I would first like to say congratulations and best wishes to every one of you who have endured your own personal experiences. You are all a great support system for one another. I have been reading this site religiously and have finally decided to join.
I understand that this is not meant for diagnosis purposes; however, I know that advice/info, support etc is given unconditionally so therefore, i would like to share my story.
I am in my early 20s and about 5 mos ago, was diagnosed with TMJ due to cheek pain, jaw pain, ringing/congestion of ears. However, at the time, I had some 'palpable' lymph nodes on the affected side (ENT and doc did not seem concerned). After all the doc visits, I slowly noticed certain changes in my tonsillar tissue (same side as affected side). I have been disregarding it as regular 'tonsillar crypts' but in fact, I may just be in denial. I am terrified of the unknown and especially after recent news in rising cases of OC, I am truly scared. I am going for professional advice this week and just so scared. Could it be that it had started off in the lymph nodes and now I am finally seeing changes in the tissue? If there are certain 'precursors' to lesions or changes, shouldn't it have been caught by both ENT and dentist?
I just wanted to hear stories of those who "may" have been similar to mine or any suggestions/advice.
Thank you for taking the time to read this.

my dentist and first oral surgeon kept saying i couldn't have cancer because I was too young and that I was just chewing on my tongue.

I hope you don't have oc and that it just is tmj and inflamed lymph nodes doesn't always mean cancer. They could be infected or just irritated.

Glad you are going for professional check up and hoping that you get all clear that it's not oc.

Welcome aboard our Little Ship lost at sea. I know it is hard but try to think of other good things in your life until you find out from the Drs just what the diagnosis is for you. Like David and others say, It ain't cancer until it is biopsied and confirmed that it is. You have my best in thoughts and prayers.

Welcome, and I second and third the comments above. Get it checked out and keep a positive outlooks. There are plenty of things this could be that aren't cancer!

Keep us posted and ask any and all questions that come to mind.

David 2

Wellcome! This is a great place to be. I hope you don't have to stick around. But we are here for you if you do. I agree with the others, great job bringing a specialist in. I will never again assume that they know best. Ask questtions, get second opinions and don't take no for an answer if you think they are overlooking something important.

Thanks everyone for your kind thoughts and words. Will def. keep posted. take care!

Lymph nodes are part of your immune system, and a primary pathway for your body to eliminate toxins and other waste byproducts of infections and the like. They are a place that we find cancer metastasizing to, but they are never the location of a primary cancer.

Thanks for your response Brian. My question is however, a lot of patients first noticed "lumps in neck" and it was then found out later that the primary was in other location of the mouth. So this is what concerns me. I have had the lymph nodes since beginning of the year (prior to the change I see on the tonsil), they have not gotten bigger/firmer etc...just stayed about smaller than pea sized. It's odd to me only one side of neck has the 'noticeable' nodes. Perhaps this is just coincidence...
I also don't know what people refer to when they mean "lumps in neck"...how big are they usually?
Thanks again for your response!

When I first discovered what led to me being diagnosed with cancer was a painless lump in my neck. Initially I ignored it and a month later I asked my wife to take a look and BAM!! I was on a fast track to discovery. I didn't think it (which turned out to be 2 nodes) looked or felt big but my wife seeing it for the first time screamed in her always calming manner "My God you've got golf balls in there!" From memory I don't think either were greater than 2 cm's.

From my experience with this cancer it is quite common for those of us later diagnosed with HPV positive SCC to first notice the swollen nodes which then later leads to the discovery of our Primary.

And for a very few of us, they never find the primary. We only have the lump in the neck. I'm not certain I would rely on my GP to diagnose the lump in my neck. Did the doctor at the cancer center check your neck at all? I think I'd go back to him or an ENT to get this lump checked out.

Take care,
Eileen