year in total. Ear, throat back of tongue irritation / feeling persisted. Finally in Dec 2009 after almost 1 year ENT said I should see a gastro??...went to the gastro had an upper endoscopy...negative for reflux. Throat irriation has gotten progressively worse over the last year....now I have pretty bad left sided ear, throat and tongue pain. Visually I do not see any oral lesions other than some swelling on the floor of my mouth on the left under the tongue. I also feel like I have some submandibular gland swelling. I am scheduled for a CAT scan next week. Can this be oral cancer that has been missed / misdiagnosed for over a year? I have had tons of direct and indirect laryngoscopies and an x-ray of the soft tissue of the neck which was negative. Im really frightened....everything I read says OC needs to be diagnosed quickly yet I feel like I am / have gotten the runaround for over a year??


Michele
Long Island
Still Testing
mchlprh #112332 02-12-2010 09:37 PM
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Michele,

The CT scan should help. There is also a thing called a PET scan that you can ask about.

I think you might want to look for another ENT you can get a second opinion from. I was diagnosed on my third doctor. I was not miss-diagnosed, the GP and an Oral surgeon just could not identify what it was I had. They both thought about anti biotics or anti virals but I insisted that if they did not know what it was I wanted to see another doctor that could figure it out.

Both of these doctors ruled out cancer. Even though I was relived that I did not have cancer I still wanted a definite answer. The ENT I saw figured it out, it was cancer.

On the Bright side, we see many come here asking the same questions you are who end up being cancer free. You just want to make sure you know where this problem is originating.

Good Luck.

Kelly


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
Kelly211 #112340 02-13-2010 06:24 AM
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not trying to scare u but misdiagnosis is the reason why this kind of cancer is usually not found until its in the later stages.
with that said, the cancer normally isnt painful. andy had hearing loss, not pain, and was misdiagnosed for over a year. finally, lumps in his neck were biopsied, and he was diagnosed.
but as kelly said, many come on here thinking the worst, and they are cancer free.
if u are still uneasy...definately get a second opinion.


Teresa
-----------
CG to ANDY. Nasopharyngeal Carcinoma (NPC)
T2N2cMxG4 stage 4. 43 @ dx 8/31/09
tx 9/21/09-11/06/09 cispatin/docetaxel/5-FU X3
PORT 9/9/09, PEG 12/07/09
35 IMRT-1/wk carbo 11/30/09-2/3/10
tx stopped due to complications
IMRT BOOST 3/08-3/12/10
PET 4/12/10 CLEAR!
PEG out 4/14/10
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mchlprh Offline OP
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Thank you Teresa and Kelly!

I will definitely post an update as I know more. I agree that I think I need a new ENT. As soon as the scan is completed and I can access the films and report I am going to go elsewhere. Cancer or not after 1 year of treatment for things I did NOT have I beleive I need a new direction / set of eyes. Sloan Kettering is only about 25 miles away but in Long Island / NYC travel time its really about an hour and a half trip by car or rail due to horrible traffic / congestion but at least I have a top Cancer Center close.


Michele
Long Island
Still Testing
mchlprh #112359 02-13-2010 11:12 AM
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I knew I had something about ths time in 2006 but it took until the 1st part of 2007 before someone took me serious. Even a lot of Drs didn't know that much about it.


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
EzJim #112381 02-13-2010 07:13 PM
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Hi Michele, I know traveling around the city is difficult and can be an issue if you are not feeling well. BUT we are very lucky to be so near to Sloan.
They do have some centers outside of NYC. I know there are some on LI . Not sure of location or speciality but it might be worth looking up. I think their surgeries are all still done in the city but evaluations, follow-up care.etc are done at some of their sites off the main campus.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
SusanW #112384 02-13-2010 07:36 PM
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I'd also heard it's best to get it quick, but my surgeon said it was likely a full year between it first showing and when he finally got it out...and he got it all, so don't think that if it turns out to be cancer it's too late.


stage 2 scc in left oral tongue. 32 at dx
removed 21/12/09 plus left neck dissection and upper arm flap.
clear pathology 24/12/09
non-smoker
active footballer/surfer
social drinker
lives stress-free!
jonp #112427 02-14-2010 09:19 AM
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Michele,

It sounds like you have been doing everything the ENT told you to do. The important thing is you have not been ignoring the pain. A lot of us here have dealt with what you are going through. I started looking into an "ulcer" I had on my tongue and after a year it was suggested that I get a biopsy and that is when I was diagnosed.

Have you already made an appointment at Sloan?


Suzanne
***********
T1 SCC on right side of tongue
Age 31...27 when diagnosed
4 partial glossectomies
No chemo or radiation
Biopsy on 2/2/10-Clear
Surgery needed again...no later than April 2011
Loving life and just became a mother on 11/25/10
It's not what we CAN'T do..it's what we CAN do:)
suzanne98 #112442 02-14-2010 04:13 PM
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mchlprh Offline OP
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No appoinment yet. Tomorrow I go for the CT and my Dental visit. Hopefully by 2/16-2/17 I will know the CT results and then schedule w/ Sloan regardless of the ENT's finding.


Michele
Long Island
Still Testing
mchlprh #112455 02-14-2010 07:06 PM
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Hi Michele, we have an appt at Sloan on the 23. I'll let you know how it goes. I'm sure you have heard some of the same great stuff we have.


CG to Spouse BOT, Chemo and radiation started on March 29,2010
Ended on May 14,2010. LET THE HEALING BEGIN!!!
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