Hi there,
I have been suffering with a right sided sore throat for a year now. I have been to an ENT 6 times. He has done a scope 3 times, the last one being a few months ago. I had the pain when he did it. I had a ct of the neck and head done last October, a neck ultrasound, a neck x-ray, blood work and I think thats it. My ent says I have debris collecting in my right tonsil but he doesn't want to remove them. I'm 33 by the way. He says if I had cancer in my tonsil or throat he would have seen it. He said he won't even do a biopsy because he doesn't see any abnormal tissue that he could biopsy. I am still scared. My neck on that side hurts a bit, my throat (most of the time), it has gone away for maybe a week or two, but always comes back. I can see white stuff in that tonsil sometimes but I have picked them out and that tonsil still hurts. Sometimes my ear hurts too. I don't know what to think, the ent seems like a really thorough doctor, he doesn't feel any lumps in my neck which is quite thin. He said, not always, but most time there is a lump in the neck with these types of cancers. With the tests that I have had, would cancer most likely have been seen. I should mention that the tonsil that is giving me the problem is a bit smaller than the other one. The ent said if it were cancer it would be larger not smaller.
Thanks for any insight,
Michelle

Given all the testing that you have been through, cancer would surely have been detected if there were something there to see. The fact that your symptoms persist is not right. It could be an indication of infection, and this should be explored further. I would ask the doctor for a referral to another doctor for a second opinion. This should not offend him, and actually given that he cannot find the cause of your discomfort or symptoms, something that he should have done anyway. If he seems reluctant at all, just get another ENT on your own to review all that has been done to this stage. While what you are experiencing likely isn't cancer, it is something.... I had two doctors unable to give me a proper diagnosis, before I finally went to the final guy who got it right. Another set of eyes, ideas, and opinions is worth the peace of mind.

Could the white stuff in my tonsil be causing the sore throat? It is more sore since I started picking them out. Thank you for saying you doubt it is cancer. That is what the ent keeps telling me. He does think it is my tonsil, but doesn't want to remove them. He feels the pain of surgery and the risks would be worse than my constant sore throat. I have heard that the scope through the nose usually would detect a tumor or cancer in the throat, especially when you have pain. I guess it is a good sign that he didn't see anything then.
Thank you for your input. My stepfather just finished treatments for throat cancer and is in remission. I just lost my mother to cancer in January. I am very scared. Mother of 4.

You might try having an oral surgeon look at it the next time instead of an ENT.....different training and perspective.

Michelle, there may be some comfort in knowing that there are other things that your symptoms are caused by. Many of us that have had a cancer diagnosis, had no symptoms at all. I agree with Brian in that you should seek other opinions about your symptoms but do not fear the worst. None of us here are able at a distance nor qualified to say what it is you are having problems with. Follow through with at least several opinions about your symptoms. Let us know how it comes out.

It's me again, still having the same throat problems. It's now been over a year. Right sided sore throat with a little tongue pain back there. I am getting tonsil stones out of my right tonsil for the past few months but am still concerned about this discomfort. I saw my ent about 2 months ago, he just looked in this time, I have seen him many times, he said, nope, don't see any cancer! No scope this time or anything. He is a well respected ENT at a teaching hospital.
My question is, if this were throat cancer, would I be having other symptoms by now. I mean I have had the pain for over a year now in that same area. (right sided, near tonsil and tongue). Would I have a neck lump or something, or more pain?
Thanks for any input. I'm just scared and don't know what to do from here.

Hi Michelle,
My stage III/IV tonsil cancer had no sensation of pain at all. A dentist friend pointed out that is a worse possible scenario and it was. I originally thought I may have had a peritonsillar abcess (PTA) but absence of pain is not normal in PTA. PTA is very difficult to cure because of poor blood supply to where the infection is, so antibiotics are not very effective. PTA can take a very long time to cure and recurrence can be frequent.

I have a friend, with tonsil stones and I will contact him and see if he can shed any light.

Unless you are a heavy drinker and/or tobacco user, 33 is a little young for throat cancer, in general. Most of us who get this are older, many being in their mid 50's like I was. My radiation oncologist told me that she is starting to see more patients in their 30's and that is mainly because of starting heavy cigarette smoking in their teens.

Tonsillectomy, as an adult, is considered major surgery, so many ENT's like to avoid doing that.

The testing (and amount of visits) you have had so far seems reasonable and prudent. My head & neck surgeon doesn't use the scope much either, he prefers to "visualize" the area with mirrors and palpation.

Incidentally, an MRI might shed some light on the area also since they are especially good at capturing details in the soft tissue.

