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,
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
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.
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.
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.
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.
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.
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?
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.
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.
Sloan is certainly one of the best cancer hospitals in the country. The people were nice except for the doctor I saw. He was nice enough but talked to me like my situation was small potatoes and he didn't understand why I was worried. I guess when you deal with it everyday some of the docs get that way. Good luck with your apppointment Susan.
My primary was a very small tumor on my tonsil which was completely unnoticed until it showed up in the lymph nodes in my neck. I would guess that if it hasn't spread to the lymph nodes, it would probably still be an early stage if it is cancer. Meanwhile, it's not cancer until a biopsy says it is.
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.
Did you see Dr. Shah? I htink from Head and Neck Surgery? Ive been reading about him on the Sloan site and honestly his picture looks like he is not the greatest with bedside manner, LOL. I have a thing for needing to like someones face. Wierd I know.
Sounding good, Michele. I so hope it t is a false alarm. Please let us know when you find out.
I did see Dr. Shah and his bedside manner was ok. It wasn't awesome and seemed to think my case was a waste of his time. But, he is one of the best surgeons at one of the best hospitals so I was just happy to get his opinion.
Try to relax....I know it's hard. Nothing has been determined yet and you are doing everything you can. Just take it one day at a time....
Michele, as I mentioned earlier Shah was one of two doctors we were recommended to also. The guy who recommended him spoke very highly of him. For now, we decided on the other guy (Boyle) but not because we heard anything bad about Shah.
Hopefully, you won't need it but we go next week so I can let you know how it goes.
Suzanne, can help much more with her overall experience with the hospital since we haven't been but so far the folks we have dealt with have been quite helpful.
Ok....here we go. Went to get the CAT Scan w & w/o contrast results. The report reads as follows:
Pre vertabral & para pharyngeal soft tissues are normal. The epiglottis, aryepiglottis folds, pyriform sinuses, true and false cords are unremarkable. No evidence of any mass. Parotid and submandibular salivary glands are symetrical without evidence of mass. Vascular structures are unremarkable. No evidence of lymphadenopathy. Thyroid is not enlarged and unremarkable. Impression: Normal CT with and without contrast.
About 2 hours after picking the disk and report up at the Imaging center the ENT's office called to tell me / confirm that everything is normal.
Also had 2nd visit with the oral surgeon this morning. He can not see or feel anything abnormal and asked to see the CT results once I had them to confirm that there is nothing there.
Ive also had 4 or 5 direct and indirect laryngoscopy procedures, nasal endoscopys, FEES test, an upper GI / endoscopy w/ biopsy and tons of exams by GP's / ENT / Gastro / General Dentist & Oral Surgeon.
Im relieved. Could this all be from nerves/ stress or glossopharyngeal neuralgia? Next step: neurologist
That's great news. Be happy.
No one here is going to be able to tell you what is going on and it's good that you are seeking further medical opinions.
Good luck and keep us posted.
That is wondeful news Michele. See, sometime it's good to be unremarkable!!