Amanda,
Call him or the NP back and tell them your concerns. I'm not a doctor but I if used the "differential diagnosis" guidelines, I would be treating you for an infection also. You can always get an second opinion from another ENT. Try to find one with cancer experience and not one who spends all of his time sticking tubes in kids ears (not that yours does - but there are sub specialties within specialties). A comprehensive cancer center would be able to rule out cancer. I still don't think you have cancer but I have seen enough children at the CCC, while I was in treatment, to know that young people do get it. I have to admit though, I don't recall meeting any with oral cancer.

What makes you think that you have oral cancer? It could be something as simple as plain old tonsillitus. You need to give us more information if you want us to "second guess" what's going on. Like what kind of antibiotics? Maybe he switched you to a really powerful one? Like Cipro?

Have other close family members had cancer? Do people smoke in your household? Do you live next door to an oil refinery? At 19, you should be out enjoying your life and not worrying about cancer. Where does all of this fear about cancer come from?

"Second guess" is the best we can do over the internet. Our primary mission is actually to help survivors with post treatment issues, mainly by sharing our experiences. Secondary would be patient advocacy.

If it is cancer, I suspected oral cancer because whatever is in my neck seems to be growing down from right under the jaw down to in front of my windpipe. Plus the floor of my mouth on the right side feels more raised up than the left side. I'm most worried about cancer because I have had 6 doctor visits so far, all of whom think that this "might" be an infection. I have taken 30 erythromycin pills, and today am on my last dose of Ketek or telithromycin (a 10 pill supply with the front of the box reading 400 mg). The first set of pills did seem to lower my blood count a bit, but did not change the swollen nodes in my neck at all. This second set also has not made a difference. As to family members with cancer, my mother had cancer of the stomach lining (I think) and my grandfather had some type of throat cancer (although he developed it late in life and smoked for many years). I don't live next to an oil refinery, but both of my parents have been smoking my entire life. And I am so sorry to take anything at all away from those who are truly sick, but I've probably done the worst thing I can by researching online and finding that hard, swollen, painless lymph nodes are generally not a good sign, especially since I haven't been sick or had any other symptoms at all. And after 6 doctor visits with no definitive diagnosis, I'm starting to lose faith in them as well. So far I've encountered the standard approach: You're 19, this has to be an infection because we don't see that many people your age who do have cancer. But as Brian said, infectious nodes are supposed to hurt. Mine never have at any point during all of this. And I don't want to keep waiting and waiting for months if this isn't an infection, because I really don't think it is. I don't hurt and I'm not physically sick. And I typically never jump to conclusions- I hate visiting the doctors and I hate taking pills, but this has really gotten me shaken. And again, I'm so sorry to take away from patients on this board, but I am so depressed at hearing, "Well, this MIGHT be an infection, so we'll treat you for that." I just want a doctor to tell me the EXACT reason why this is going on, not a maybe or perhaps.

Amanda,
I have to agree with you. It isn't right that you should be put off for months. You don't need to apologize - you definitely have valid concerns and you are in the right place. You are a patient on this board. But what the doctors are telling is indeed factual, they don't see many patients presenting with oral cancer in your age group.

Many of us also had a couple of courses of antibiotics (to no effect) before we saw a specialist. Allow me to be more specific here, most us started with GP's or PCP's and went through several courses of antibiotics before even getting a referal to an ENT. The ENT that first looked at me Dx'd me, accurately, within 5 seconds, without a biopsy, strictly based on a visual exam - not even a scope.

I wasn't trying to be facetious when I inquired about your background, but it has to be part of your differential diagnosis. Environmental and genetic conditions have to be taken under consideration. Being exposed to second hand smoke all of your life is an additional risk factor but bear in mind that some here smoked all their life and still didn't develop cancer until their 50's.

We occasionally see other young people here who have also had multiple doctor/specialist visits and were found with nothing, yet were convinced they had cancer. We have also heard of a blown diagnosis when a doctor disallowed the possibility of cancer because of age and statistical profile. Medicine is more of an art than a science and process of elimination is the main diagnostic tool -it is the basis for "differential diagnosis". I have had isolated infections - even fistulas and I felt fine otherwise with no other symptoms.

