| Joined: Feb 2010 Posts: 16 Member | OP Member Joined: Feb 2010 Posts: 16 | 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
| | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Jan 2009 Posts: 1,844 | Michele,
Always get a second set of eyes on you. Second opinions are always recommneded when it ocmes to cancer..some go for 3rds, 4ths, 5ths...
Scans are a good start but the only way to tell if you have cancer or not is a biopsy...but they've got to find a place to biopsy. Get another opinion, preferrably from a well respected facility. It's not cancer until a dr says it is, so ease your mind.
Best Wishes,
Eric
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | michele, eric is right. its not cancer til the biopsy says it is. i replied to u on a different post, so read that as well. BTW..we love long island! go to ronkonkoma at least once a year, andy has a sister there.
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
| | | | Joined: Feb 2010 Posts: 16 Member | OP Member Joined: Feb 2010 Posts: 16 | Thanks Eric. I have the CT scan scheduled for Monday Feb 15th. as well as appointment to see my dentist for him to look at my tongue and floor of mouth specificially. Hopefully results within a few days of that will give me some definitive answers good or bad. Regardless of the results I think I am going to go to MSKCC to see thier Head & Neck dept. The worst part of all this is the unknown of everything. After a year + with no real answer and now worsening symptoms I'm both frustrated and terrified. Everything I read points to some from of oral cancer yet how can an ENT not recognize it after a year and why would he have waited a year to order a scan? Scary stuff.
Michele Long Island Still Testing
| | | | Joined: Feb 2010 Posts: 16 Member | OP Member Joined: Feb 2010 Posts: 16 | Thanks Teresa.....I posted in 2 different places because I wasn't sure which was more appropriate a starting place. I will check out your other reply! Thank you again. Any support / info / advice I can get is great. Its a troubling time for me. Knowing others have gone through this and can advise me is a great comfort.
Michele Long Island Still Testing
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | any place u post will be found by others. try starting out in the introduce yourself forum...its for newbies. the unknown is certainly hard. lets just hope for the best!
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
| | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Jun 2007 Posts: 5,260 | Michele, to make sure of the reflux, they have a machine that you wear for 24 hrs to measure the acid you produce and to see if it is reflux, They put a couple of tubes thru your nose into your stomache and hook the machine to you. 24 hours later, they have the reflux either confirmed or you don't have it. I had this done but the reflux I had was too ,much for the machine to measure.
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: Feb 2010 Posts: 16 Member | OP Member Joined: Feb 2010 Posts: 16 | Had the CT this morning. Now I wait for the report. I also went to the dentist and he did a thorough exam of my tongue and floor of mouth and he stated he saw and felt nothing. I was pretty firm with him in that I told him I have been going through "something" with the ENT for over a year so if he sees or feels soemthing I want to know and I dont want a runaround or sugarcoating of it. I was pretty specific and asked him point blank if he felt or saw anything that could even remotely be suspicous and he again said no. If there were anything I would have demanded a biopsy. He smoothed / filed down a few lower teeth and did a Panorex of my entire jaw all at once. I should be in to see the ENT for the CT results either Weds or Thurs. The Pano the dentist took a small bone spur type of thing in my left jaw up towards the TMJ joint.,...again I asked if it looks like cancer and he said no and that I could come back on Weds. to see the oral surgeon who comes in once a week. He felt it is somethig I was born with / have had for years. I am not ashamed to say that at this point I am scared shitless. I have had a stomach ache for 4 days leading up to this scan and now having to go back to the oral surgeon just ads to it all. I want to vomit. _________________________
Michele Long Island Still Testing
| | | | Joined: Nov 2009 Posts: 396 Platinum Member (300+ posts) | Platinum Member (300+ posts) Joined: Nov 2009 Posts: 396 | its certainly normal to be scared. everyone on here will tell u that at some point they were scared. ive been scared for the last 6 months and still am. and waiting for test results is excrutiating!! just take a deep breath and relax. i know its hard. hopefully, it turns out to be nothing, but if it is...then u have found the right place for advice and support. we are here 24/7.
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
| | | | 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 might not show being scared, but my mind sure thinks about what is happening. I guess that is what makes us humans.
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
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