As Brian suggested earlier, a second opinion might bring you some relief from your fear. It does seem like a long time to suffer in any case.

Thank you so much. I keep trying to tell myself that throat cancer or tonsil cancer would be quite noticable by now. Something is wrong, but I just don't know what. I am 33, a mild smoker, have never been a heavy one, but I am trying very hard to quit.

Thanks again,
Michelle

Did your tonsil swell? You see my pain is all right sided, but that tonsil seems smaller than the left one. Some of the lymph tissue seems to bother me though. Anyway, thanks for any help. I'm still trying to get another appointment with my ent.

Mich4

Hi Michelle,
My tonsil itself didn't swell but it had a 6 cm x 3 cm polyp type tumor grwing off of it. It literally filled my entire throat (behind the Uvula) and was readily visible.

The tonsil IS lymph tissue.

Stop smoking - now! This is a wake up call. You are fortunate to get one. Being a "mild smoker" and it being "hard to quit" is contradictory. Get over your denial and just do it. Quitting smoking won't kill you but continuing will.

It sounds like you may have some chronic infection, which could also involve your lymph nodes. Either way, while we would all like to help you here, the only real answer you are going to get is from another doctor who not only looks carefully at your mouth and throat, but takes swabs, does blood work, and if warrented uses other, perhaps imaging techniques to determine what's what. You need to get in to see someone. Regardless of bacterial or viral infections or the big C, you need an answer so that this can be resolved. We are unique individuals and your symptoms may or may not minic those of another persons disease. Even with similar symptoms, you could have very different causes.

Thank you,

I have a follow up with the ent on the 29th. That is the earliest time possible. I will quit smoking, you are right about being in denial.

My ent has done an xray, ultra sound and a ct. That was all done last october when my pain was quite bad. Nothing showed, had numerous bloodtests and I even asked for a biopsy. He said there wasn't anything to biopsy.
I guess I will know soon.

Thanks, Michelle I'm just very scared. I keep telling myself they said it was nothing sinister, but I just keep worrying and looking in my throat all day.
Thanks everyone and best wishes to you all.

Just an update. I was back at my ent last week, he just looked in my throat, not with the scope or anything. The pain is still there, but I did have two weeks with no pain at all not too long ago. He says it can't be cancer if the pain subsided for two weeks. I don't think he wants to do anymore tests. He doesn't want to take my tonsils out either. I'm a little frustrated, its hard to get a second opinion when I am going to one of the top ents at a teaching hospital. I just pray that if it were throat or tongue cancer that I would really know it now. It has been almost 15 months. I read the odd story where people have had it for that long and didn't know it until a lump popped out on their neck. I keep feeling my neck for lumps.
Thank you to all on this board. I wish my stepfather had this board when he went through his treatments. He is still cancer free, almost a year now!
Thanks again,
Michelle

Even the best can make a bad judgment call. This is not to say that he has, but we hear it so much on the board that someone missed this, or disregarded that, it gives you cause for pause so to speak, when you hear this again and again. Pain is a symptom not a disease. To have pain, there must exist a problem. The process of differential diagnosis is like a mystery; you have a clue, in your case pain, now you must run through all the possible reasons to determine the answer to the mystery of why it exists. Often times people are so accustomed to the predictable answer that they exclude the less obvious answers. Just because you have been seen by someone of some notoriety, does not mean that you shouldn't seek another opinion form a different doctor of perhaps a different discipline. The continuation of symptoms is a sign that should be followed up on. While this doctor may be celebrated for his expertise, he, like all of us can make a mistake. Second opinions are usually worth the effort... and you do not need a referral from him to go and get one. None of this means that the big C is in your life, but something is not right. As I said before, 15 months is a long time to live with a symptom that does not resolve. You need another opinion.

Hi Michelle:

The decision to remove tonsils in adults isn't usually made lightly because of the intense pain post-operatively as well as the slow recovery, problems resuming eating, and risk of bleeding with the surgery. Grown ups just don't bounce back the way kids do!On the flip side,the decision to do so is a quality of life issue as in how badly is the quality of your life being ipacted negatively by your current symptoms? It seems you are being impacted daily and feel stressed by the situation. If so, it is worth another opinion and considering the surgery for peace of mind and resolution to the symptoms.

