I’d like to add that it is critical to get the biopsy at a CCC. My local ENT did it (of a swollen lymph node that was miscategorized as a cyst) 2/2017 and it came back normal. When the lymph node was removed a month later (per my request, they wanted to delay) the pathology came back with P16+ SCC.

Several biopsies were performed and after TransOralRoboticSurgery (TORS) a 2mm tumor in the back of my tongue (vallecula) was discovered. I had 30 days of radiation as treatment that ended in July 2017 and currently have no evidence of disease.

Trust your instincts and get the best practitioners possible.

For what it is worth, I don’t have HPV, no other biopsy samples (11 out of 12) tested positive for HPV or P16, and my life partner does not have HPV.

P16+ Is correlated to HPV greater than 75% of the time but to say it is definitely HPV requires separate testing.

Wishing you the best,
Stef

You’ve had good advise so far! As mentioned, you can ask for a fine needle aspirational biopsy under ultra sound guidance at a CCC or CC, usually done by a pathologist was my experience, although at this point, I’m not sure if any would agree, but it’s minimaly invasive. Usually that’s done first, like mine, which showed positivity, and then a triple scope under sedation found my primary. None are 100% accurate, but I’m sure fairly close between them all. As my cancer was found in the tonsils, if not, it wouid have been an unknown primary since cancer was proven in the lymlh node. A primary can be difficult to find in the tonsil crypts or die off at the primary when it metastasizes to the lymph nodes, taking all the nutrients with it, but maybe a small residual of dead cells are left behind, but I’m not completely sure though. Sometimes it’s the other way around that cancer is found in the primary, and not the lymph nodes.

It’s correct that it’s not cancer until proven otherwise, and that’s by biopsy. There are so many other oral conditions it can be other than cancer.

Good luck!

So, quick question. I got a FNA biopsy (guided by ultrasound since the lymph nodes are relatively small) scheduled for this week. The reason is in addition to the two lymph nodes on my jawline on the left side of my face, another one popped up on the right side of my neck. While the two on the left side of my face are easily movable, squishy, and bean-shaped, the one on the right side of my neck is very hard and very round. It is roughly 1 cm in diameter. My question is in regards to the new lymph node, it is located very close to the of the next. Really at the base of my neck and much closer to my collarbone/shoulder than my ear. Is this a worrisome location in regards to OC? It seems most people's lumps as it relates to HPV OC are higher up on the neck. Somewhere between the trachea and the tongue and this new lump is pretty far below the trachea/adam's apple area.

Thanks in advance. Fingers crossed that the ultrasound guided FNA comes back clear this week.

WorriedSick101,

Anything is possible, probable, maybe not, but the only way to be certain, minus a surgical biopsy, is an FNAB. The cervical neck has 7 nodal levels, and certain head and neck cancers USUALLY metastasize to specific nodal levels first, and usually higher in the lymph chain, like mine were in nodal levels ll & lll for Oropharynx Cancer metasteses, and Oral Cancer metasteses is usually in level l. It was years later, for a recurrence, that I had lymph node level V, not too common, but that’s the way the lymph chain usually flows, downward, towards the lungs, but again, cancer can go anywhere!

HPV related head and neck cancer is mainly in the Oropharynx, and no other location, majority of times. Even if elsewhere, it may be a metasteses from the Oropharynx primary.

Good luck with your FNAB, hope everything will be ok, and leave those lymph nodes alone, like I was told!

Update 5/8/18:

Had an ultrasound last Friday. Was told by the imaging department I needed a "base ultrasound" prior to an ultrasound guided FNAB to determine what, if anything, they would biopsy. While the two small nodes/glands are still swollen on my jaw, the radiologist report did not see anything to biopsy. The report suggested a CT scan if my ENT was still concerned. Unfortunately, I have not been able to talk to my ENT. I suspect he will take the radiologists recommendation and not do the biopsy.

At this point, I am a bit of a loss. I still have symptoms. I still have swollen glands. It seems I can't get them to biopsy the glands and conclusively say whether they are malignant or just reacting to viral or bacterial causes. While I am concerned, I have now had two nasendoscopys and an ultrasound, both of which came back clear. I have none of the tell-tale signs of anything malignant (large lump in neck or obvious sore in mouth). However, I still have two small swollen glands which haven't changed for 2 months (only on left side), difficulty swallowing (only on left side), and a general feeling of being unwell in my mouth.

Is there anything else I should/could do to conclusively rule out OC? Having done admittedly too much reading, I understand OC can be a tricky diagnosis. While I take some comfort in the diagnostic testing not revealing anything concerning, my symptoms continue to persist. So I am left with no biopsy to conclusively rule out OC and yet no diagnosis of any other cause of these symptoms. The uncertainty is obviously the worst part.

Thanks again for all the help on this forum. I admire each and every one of you for your courage and kindness.

WorriedSick101,

I’ve never had a “base ultrasound” with my ultrasound guided FNAB, and had about 8 of them, but all mine were done by the pathologist, not radiologist, and not even by my ENT. The pathologist more than likely saw the nodes to biopsy on imaging.

At this point, see what your ENT says, and address your concerns. You can always get a second opinion, if you want!

Good luck!