I have nothing against dentists, endodontists etc.. But before I was diagnosed I was run around to for at least a month. Dentist to the endodontist to the periodontist back to the dentist and endodontist before I saw an oral surgeon. If you don't feel comfortable with them I would go see a maxillofacial oral surgeon as they have more experience with oral cancer and that might ease your mind a little more.

I hope you are able to get some resolution soon as I know how trying it can be do go round and round before someone figures it out.

Hello, back after a couple of months.

Finally had an soft tissue neck MRI scan--showed a pretty large complex/cyst (polyp or retention cyst mentioned?) in left maxillary sinus--filling up 2/3 of that sinus. Also a 5mm complex cyst on left parotid.

ENT wants to schedule surgery to remove sinus mass--only addressed malignancy as "very unlikely" after I asked. Is completely not interested in parotid cyst--says they are common and nothing to worry about.

Anyone have any experiences with these types of masses?

Doc and PA acted as if these masses/cysts were unrelated to each other or to the long list of symptoms I've been having over 3-4 months--this seems a bit odd to me. Do any of you think that seems correct?

To this point, I have never had a full scoping of nose--I would think that should have been done. Also, would a biopsy of mass in sinus be appropriate before going ahead with surgery?

ENT also wants a tight CT scan of sinus before surgery, which I get. But I wonder if a more global scan of upper sinuses/head/brain is in order too, since the first MRI only focused on throat and findings in sinus were actually by "accident."

I do have a second opinion scheduled for Thursday. Any feedback from you all would be invaluable.

Thanks once again.

Sorry to see you are still having problems. A second opinion is always a good idea if you are unsure about what is happening and why. The tissue that is removed will be checked for cancerous cells. The tight CT scan will show the doc anything unusual and he will take it from there. To me (Im not a medical professional) it appears you are in capable hands. Its NOT cancer til they say it is. Hope you continue to not need this oral cancer site. Best wishes!

Back once again.

On third ENT, who noted a single smallish "plaque" on back of tongue upon scoping.

Suggests that all problems are caused by sinus infection draining down throat. Wants to do another round of steroid and antibiotics, check back in a month, then move on to sinus surgery and/or biopsy the "plaque" if it's still there. She decribed it as white with red base--not too large, I guess, since she almost missed it and confused it with pus. I've had two other ENT's scope and none has mentioned/observed this yet. Do you all think it's OK to wait a month. This doc didn't seem super worried...said the spot didn't "raise any alarm bells."

Any experiences with something like this? Continued thanks for all your input. Going on 7 months with sore throat, tightness in neck, etc.

Um - this has been going on a crazy long time did they remove the mass you mentioned? Did you get pathology back on it? The plak could very well be the beginning of a lesion. Were I you in would tell them to remove it, you already gone the anti biotics and waiting route. Your first post was in nov of last year. I would be freaking at this point. To give you some perspective - I was diagnosed dec. And have had surgery, radiation and chemo, and am three weeks done my treatment in the time that you have been trying to figure out what is going on. To me this is worrisome. Have all your symptoms persisted? Swollen lymph nodes etc?

A sinus infection might cause the lymph node issues and all that - but the pain? In your throat you were describing likely not... I just think you need to continue to push until you get an answer that males sense. Just because a tumor isn't visible doesn't mean something isn't there. I don't know what more to say... Good luck and don't give up until you know - you know your body best - you know If something's not right!

Take care

Helene,

If I were you I'd call a Cancer Center take all your records and Scans to them. I'm not sure you can do that, but I certainly would give it a try. Looks like you've been around the block and I certainly know how that feels. Yes, you can make your own appointment at a Cancer Center a Dr. doesn't have to refer you, I found that out after all was said and done.

The Cancer Center I went to wanted the disks the surgeon wanted to read them not take what was written for granted.

If you feel something is wrong don't stop until you have an answer it's your body you want to know what's going on.

Look what happened to Michael Douglas he went from Doctor to Doctor one finally figured it out.

Maybe it's sinus who knows but you need answers this has gone on too long.

Hope you get answers soon...take care.
Connie

Helene,

Reading your post again I wouldn't wait a week, this has been going on 7 months and your Doctor lets this go on and on? I don't mean to alarm you my lesion on my tongue was white with a red base it was the size of my little finger tip and grew fast within 2 months.

Seems to me if it was Sinus problems the anitbotic would take care of it maybe for a short period of time, but I'm not a nurse.

Connie

Thanks for your responses.

None of the docs noted swollen lymph nodes really, once or twice a 1 cm one. I keep pointing out specific areas to each of them, and none of it seems problematic to them. At least 7 people have felt my neck up. Nothing they are concerned about...they all say my neck is very thin and easy to feel structures/nodes, as well. MRI (w/o contrast) did not show any pathological appearing lymph or anything, really. Getting a sinus CT this week.

I have a white patch on tonsil that I keep asking about and none of them say it is problematic.

Nasal polyp/cyst is still in there...all docs think just sinusitis and note purulent (um, green/yellow) drainage that they say is irritating the left side of everything.

It is just so outlandish for me to believe that anything could be terribly wrong after:
1 PCP (3 visits)
1 dentist (two visits)
1 oral surgeon (two visits)
A total of 4 different ents at 3 different practices, 5 scopings (7+ visits)

The last steroid/antibiotic round I had back in February seemed to work, but it all came back again. Seems like symptoms are up and down, not getting worse.

I have point blank asked all of them if it could be cancer. They have done everything but assure me 100% (of course they cannot do that) that is is not.

But maybe I will call and ask that the spot be biopsied asap.

I'm not even sure how one goes about getting an appt w/ a cancer center. Just call the general appt. line?

I would say try that. I'm Canadian - we need referrals - however i read somewhere here recently that if you live the states you don't need anything like that - call the local cancer center - ask for the head and neck clinic. If it's nothing -then you've wasted some time but gained peace of mind.. And a 1 cm node is fairly large - mine was 1.4 when it was removed.. But nodes can swell for a variety of reasons - good luck

Back again. CT scan again, mainly of sinuses, that polyp/inflammation has totally cleared.

Upon scoping, ENT still saw the smallish plaque; it did not grow, in fact, she said it had "calmed down" but still wants to biopsy, "as a precautionary measure." She still says that nothing is "setting off any alarm bells" to her.

Still have a bit of a twinge in tongue, throat, and tongue is a bit scalloped. When I get biopsy results I will post. Thanks for listening!