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...