Hello, Mo here.

First of, all of you who are diagnosed are so wonderful to talk to everyone who posts here with questions and fear about symptoms. That is wonderful of you guys to help people like that.

So, without further ado, let me become another one of those people...

9.25
I've had symptoms now for 6+ weeks. Began with a huge tongue bite, which made me notice a scalloped/slightly enlarged tongue, which I had never noticed before. Nothing much else.

10.5
About 2 weeks later I had a tight throat and external ear pain--left only. I started feeling around in my neck and I feel some non hard, perhaps swollen lymph nodes on the left.

10.19
About a week later, throat became officially sore (still more to left) and I was feeling weak/lightheaded, so went to PCP, who measured my temp at 99.9, took a bacterial throat swab for strep, and, I think, kind of dismissed me. Told me to go to ENT if symptoms persisted in two weeks. No bacterial infection, though it could be viral, I suppose.

10.27
Symptoms did persist and got worse in the next week (mouth swelling, etc). Then got a bit better, but not completely.

10.10
This brings me to current/ongoing symptoms (all on left side):
-tight and sore throat, specifically ulcer feeling at base of tongue on left, which doesn't look particularly inflamed visually
-left ear, head, neck very mild pain/tightness/fullness
-awareness of lymph nodes in left (clicking when swallowing)
-tender spot behind left earlobe/jaw, slight bit firm
-bit of soreness in spots on left neck when I probe with firm pressure
-Lymph bump in left neck still there, though doctors don't seem to notice this

10.10
Visited ENT (pretty solid one, a surgeon, sees cancer). Scoped throat only (not nasal cavity), and found absolutely nothing at all. I mean no redness, inflammation. Nothing. Says to wait three more weeks, and if still having symptoms, come back in, redo scope, and possibly consider scan. No one has done blood work.

Now, I have looked enough to know that you all will probably just tell me to get a biopsy.

But I just wanted to post. Am thinking of seeing another ENT this week/asap for second opinion.

I am 40, female. Really healthy overall--exercise and good weight. Never smoked. Moderate+ alcohol. Do have HPV, but have been screened for cancer causing strain(s) and don't have those (16).

Do you all think I should wait 3 weeks or try to see another ENT? I am just so frustrated. The discomfort and worry is exhausting me as well.

Thanks so much!

First there is nothing obvious to biopsy, at least according to the ENT, so that isn't on the list. Clicking sound is your tempromandibular (TMJ) joint, lymph nodes can become swollen for tons of reasons only one of which is cancer. If they are swollen you will definitely know it, and painful is something that you won't miss, but means infections not cancer. Blood work will not tell you anything about cancer, but a CBC would tell you if you had an infection. Most are bacterial, but there are also viral as you noted and fungal, which if he tested for one he may not have tested for the others. The ENT to scope you, most of the time passes the scope down through your nose after a little numbing spray, and he gets to see it all from the inside of your nose all the way down to your voice box/larynx. While your fever wasn't off the charts, fever usually ties to infections, not cancer.

So having said all that, I have not answered anything really, but just given you more things to consider. People that have base of tongue cancers frequently feel like things are hard to swallow and/or are hoarse for protracted periods. Neither of which do you mention.

Obviously something isn't right. But you have several things you can pursue. You can get another ENT to look, second opinions never hurt. You could get a blood test and see if your white cell count is up, and that would point you towards an infection, you could go really off the scale and get scanned, like an MRI, and that would look for soft tissue masses. (I think right now this is overkill).

Remember that most of us here are NOT doctors, and that whatever we express to you may be correct or not, but we have seen hundreds of people come through here, and their symptomology is usually about the same when it comes to the dangerous stuff. Were I in your shoes, I would go for the second opinion, have that ENT do some blood work to eliminate an ear/throat etc. infection which could be producing some of this. You didn't mention dentist visits, and a tooth abscess could be a culprit to as far as the lymph nodes are concerned.

Clearly anything that has persisted for this long, and your body is not getting rid of, you need to find the answers for. In general though you have symptoms that are a bit over the map, and some of them are not classic oral cancer symptoms. So I hope that comment relieves any anxiety, if not giving you any firm answers.

Brian, I really appreciate the time you've taken to talk to me. I do feel a bit reassured. Thanks so much for that.

Helene, a second opinion never hurts. It sounds like you had a thorough exam being scoped with the ENT. Of course some members will say go for a biopsy. But if the doc cant see anything then he cant biopsy it. The general rule is that a sore that has been in your mouth for over 2 weeks should be checked out. It could be any number of different things besides oral cancer. I think a second opinion would help to ease your mind. Wishing you the best of luck and hope that you do not have anything wrong.

Thank you, Christine. Best wishes to you for health and recovery.

Have you tried just talking to your general doctor?? If it's an infection, they will be the ones most likely to catch it. Sit down with them and tell them all of your symptoms, although sometimes, I find, if I am worrying about things, sometimes my mind will play tricks on me, and make me feel like things are worse then they are!!

Second opinion doesn't hurt, but i would maybe check with your general doc! Mine was the best for a lot of things that my other docs just weren't getting.

Best of luck to you

I am having issues with doctors, really! They all seem to be running me around.

Still having tightness and soreness in left throat, tongue, ear, jaw, temple and tongue swollen, more to left. Visited dentist, who was not of much help. Went to endodontist, since I do have a touchy tooth on upper right. Said I needed root canal, but didn't mention infection or anything and was noncommittal if tooth was cause of all these problems.

Blood work came back negative for infection or thyroid problems. So still confused.

You all are lovely to respond to me. Thanks so much. It is just frustrating!!

Helene,

Seems to me you've had just about everything done, but the nasal scope and the CT/Pet Scan. To relieve your mind you might want to have them done.

It can't hurt to ask your doctor.

Good Luck...take care..

Connie

Helene

As Brian pointed out, the replies to your thread have not been from doctors nor can we diagnose you. I agree with Connie that you should get a nasal scope (endoscope)but my opinion is that you should get a plain old CT scan also. Definitely not a PETscan at this point as that has way too many false positives.
Why? Because the one and only symptom I had for over a year was a "fullness" in my ear that no ENT , dentist, etc could explain. I had clean endoscopes, blood work, etc etc. Yet the CT showed a stage IV tumor at the base of my tongue.
RELAX, this is probably NOT what's wrong with you. Reread Brian's post. But a CT scan would rule your obvious fear of oral cancer out so you can quit worrying about oral cancer. There is nothing to biopsy at this point.

You all are so great. I appreciate your discussing w/ me very much.

Today I did notice something new...a small, maybe 1-2mm flesh colored blister in throat/tonsil just to the left (1 inch or so) of uvula. Ugh. Going crazy here.

Have an appt. with endodontist tomorrow and followup with ENT on Thursday.

You all keep mentioning CT scans--my ENT suggested maybe MRI next--do you all think that's as useful?

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!

Praying for all clear results for you. Glad to hear your ENT is being very thorough. The waiting for the biopsy and results is HELL, but hopefully a year from now you won't even remember that!
Keep us posted.

Donna