Keep us posted,

Kim

hi michelle,
Iam 33 yrs old and have alot of your symptoms i have pain in my throat beginning of me throat and pain in neck and ear and the back of tongue and down further by the floor alittle bit it is all on my right side. I thoght i feel a lump in the neck i have been to ent oral surgeon that took a biopsy in the front of my tongue because i felt painit came back nothing i have been like this more then 2 years i dont have any tonsils they were taken out when i was youyng i dont know what to do myself had scopes down my throat at least 4 time doc dont see niothing am going now fora mri of the pharnax and larnyx .I would like to ask a guestion when they take an mri of the pharnyx and larynx do they get the back of tongue ,base of tongue does anybody know thanks joann

Hey Michelle, I understand your feeling frustrated when you know something isn't right and your doctor can't figure out just what it is. I have been having problems since this past July with an ulcer in my throat that one general practioner and my dentist saw, but two different oral surgeons couldn't see. They both did thorough exams too, and told me all they can see is "normal lymph tissue". In the meantime I have gotten two white spots on my tonsil too. Unlike you, I have never experienced pain, but I find myself looking into a mirror a dozen times a day and freaking out over it all. I will not give up until I get an answer that I am satisfied with. I was told the oral surgeons would do biopsies before I saw them, but after seeing me, they felt no need to do one, so I pressed on and now have an appt with an ENT doctor next tuesday. (the spots on my tonsil were not there when I saw the oral surgeons), so in my mind I imagine the worst, that maybe the ulcerated area I see IS cancer, and that it's now spread to my tonsil? I'm hoping and praying that this is all just my imagination going wild from NOT knowing? Actually, Ive had to reschedule the ENT appt two times, because my husband had to have surgery for a brain tumor this month. The waiting is horrible. I am 48 years old and was a heavy smoker and drinker for many years. I have a daughter who gets white spots on her tonsils too and her dentist told her they are food collecting in them and he was able to scrape them off, like you said you have done, but she has not had pain with them. When I saw one of the oral surgeons for my problem, he asked if I had my tonsils removed....which I haven't, but one of them somehow disentegrated (?) so I now only have one, which is the one with the white spots on it. My nephew somehow doesn't have either of his now, and he never had a tonsilectomy either. I hope you go for a second opinion and get an answer to your symptoms, I know how hard the NOT knowing is. Shelley

Hi Joannc, Your MRI will most likely include the area at the back of your tonge. To be sure, ask the people that will set up the MRI, they can tell you for sure. More than likely they will do most of your head and neck. I hope they find the cause of your pain and that it is something easy to take care of. My guess is it will not be cancer because you probably would have had more serious problems by now if it was.

Be sure you ask the doctors lots of questions and bring someone with to take notes.

Still having problems. It's been 20 months now. Believe it or not the pain in the right tonsil has been subsiding a bit, but now I have pain and a tiny bit of swelling in the left tonsil. I still worry but am going to try to get into the ent again. I went to see him about 3 months ago, everything fine he said. Now I have a bump on my gum behind my last molar on the left side. It hurts a bit, is whitish in colour and looks like a pimple but doesn't want to pop. I am still worried about cancer and feel so selfish because of what all of you are going through and have been through. The anxiety is killing me.

Thank you all for responding to me.

ANyone, I'm still dealing with this sore throat. I go to the ent on the 31st again, but I know they won't find anything. Everything still looks the same. Just these stupid tonsil stones. It's been almost 2 years now.
Thanks to all of you brave people. I wish my stepfather could come on here and read these things.

Michelle: Know how concerned you are and don't want to raise your fear level. But (you knew a but was coming, right) I was finally diagnosed in 10/03 with cancer of unknown origin due to lymph node lump of 3.5cm. Among other things, a tonsilectomy was performed 11/19/03 and the ENT said he looked at it and was sure no cancer was on either side. They sent it for biopsy just to be sure and ... cancer in right tonsil. Even with the tonsil in his hand, the ENT, a very experienced and trained guy, still couldn't see the tumor. FYI, it was 2.1cm. I would strongly suggest you get someone to get a tissue sample and biopsy the tonsil. I don't know if they can do it with a sonogram directed needle or if a snip is required, but whatever it takes if I were you I would insist on a biopsy. 2 years of sore throat is 23+ months too long in my opinion. Good luck. Regards, Kirk

Michelle:
My tonsil looked normal, too. But I had a sore throat for a month and what I thought was a swollen gland in my neck. I did not smoke and just turned 50. After a month of trying antibiotics and waiting to get into an ENT they finally did a tonsilectomy. The doctor thought chance of cancer was very remote because I did not fit the statistics. But it was and by the time they scheduled the neck dissection it had spread to 3 lymph nodes. You need to get another opinion. Second opinions are usually covered by insurance. And the pain of the tonsilectomy wasn't as bad as childbirth ...remember, you survived 4 of those!! Praying for you - Kris

I think you need to see a different ENT, oral surgeon or dental medicine specialist. Having the same person look at you over and over again with no diagnosis only indicates to me that this person, as good as his chair side manner may be doesn't know what he is looking at and has no plan to put into place to find out what the situation really is. IF.... IF this were something bad, in this amount of time you could have gone from a very treatable stage one to a hard to treat stage 4

My inital ulcer removal from the tongue wasn't expected to be cancerous. My oral surgeon joked I'd be the first hypnosis candidate to stop biting my tongue before finding out.

