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

Cancerous nodes are firm, fixated in place (you can't push them around easily) and painless. The only way to know what is causing yours to swell is to do a CBC blood count looking for increases white cells which would indicate that your body is fighting an infection (not cancer), and if these nodes fit the description above, to do a fine needle biopsy of a few of them to sample cells from inside them for a histopathology look to see if there are cancer cells within them.

It was very common, especially 10 years ago, but even at smaller less experienced institutions today, to have what we term occult oral environments or unknown primaries. Today that is less so, especially at the big cancer institutions, as we know that tonsillar cancers can have a primary as small as 2mm (not cm), and move directly south into the cervical nodes without producing an oral lesion that is visible in early stages. It was only after a Hopkins study which did prophylactic tonsillectomies on all these people with positive nodes but occult oral environments, that we discovered this.

The lymphoid tissues on the base of the tongue and in the tonsil are different than other areas of the mouth that have an cellular architecture which consists of; a basement membrane, basal cells, (which is where all cancers start), and then layers of epithelium all the way to the surface. Tobacco carcinogenisis has always produced visible lesions because of the normal cell growth patterns from basal to upper epi cells. With no basement membrane, a really small primary can spin off daughter cells into the normal lymph drainage pathways from the tonsils, and directly into the nodes, making the process of metastasis much faster, and leaving the oral environment occult of visible lesions until very late development. These used to be called unknown primaries, because even a CT scan might miss them, and there was nothing on the surface to see.

When I was put under to find my Primary, my doc at Moffitt told me he thought it was either BOT or my tonsils based upon a visual inspection. I went to sleep thinking I was going to have my tonsils taken out only to wake up being told that he found it at the BOT and it was so small he thought he got it all with the biopsy. He stopped and left my tonsils where they should be. That was the only invasion I would undergo which was fine with me.

My tonsils were removed when I was 12 and they didn't grow back so mine wasn't in the tonsil. I suspect it was on the back of my throat since I had a faulty cigarrette burn the back of my throat. I was at HUP, not exactly a small, inexperienced institution. Biospies were taken all over the inside of my mouth looking for the primary but nothing was found. I however agree there seem to be less unknown primaries these days.

Take care,
Eileen

Brian,

Thank you for a very lucid explanation on the "unknown primary"...it is a question that I have always had since Bill was diagnosed. In our case, his BOT/tonsilar tumor was very advanced and visible with no nodal involvement (at least that could be dx'd) so I was always perplexed by someone who's first symptom was an enlarged node. How could there be cancerous nodes and no sign of cancer elsewhere???

Now, I have the answer!

Thanks again for educating us,

Deb

Just to head off the next obvious question.... When kids (or adults with a little more difficulty) have their tonsils removed, they never get 100% of the lymphoid tissue, even if they get the whole tonsil, which often will grow back to some extent. HPV16 is very attracted to that lymphoid tissue, and I have talked to patients that had their tonsils removed as kids, and still developed a tonsillar cancer later in life. So seeing that all kids had their tonsils out as a way to head this off, is an idea that would not work.

I think it is weird how some people can feel their lymph nodes enlarged. Myself and my doctors couldn't feel it, but they saw it on the scans. Very strange!

I am one of the "Unknowns' also. I knew I had OC before the Drs finally check it and listened to me. I had never heard of this or knew it was OC until after the 1st Biopsy.

I've been following this thread with interest as I'm one of the unknown primary people. Noted particularly your comment about 10 years ago/smaller institutions, Brian. All of my doctors at St. Johns in Santa Monica, including my UCLA professor MO, told me that occult primaries weren't all that uncommon. And that - and this seems counterintuitive but there you have it - I could expect to do better with the unknown status than if the source of the cancer were found. Before my triple endoscopy my ENT told me that he didn't expect to find anything, and in fact he didn't.

I expect it's all a question of statistics. I'll be having another PET/CT in November and I'll be sure and ask my RO about this issue again.

Interestingly, when I first found a large lump under my jawline it was biopsied negative. It was only after my first surgery to remove what I'd been told was a branchial cleft cyst that the SCC was discovered. In fact the ENT who did the FNA (not the one who finally operated on me) told me that the fact that he got a syringeful of fluid from the initial mass was a good sign that it was in fact a cyst. (believe I've written about this before) It was all very puzzling to me at the time!

Continued best to you, l&l.
David 2

I also had an unknown primary.

I was told for OC, it is very rare these days not to find the primary because of the way OC moves from the Primary location to specific lymph nodes locations. They can usually map back from the nodes to the primary site.

There is a theory that an unknown oropharynx primary may no-longer exist. One of my RO's mentioned that the immune system may detect metastasis from a micro-tumor primary barely beyond in-situ and eliminate it.

I came across a MD Anderson study that drew a similar assumption, but my ENT thinks there was one but they missed it.

Another ENT at our NIH CCC said the path-lab may have screwed up on the "wide" Tonsillectomy specimen tissues and missed it!

My unknown location could not be accurately mapped from the nodes, so they had to treat several even larger "suspect primary" areas.

Due to multiple larger areas they elected to use TomoTherapy.
Now days all our Cancer Center have real time scanning Arc Therapy (Varian, Novalis RapidArc, Cyberknife, Tomo), but back then San Diego only had one realtime CTrue scanning TomoTherapy system.

Also the tonsillectomy+++ was brutal - they took everything! But, it is fine now and apparently I never snore at all anymore!

NCCN Guideline recommend these "wide" tonsillectomies for unknown primaries, but they don't mention they also cure snoring.

Hi. I'm new. Started smoking when I was 12. First biopsy of leukplakia when I was 20 and 4 more times through my 20's and 30's. No one ever told me that they were precancerous. Dx when I was 41 SSC. free flap surg.,neck dissection and 35 rad. Just finished treatments in August. Feeling GREAT now. But definitley be your own advocate. If you don't feel satisfied keep pushing. I quit smoking when I was 32 by the way...

