If a person has a primary tumor on the base of the tongue but and it has spead to the retomolar trigone, soft palate, or tonsillar pillars (after tonsillectomy) does it automaticaly mean stage 4. I was just curious because on the staging area of the website, it says that stage four is a tumor and size that has spead to any other area of oral cavity. I took that to mean the primary tumor and any cancerous cells can only be in one area not to be classified as stage 3. Any help in understanding this would be greatly appreciated.

Sherrone,

You haven't even been confirmed with cancer yet so why are you asking a question like that? Come on first things first.

I know David. I actually went to ENT today and he told me he thinks I should get a prescription for anxiety medication. I've dropped 5lbs in one week. That makes me 5'6 123 lbs....not much more to lose. I was a total wreck. My appt was at 8:30 and as you can see by my post, I've been awake since 2am. I need to get a grip. I CT scan has been scheduled. He examined me and sprayed something in my nose and put a long tube down my throat. He didn't mention a biopsy yet but I go back to my regular dentist tomo to have a filling replaced and she's going to do a brush biopsy of the white area. I know this isn't always accurate but with that and CT scan, should something show up? He did exam the two areas on the top base of my tongue and said they looked liked enlarged capillaries or papillaries....I even remember now because I'm so fatigued. He thought the area that the dentist was concerned about was different so needed further investigation. I'm really confused because I just assumed a biopsy would be next. I've read on here so many times that only a pathologist can tell you if something is abnormal for sure. I'm going to try and calm down because my body is so tired right now and I'm nearly dehydrated. You just never think that something like this could happen to you. I'm trying to be as vigilant as possible. I have my second appt at 1:30 with my gyn. I'm thinking about asking her to swab my mouth for HPV. I know, I know, I'm totally spinning out of control here without even knowing anything yet. I will definitely take something to sleep tonight. Thanks for the reply David. I know i sound like i half crazed, but just have never been this scared in my life.

I've been reading you for a while. Today you brought tears to my eyes, it brought back memories. I ranted and raved like a mad woman. All my Dr.s moved slow, all but the last one who did what the others were to do. My opinion demand a biopsy, demand a CT Scan I see you have one scheduled. IF that is a big IF you have cancer get to a Cancer Center. Seeing your in Dallas you have MD Andersen, which I've heard is an excellent Cancer Center. IF you do have Cancer call MD Andersen schedule an appointment and take all your medical records with you.

It's easy to say calm down been where you are right now. Keep your head on your shoulders listen to what people have to say in the forum. I know you don't know which way to go first, but do the above.

I'm pulling for you take care and God Bless.

Sherrone,

We have seen the diagnosis of enlarged Papillaries here before. That�s a good thing as it is not cancer. That condition usually shows up on two sides of the tongue and cancer almost never does (one side only).

It's the white spot that is worrisome. It could be a number of things and cancer is just one of them, but it is the big one.

I saw three doctors (the first two said I did NOT have cancer) before I was diagnosed. I was vigilant in that I would not accept "I am not sure what it is" as an answer and insisted on knowing exactly what it was (It was cancer). I had it easier then you as I was told explicitly that I did not have cancer. After that I just wanted to know what I was dealing with. My spot was red not white.

I ended up being treated for a stage one cancer and my prognosis moving forward from here is excellent. The earlier you get these the better by far. I have a thirteen-year-old son so I can empathize with you on being so worried.

Having said that, I think you have moved way to far mentally into the (I Have Cancer) frame of mind. Right now you have a suspicious white spot. It is going to be a while (days) before you get any results from the brush biopsy, so you are going to have to find some way to calm yourself. Keep in mind that the odds are you have something other than cancer

Sherrone,

Fill that anti anxiety prescrip.

Re the HPV, there is NO swab test or any test for that matter for HPV in the oral cavity. The only way to determine the presence of HPV orally is to test predetermined cancer cells from a biopsy. Not many cancer facilities are even equipped to do the HPV test.

There has been a recent development. A company called oral DNA has introduced an oral test for HPV16. You swish with some saline solution to collect loose surface cells, and then the PCR test is done on them in a conventional manner. The findings are of relative value to anyone in my opinion, in that of Gillison, and that of Posner at Dana Farber. It is not a definitive indication of many things, except at that time of that day, you had some HPV16 dna in your oral environment. What you can do with that information is - not much. I will explain this in more detail if desired. But Quest Diagnostics, a huge, wealthy company is going to be pushing this test through dentists. But what people will do the results is unknown. There is no proof that getting the virus is going to mean you will get a cancer. Most people's immune systems are going to deal with it. It is people that develop persistent infections, that go on for protracted times that are at risk. But if you re test someone in say 12 months, and they are again HPV16 +, does that mean that it is persisting or does it mean that your immune system cleared it, and you just got reinfected with it between tests? No way to know. Value of the test unknown according to Gillilson.

I would also say that brush cytology is not a strong means of diagnosis, and a positive finding is not enough to do anything with except get a gold standard punch or incisional biopsy, for confirmation of any brush collection findings which can be highly ambiguous. That is the only definitive action you should take based on brush cytology and histopathology findings.

Thanks for all of the great information Brian. I know that the brush biopsy is not the diagnostic method needed to confirm cancer. However, the ENT dr went straight for the CT scan and since I'm going back to my dentist tomorrow, might as well let her do it. She's not the type to take no for an answer and she's very very observant and careful. I figure that it can't hurt anything because if I don't feel ok with everything, rest assured I will keep pushing to make sure everything is like it's supposed to be. I know her and I know she will refer me to the oral surgeon immediately. I actually asked the ENT dr about the correlation between HPV and oral cancer. His exact words, "that's a very rare occurrence. You are young, healthy, non-smoker, non-drinker, and there's a small connection associated with HPV." I must say that after reading the studies and research on the subject, and then hearing him say that, I knew I needed to make sure that I keep pushing to have a definitive answer. To be honest, I lost a little faith in him. In my opinion, if there's any data out there that proves a direct link to cancer, the dr should never be so dismissive. I mean, he can afford to be so casual, it's my life not his......just saying.

Thanks Connie. I appreciate your very heartfelt response. I think if there was ever a time in my life to overreact and be overly cautious, it's now. I have known so many people that are affected by cancer in some way. There is a woman in my office that had stage 4 Esophageal Cancer that had met to I believe her shoulder. She went in for annual yearly check up and mentioned to her doctor that she thought she had acid reflux. He asked her if she had trouble swallowing and she said yes. He immediately started feeling her neck and chest and found a small mass under her shoulder. Turns out her tumor was 20 cm long and wrapped around. Her cancer dr at Arlington Cancer Center had just returned to the Dallas area after working for fourteen years at MD Anderson in Houston. She decided to not have the invasive surgery and instead had the lymph nodes removed with chemo and rad. That was six years ago. He told her a couple years later that he didn't challenge her on the surgery because he didn't think she would make it either way. She still takes a pill form of chemo and was just at the cancer center on Saturday. Everything is still No Evidence of Disease. So, I think I will continue to press for answers. I will just try to turn down the crazy volume just a bit. Thanks again for your reply. I could feel the emotion in it and definitely tugged on my heartstrings.