Once we found out it was cancer, I saw a zillion different doctors in Boston (arguably the medical meca of the world) and had a zillion tests. The physicals they gave me, the blood tests they gave me, the 3 MRI's they gave me, and the CT they gave me all came back negative for additional cancer. Since my initial excision didn't produce clean margins, the Dana Farber doctors wanted to go back in "just in case". They found another portion of the tumor - nearly 1 cm in diameter in my tongue.

My advice: GO TO DIFFERENT DOCTORS UNTIL THEY DIAGNOSE YOU PROPERLY. There's no way every doctor knows everything about every problem or disease. You are your only advocate in those offices. Demand attention, tests, and whatever it takes. Most of us aren't used to being rude and demanding; we feel as though "doctor knows best" and accept their explanations. They've gone through med-school and training - they'll have thick skin for your demands and second-guesses. If they don't, find someone else!

Go gettum!
Sabrina

Hi Michelle: I just wanted you to know that I realize how hard it can be to quit smoking, but keep trying. I just quit 2 weeks ago. I went for hypnosis and it really helped but in addition to that I watched my mom die from cancer recently. She was only diagnosed in February with pancreatic cancer (#1 cause is smoking) and she died April 16th, only 2 months after diagnosis.Maybe hypnosis would work for you too, keep trying you can do it.

Sharon

Okay, I still haven't been back to the ent, but am planning to go. Now my right side tonsil isn't sore anymore, but the left one is most of the time. It swells ocassionally, not much, but some and causes me discomfort. The last time I was at the ent the doc said it had some scar tissue in it, but that was it. He did a fairly thorough exam, and I did have scopes and stuff way back. It has been since february now that the left side has been bothering me. It just feels like something is in it. I have managed to get tonsil stones out of the right one on a regular basis and that really helps with the pain.
Now, the weird thing, sometimes the pain will go away completely for a week, two weeks, the longest period was three weeks with no pain. Does this happen with throat cancer? Can it just go away and come back again. Thanks to all who have answered me. My ent does not want to take my tonsils out, I am going to try to get into another ent, but it takes time where I am.
Thanks for any insight from anyone.
Take care and bless you all.

Almost two years out since the beginning of all this and a long time since the beginning of this thread. I just re read it all again, and it would appear that you have chosen to continue seeing the same doctor and not get other opinions from different types of specialists. Why would be my first question? As an observation only, you are two years into this. If this were cancer, you would be significantly worse today then when you first started talking about this. It would appear that you have some type of chronic condition that needs to be properly diagnosed and resolved, either through medication or tonsillectomy. After two years, the likelihood that this is a cancer is extremely low, though not impossible. Do yourself a favor and go to someplace new for a diagnosis, from a different specialist. Go to a university based dental/medical clinic. They will have a variety of doctors from different backgrounds that together will finally get to the bottom of this and get it taken care of. Living with it as is seems unwise.

Thank you, this is what I am in the process of doing. I am seeing a University/hospital specialist, they are all part and parcel. It has been difficult to get follow up appointments, let alone a different ent. I will keep trying though. It just worries me that it is now the other tonsil.
Again, thanks. I know everyone here is dealing with bigger issues than me right now.

Don't take that post in a negative way. I just wanted to be sure you were seeing someone that was going to finally get you the right answer and a solution to go with it. It sounds like you are on the right track now.

Mich4, I don't want to stir up anything, but if I were you, I would follow Brian's advice quickly. My first ENT did a scope search and needle biopsy and couldn't find any evidence of cancer in the tonsil or lymph node, though he did call it cancer from the start. He just couldn't prove it with any standard office test. He finally sent me to the hospital for a sonogram directed needle biopsy for the lymph node which came back positive for cancer. To try and find the primary site, he scheduled me for surgery and removed the tonsils and took samples from various other places. He has done lots of these checks and can easily recognize cancer. He looked at the tonsils after removal and could not see any sign of cancer, but sent them to the pathologist anyhow. Came back with a 2+ cm tumor, even after a direct examination could not detect it after removal. I would suggest immediate consultation with another specialist.