Well I did see my Cancer ENT Surgeon 11/19/2025 for my regularly scheduled interval follow up exams.

We did look at my PET/CT images, as I had concern about the right side of my neck showing some increased FDG uptake, and noted the pain I had between the corner of my jaw running down the right side of my neck to my collar bone. One of the lymph nodes on the PET/CT did look like it was kind of on that line beneath the collarbone.

Hopefully I did not shoot myself in the foot by saying perhaps my sense of pain is psycho-somatic (as I sit here typing this with probably a 2 or 3 right sided neck muscle pain, like when you've strained your neck, but no recollection of any traumatic, or repettive motion kind of thing, besides perhaps swiveling my head to check my mirrors driving commercial sized trucks and snow plows, but why a right side bias is unclear to me), as I was looking at the scans.

PET/CT shows several FDG avid right axillary lymph nodes with one SUV max of 5 point something, radiologist deemed of indterminate nature. Did a CT guided core needle and fine needle aspiration (FNA) biopsy that was on the first attempt non-diagnostic. Repeat needle biopsy was non-diagnostic on the the FNA, as it was again, almost entirely blood. The Core needle had actually lymph tissue with no evidence of cancer found, but a disclaimer that close clinical and radialogic correlation was crucial, as it may not be representative of the entire node.

The repeat needle biopsy at the time of this 11/19 appointment had already been ordered by the breast surgeon, but had not yet been done.

We have discussed the new leukoplakia for probably over a year now, and while I could feel nothing bump wise until about 6 months ago, and then it would come and go. My ENT surgeon, thus far, has been unable to feel the tiny bump I can now consistently find and feel.

He had previously offered an in clinic biopsy of the white lesion, but this time when I was asking him to examine this spot I am feeling, he could not feel it, and was kind of missing it, so he watched as I stuffed my finger in my mouth, and was kind of surprised how deep I was going, (kind of a LOL thing I guess). I don't think I gagged, but he was concerned about making me gag. He said where I was going was too deep to near the base of tongue to do an in clinic biopsy.

He said that he would need to do another general anesthesia direct laryngoscopy to biopsy that area (if I recall correctly, I was a tad shocked he was offering up another general anesthesia/minor surgical procedure as previously we had discussed just do quick local anesthesia in clinic excisional biopsy, nice and simple for him to do.

So I was kind of caught mentally off guard, but had several concerns I couldn't think to verbalize quick enough.

I did kind of get some of my concerns off my chest, about my actual cancerous lesion being nigh impossible for the oral surgeon to even tell what to biopsy, as it was so very subtle. In the end that oral surgeon could detect the bump with the wooden end of a cotton swab by rubbing it across the surface of the tongue. It was not much bigger than the size of that wooden cotton swab end, and it was actually cancer.

One of my concerns is that if my current ENT cancer surgeon can't feel what I am feeling how would he even know what to remove. Maybe it is that once I am on the table unconscious he'd be more able to deeply palpate all areas of the tongue without worrying about making me toss my cookies with a gag reflex. The white patchy area, as far as I can see, doesn't quite match the bump that feels deeper and further back. Still very very small. I can just consistently find it. It is tender upon palpating it. It does not remain sore after I irritate it by feeling it agressively like my original tongue lesion that happened to be cancerous EVENTUALLY did. It was after the oral surgeon tweaked it for a bit, and it remained sore consistently for a couple weeks, that I was determined to ask for it to be biopsied.

I'd hate to go through all that only for him to scope me and not find anything to biopsy. I don't think it was because he had a high suspicion of finding anything base of tongue on the laryngoscopy, as it was his response to me asking about the spot about 1cm below, and maybe to 1 cm further back. So he wasn't strongly encouraging me to schedule that, just that if I felt this new bump was growing or progressing that's how he'd want to do it.

I said as soon as you can feel where it is, then, for sure, I'd want you to biopsy it.

So I see him again 2/18/2026 and if anything develops or changes, call to make an earlier visit and schedule the general anesthesia procedure is the plan.

I did notice that area behind lower molars, near the corner of the jawbone, retromolar trigone, I guess, an area where he had noted some general white patchy leukoplakia more consistent with Wickham Striae (sp?), had glowed with a auto-phosphersence (no dyes or anything) kind of effect when I shined a black light on it. That is a change. A nurse called me back asking me to clarify, I though I did, but the notes she sent to the NP was that I was concerned with my teeth showing up on the black light. SMH.

The area of oral mucosa behind the molars, kind of like the insides of your cheeks but further back. I don't think that nurse was specific to the oral cancer office. I included the pictures.

Apparently that's not a concern.

So now as I sit here and my right side of my neck is sore, I've mentioned that briefly, but it is getting increasingly annoying, I'm on the fence of sending out YET ANOTHER patient gateway message to his team.

Striking the balance between early intervention while not crying wolf at every little thing, it is becoming an increasingly difficult balance.

I'll bite my tongue, as it were, for now, and wait to see if the neck pain begins to resolve. I can't find any bumps or lumps in my neck. Turning my head all the way left of right does aggravate it. Maybe just general old age and inflammation. If it continues to worsen or just does not go way after a couple weeks I'll send another message and see if it is concerning to him.

It's kind of crazy with micro-metastasis and micro-invasive small stage 1 tumors, anything sub-centimeter is not likely to show up on PET/CT. My original cancer likely would not have show up on a PET/CT.

Hopefully soon they'll advance PET/CT technology to be 10 or 100 times more sensitive/accurate for tiny tumors.

Thankful for what technology and medicine we do have, hopeful for continued advances.