I was also sent to an oral surgeon. Thats where I had my biopsy done. Some oral surgeons will be very experienced with oral cancer patients while others concentrate more on implants and wisdom teeth extractions. Try to research the oral surgeon you have the referral for and hopefully they will be able to help you. Do NOT give up!!!! Something isnt right, you need to find out whats going on. Hang in there and stay away from those cigs!!!!

Penny,

Welcome to the forum, you've come to the right place for your questions. I hear you about going from one doctor to another. You need to see an Oral Surgeon.

I had a tumor growing on the side of my tongue it was painful, it started to bleed and grow under my tongue by the time I got to a Cancer Center.

Go to an Oral Surgeon asap find one who will take a biopsy. There is nothing to a biopsy, I'm being honest. I'm the biggest baby and afraid of needles, I close my eyes. He'll freeze it and scrap a little off to send to the lab. I had a couple of stitches and they dissolve.

Take care and Good Luck keep us posted.

Connie

Hi Penny,
You are going to have to advocate for yourself. I would be incredibly frustrated right now too. I'm so sorry you are going through this. Really, find an ENT who has OC experience. Everyone is right about that. I would not beat around the bush anymore. If you are concerned, pound the pavement until you have an answer.
When Kevin had oc he had one lymph node on the right side of his throat that was hard as a rock. It didn't move, smoosh or hurt at all. In his case he had had the oc on the base of his tongue for awhile and it had spread to the lymph nodes. (This node had been enlarged for quite awhile before he said anything.) One was huge, the rest were just enlarged. We were tossed around for 6 weeks before we finally got an MRI and then the biopsy, PET and surgical biopsy. By then he had major node involvement, but thank goodness it hadn't gone to his chest. If I hadn't gotten pushy, I know it would have been put off way longer because Kevin was not a smoker or drinker. None of his Dr's believed it could be cancer. It was HPV+, which is very common in BOT OC.
Anyway, all this to say...Be a pushy broad. It's YOUR life!!
Keep in touch with us.
Kathy

Do go see an oral surgeon. and ENT world be preferable - though one who specializes in oral cancer is the king you need. Feel free to vent here. Dentist if they are experienced and have seen oral cancer are a good starting point but you really need a good ENT. Did he say any thing else about your Parotids? They are behind where you described your ulcer as being, bu what he was saying may have a bearing in term o a possible glandular infection. Please don't wait too long to have your cheek checked ou I don't know if it's cancer but, probably not, but it will ease your mind to know whats up... Good luck!

Hi everyone,

Just got home from work and feeling terrible . I have decided to contact someone at Moore's Cancer Center in San Diego. My question is, do they do diagnosis at these Cancer Centers or are they only for treatment after diagnosis. I am just trying to figure out how to find someone with experience dealing with cancer so I can find out whether or not that is the issue.

I keep holding on to hope that this is merely some sort of infection. Unfortunately my recent blood tests don't support that theory. I don't know if you can have an infection with no reaction revealed in your blood count. Here's hoping.

Even the prospect of this is so devistating. It has been a really rough six years or so, and a few months ago I finally moved out to California. I have wanted to be here for ten years, and I finally am here and with the most amazing man in the world to boot. (No offense to the guys in here who thought THEY were the most amazing.) I am looking forward to a great future, and its hard not to think about how this will change things.

I am so sorry you are all going through this. I can't say that enough. It is down-right terrifying thinking you may have cancer, to actually have it and manage to keep your wits about you is impressive. I find you all impressive and inspirational and I hope that I handle myself as graciously no matter what the outcome.

If anyone knows the answer to my question about cancer centers and diagnosis, please let me know.

Thanks again

I wish I could answer definitively but Im Canadian - though I do get your love for CA I travel there annually its my vegan Mecca! I have heard people on the board say you can go directly to a cancer hospital but really just find out the number to the head and neck clinic and call. They can answer your question and likely book the appointment. Sometimes we walk around with blinders on. Because we don't really want to know or face something. There are times this is okay for a bit - but mostly and particularly with cancer it can be deadly. If nothing else the stress itself is unhealthy. If you do get a bad answer (a positive for cancer) the reality is you caught it and you can be treated. No one wants to face that, but once you know you can do something about it. But as long as you don't precious time is being wasted. Really, right now your in a state of paralysis, knowing will do one of two things - either let you act on it... Or let you get on with your life. It's terrifying, but you really do need to find out what is going on. Hugs!

Hi, Penny -
I am glad to see you will be contacting Moore's - the are an NCI Designated Center. Call them up and, as Cheryl suggests, and the feeling of paralysis will recede and you will have more control over what is going on.

Best wishes from a former California girl!

Again I thank you all for your responses, they have been very helpful. This is the last time I will bug you all before I get to an oral surgeon or ENT who can help me get a diagnosis.

I was reading through my medical journal, which I kept for a month or two back when all of my symptoms started, and I was taking pretty thorough notes. I mentioned a lump I felt on my throat. I had a GP look at it and she massaged it thoroughly and concluded I had a more pronounced adam's apple. I didn't see any reason to disagree at the time as I didn't know if it had always been there. This was around the time I found the mouth sore.

Anyhow, my point is that I am having more throat symptoms now, and I had forgotten I raised that concern previously. Tonight I feel as though someone has their hands wrapped around my neck. Additionally my face feels weird, like the skin on it is tingling at times.

I don't really know what my point is, I suppose it is that the more I think about all of this, the more I realize I should have pushed harder several months ago. I didn't know I needed to. I know everyone's motto here is that it isn't cancer until a biopsy says it is, but I'm coming to a point where it would literally have to be a combination of some pretty weird stuff to be anything else. Believe me, I've looked for other stuff, extensively.

At any rate, thanks for the kind wishes, advice, and warm thoughts. I will let you know when I know.

Don't beat yourself up over could haves and should haves - it serves no purpose. I should hav pushed my first ENT - too. I should have had him palpate my tongue further and suggested he go deeper when biopsying. Had I done that I would have lost less of my tongue. But I trusted he was an expert. not so much apparently - that's why im super diligent with my care now. Bottom line - you have an opportunity to deal with it now. I personally think its not cancer. The lesion may be - but based on the fact that you have many symptoms and bilateral involvement (it's kinda diffuse and all over) it sounds to me like something else - maybe some kind of systemic infection? Inflammation? Allergy? Lymph nodes do become involved but it often starts out in a particular area just under you chin and closer to your ear and usually on one side. If there are many nodes involved generally the primary cancer is quite large - not all the time (there is such a thing as an occult primary - not visible - or unknown)- but often. Have you been scoped? The dr takes a scope and goes through your nose or mouth and down your throat? You may have a lesion in your mouth but maybe - based on what your saying with the swallowing and strangling feeling (tightness) maybe you have a base of tongue tumor (HPV related) or a tonsilary cancer (also HPV related) with this type of cancer there can be more throat and neck symptomology. So have your dr scope you to see if you're clear. But honestly it sounds like something else. Try not to freak out sometimes the stress alone causes us to exhibit more symptoms. everyone is different there are certain things drs look for and things that we as a group know and see collectively, but nothing is definitive because not everyone is the norm... What I do know is that both physically or mentally you need an answer.

Make the appointment and good luck.

Penny,

I want to add when I went to Moffitt Cancer Center I told my surgeon I felt like something is stuck in my throat, I think I have throat cancer too. He assured me with all the CT Scans it's not throat cancer it's acid reflux and that's one of the symptoms. I started taking Nexium but that is so expensive I switched to Prilosec over the counter 40mg. That did the trick.

You might want to ask if you have acid reflux.

Take care,
Connie