I would present it as you did to me, that you have a history of cancer in your family and were exposed to second hand smoke all of your life and you are concerned about swollen nodes and no pain. Bear in mind though that swollen nodes would be more symptomatic of a primary (or an occult primary) somewhere else (unless you have lymphoma) besides a simple infection.

If it is lymphoma, blood tests and/or an FNA would reveal it.

Have you had a dental x-ray to rule out your wisdom teeth? You are the perfect age for an infection from impacted wisdom teeth.

The ENT actually does know about the previous cases of cancer in my family as well as my exposure to second hand smoke. And I do have one impacted wisdom tooth on my right side, but there is no pain from it and I have a swollen node on my left side so I figured that it wouldn't cause both sides to swell. Plus the oral surgeon said he couldn't find any signs of infection in my mouth. Honestly, if it was just a swollen node that I felt I would probably let this go. But the node feels like it extends out onto my windpipe. And I can feel a bunch of little lumps as well as one bigger bump where it feels like these smaller ones end (it's not the Adam's apple, though, it's a lot further above that), so after reading stuff online I think, "Uh oh, that could be extracapsular spread." And it really saddens me that my mother is convinced that absolutely nothing is wrong because the doctor simply felt the one node and said that he didn't "think" it was cancer. I just can't think of anything else that causes something like, especially since it has gradually gotten bigger since I first found it. And I hope that it does turn out to be something that isn't serious, because it seems like I'm going to have to wait those 2 months (because I'll have no transportation and it's practically impossible to get into see a specialist in Richmond).

Amanda,

I would not wait 2 months. If this is not gone in 2 weeks, please see someone else and demand that tests are done. I would take someone else with you as a witness and also tell them that you want a copy of your records at the end of the visit. I know this might sound silly, but maybe them being worried about getting sued if this is something might prompt them to take the actions that you are looking for right now. If necessary, go outside of Richmond. You can always go there for treatment if it is something, but you need to get in sooner than later.

Thanks for the advice. I'm calling my ENT back today and telling him my concerns and that I think the one lymph node has actually gotten bigger since I started (and now finished) his set of antibiotics. And I'm going to my college's Student Health Services for another opinion, mainly because they are directly affiliated with MCV, which is a CCC that I live only 2 miles from on campus.

Just an update- I called my ENT to tell him I'd like to discuss some of my concerns and I'm still waiting to hear back from him. Plus I have an appointment with a hematologist scheduled for September 14, so maybe he can suggest something.

I hope everyone is doing well!

I just thought I'd update and say that I went to see the hematologist (who also happened to be an oncologist) yesterday. After feeling my lumps, he first remarked that they were not lymph nodes at all. He is pretty sure that they are cysts, and very small ones at that (according to him, they're 2 mm, if that), but he did schedule a CT scan for my own peace of mind. I feel kind of embarassed now, especially thinking that something was seriously wrong with me because I had hard lymph nodes that weren't going away, but if they are cysts then I guess they're supposed to feel that way. Thanks everyone for your support, though, and you are in my prayers every day.

Hi Amanda,

You never have to feel embarassed, especially here. It's always better to err on the side of caution and get checked out. Since my Aunt has had BOT SCC, I've been to the ENT myself after finding some red spots on the far far back of my tongue after I had the flu. I have a great ENT who is also a head and neck surgeon, so I made an appointment and saw him as soon as I could. The first thing he asked me was "you can see that far down your tongue?" Then I explained to him about my Aunt and that we examine our mouths now. He went the whole route, examined my mouth and throat, shoved a scope up my nose and down my throat and declared those red spots large taste buds. I was very very happy when he said "you're perfectly normal. Pretty, pink and normal." I did a similiar thing when I recovered from a bout of classic chest flu and I found a pliable jelly bean in my neck. Three doctors checked me out and my Endocrinologist (who knows what my neck feels like because I have thyroid disease) told me I had an inflammatory node and it would be gone or at least smaller in six months. Yup, much smaller in six months. It's always better to be cautious, but while you're being cautious, try not to make yourself sick with worry. I've done that to myself, and it doesn't help you get through it any better or any faster.

I am surprised that anyone would notice something that is only 2mm.... after all, that is about the size of a pencil lead. More than that, I do not belive that any doctor via palpation of a hard spot can tell you it is a cyst or whatever. Just how does he, through touch only, determine that it is a cyst? It is a good thing that you are getting scans to get a big picture view of everything.