Hi Brian, Lymph node primaries can result from lymphoma which sometimes explains why there is a presentation in a cervical lymph node with no other tumor present. When excisional BX is done, then pathology reveals the type of cells present. In SCC-HN it would be squamous cells, in lymphoma, it would be lymphoma cells; other types of cancer, that specific type of cancer cell would be found in the lymph node. However, a SCC does not start in a lymph node--as live&love might be thinking. It must come from a part of the body lined with squamous epithelia. Lymph nodes are comprised of lymph tissue. I am not a medical professional, but I found out this information from doctors and from doing research on-line.

As a 25 year survivor of non Hodgkin's lymphoma, (likely a cascade event form exposure to defoliants) I can tell you that there are multiple other symptoms besides an enlarged painless node that accompany lymphatic cancers. You know well before you have some surface nodal presentation (most of them are buried deep within you) that you are genuinely sick. Since this forum is and oral cancer forum I won't go through the list.

What we are talking about here are oral cancers, and specifically why in some people who have SCC in their lymph nodes after a fine needle aspiration and biopsy, (obviously from the mouth or throat where squamous cells reside), have no visual presentation of the disease in their mouths that we would normally see in tobacco oral carcinogenisis. No one has said here that a lymph node is ever a primary in oral cancers, and for that matter in most other cancers, as it is a central collection point of metastasis - your lymphatic system is part of your immune system trying to clear things from your body ranging from the detritus of infections to cancer.

Breast cancer patients have regional spread to lymph node under their arm pits and in their thorax, testicular and prostate cancer patients have spread to the nodes in the groin etc., because the lymph system is trying to do it's job. So if you go back and read the original posting, the statement was in relation to the question was why oral cancers can sometimes be occult and show up as a cervical node first find even though that is never the primary; not the multiple reasons a lymph node might be cancerous.

By the by, a lymph dissection and biopsy for a suspect lymphoma cancer will always find lymphoid cells in the node, as that is what it is made from - just in lymphoma some of those cells which are there will have the cellular change that make then cancerous lymph cells vs. normal lymph cells. This is a cascade of a disease that is primarily composed of malignant lymphocytes. Lymphocytes are a normally occurring part of the white blood cell series, all part of your immune defensive system.

[quote=Brian Hill]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. [/quote]

Brian-I am sorry, but you misread my post. I was only correcting the statement you made as quoted above. And, you are wrong about a neck presentation being a late manifestation of lymphoma. It is precisely what my husband's oncologist and ENT suspected prior to his excisional biopsy. By the way, FNA's routinely give false negatives for many types of cells and are often inadequate in dianosing lymphoma as well as SSC.

In addition, someone in fact DID mention that SCC may have started in a lymph node. Please refer to live&love's question in the first post on this thread where she asks if it could have started in a lymph node.

I am sorry if I have offended you.

No offense taken . We are just trying to get the best information out possible. I suspect I should have said (never thought someone would relate the comment to something other than oral cancer on an oral cancer board) that in oral cancers, nodes are never the primary. In 12 years I have never read about one being so in any peer review journal, nor heard of one here at OCF, or on the many cancer programs I lecture on routinely. As to the lymphoma, respectfully, having been there personally and having my abdomen swell and be the site of the main early manifestations of it, I think I have some knowledge here that is valid.

Those here for the last decade have all discussed for years the value, or lack thereof of FNA's so we all know that they have a less than 100% accuracy rate. I said for people that had them with a positive finding....They miss things because of the random nature of the punctures, but positive findings when they occur in the aspirate and in subsequent histopathology, are not a shortcoming of FNA's and in that case they are accurate as a diagnostic procedure.

There is never any issue asking for further explanation of something or suggesting that something was misstated. The worst thing that can happen on these boards is for us to put out bad information that might hurt someone. SO as a final clarification - an enlarged neck node can be a sign of lymphoma, BUT NOT IF THE ASPIRATION TURNS UP SCC IN IT, which is what we are talking about here. The answer to live and loves question is correct, oral cancer doesn't start in a cervical node.

I have also been told by 3 doctors, if there is SCC found in lymph nodes, that there is always going to be a primary in the mouth or "throat" area, as they are squamous cells, and that's why it is squamous cell carcinoma.

Also with lymphoma, I had a friend that just went through that, and she actually didn't have any lymph nodes in her neck involved, she had a tumor in her chest, which was odd, cuz it wasn't near where your lymph nodes are "supposed to be". They are usually found near your armpits or in your neck and hers was in the center of her chest, well slightly off center, but no where near the axillary lymph nodes.

I have since talked to 3 docs (1 ent, 1 oral surgeon and 1 oncologist), and they say if SCC is found in the lymph nodes, they better be looking for the primary in the oral cavity or throat, as they have never heard of a primary of oral cancer in0the lymph nodes, especially when it is SCC in their combined 70 years of treating oral cancer, and head and neck cancers.

You do understand that you can have SCC in your mouth and it can not be visible, ie. occult, meaning buried in the tissues of the tonsil perhaps, looking totally normal (absent)to examiners. At that size it can also be missed by scanning technologies that typically look at slices that are about 5mm between each view. So the unknown primary issue, many times is just occult, not unknown. The Hopkins experience on consecutive patients with positive cervical nodes and occult oral environments found just this. 70% of them had a small 2mm primary buried deep in the tonsil when those normal looking tonsils were excised and biopsied. This is occult, not absent. And there is no argument that SCC has to originate from squamous tissues, and the closest ones to the neck are in the mouth, that is a forgone conclusion. I don't get what people don't get about all this in this post.

Sorry, but I'm out of this conversation.