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Re: Old Timer Checking In JamesD 06-17-2024 02:17 AM
Wondering that myself.Christine was a key part of my journey and Brian’s relationship with the OSU put me in touch with this group.
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Symptoms and Diagnosis Jump to new posts
Re: Several Years After Dysplastic Leukoplakia: sore ChrisCQ 06-12-2024 12:02 AM
So my ENT Surgeon happily obliged when I asked about a surgeon feeling the lymph nodes in the armpit region. Despite not being his region, I just said a surgeons sense of feel was what I was looking for. He felt the same thing my PCP did, lymph nodes or lipomas. I did the ultrasound/mammogram my PCP ordered. That came back normal, a few lymph nodes visualized but normal sized and no calcification or anything suspicious looking I guess. "Hetergenously Dense Tissue that can hide small tumors" was also referenced. So my ENT Surgeon could feel the cluster of lumps and a few of the other bumps, and ordered a CT.

Previously his PA had responded to my concerns saying a PET/CT 3 months after would be agreeable to the surgeon, but during my April appointment as I asked about it and if it was medically warranted, he mentioned my situation likely would face an uphill battle with prior approval for PET/CT at this point.

CT of Chest (to include armpit region) came back unremarkable with the exception of a tiny granuloma in the lingual lung (I guess the part of the lung that is shaped like a tongue!). As I was processing the lingual lung thing, having had all this work up for tongue cancer, it was a bit of a mind trip for me figuring that out.

The surgeon said the jaw pain could just be sleeping on my face weird, chewing odd, grinding teeth in sleep. It went away, and has not returned. So I think that was just an aging fluke or a "slept on it wrong" kind of deal.

Had two tiny blood blisters near my excision site, took pictures and sent them half panicked to the Surgeon...and of course 2 days later they were gone. Probably some minor tongue trauma that I didn't remember or something.

Starting Yesterday (6/10/2024), I think, as I was driving I was just feeling my neck, and jaw region for lymph nodes. Got to the left side (my tongue tumor was on the right, and a tiny, microinvasive SCC when caught), about midway up the neck, between the adams apple and that long strappy muscle that goes up both sides of your neck, there was a pretty sharp pain on deep palpation.

Similar to the feeling if you pull a neck muscle, but it is not the muscle, I can push on the muscle and tendons and nothing, turn my head in every direction, nothing. Just pressing into the neck. I can't feel any lumps or anything at all. Now after feeling it for a day, perhaps I am further irritating a randomly slightly irritated nerve or something, but now it does hurt a bit to move my head around.

Also minor pain when swallowing with my head turned to the right.

I figured I'll give this symptom a few days and try not to touch it to provoke a flare up, maybe take some OTC Ibuprofen or something.

I'll see the surgeon again in like 8 weeks I think, and I'll mention to him then. I am just trying to be vigillant and do my due dilligence, without inundating the doctors offices with more email.

I'm still not convinced the armpit lymph nodes aren't something to keep vigilant awareness of, despite the CT, Ultrasound, and Mamogram showing nothing of concern. It's those tiny tumors that don't show up well, when you want to catch it, and that's kind of my mindset.

So far I think I've been pretty reasonable without delving too far into hypochondria land.

Maybe I am just at the age where random body parts just start feeling like you were screaming your head off at a crazy concert all night at a crazy raging party, but in reality did nothing different than you had in the past 1,000 days. That and the fatigue as if I was out all night on a bender...and really just got the same sleep I always did.

At this point I think I'll ask the Surgeon about just paying out of pocket for a PET/CT if insurance is going be an obstacle.

Oh, the only other thing is still have some tiny white patches around the excision site. One I think is just where a suture was, and I can understand the tissue scarring over the hole as the suture is dissolved or something. The other one is far enough away, it is a bit concerning. The Surgeon will of course look at everything each visit.

The Wicham's Straie in the retromolar trigone area on both sides with some patchy leukoplakia hasn't been biopsied. I guess it is pretty faint, and uncertain if that is what it is. I had noticed it and asked about it, and when he did the surgery he looked at it closely and made those notes. On the right side, way down low where it is nigh impossible to see, there is a cluster of a few whiter oval shaped spots, probably half the size of a grain of rice each. Speckle marks, just a bit odd to the laymans eye.

Oh had my first dental visit last month with the dentist (not the one who originally discovered the leukoplakia and inculcated this seriousness with which I address this issue, she was great, was like you DO NOT mess around with unhealing mouth lesions.) who had said when I stoped for an urgent visit before my 2nd biopsy, to ensure it wasn't just rub marks on my tongue from a lose tooth or whatever, that the red spot that was sore on my tongue was "oh, that's nothing. You have nothing to worry about." had the pleasure of saying to the dental hygenist when she asked if there were any changes to my medical history, I was like yes, you remember that spot on my tongue, biopsy came back as OSCC. The dentist was sympathetic and decent, so I said nothing like "you should probably stop telling your dental patients to not worry about sore spots on their tongues..." as I had envisioned if she was flippant on this visit.

I really want to find the originally dentist from years ago, she left the practice, and I don't know if she married and changed names or what, but I really wanted to thank her for instilling in my the vigilance so that we did in fact catch the OSCC at the earliest possible point (unless you want to put Carcinoma In-Situ, regardless my tumor was a tiny grade 1 when it was excised). She did an excellent job "doctoring"--that is teaching me, anything that doesn't heal in 2 weeks...BIOPSY. And now that you have dysplasia confirmed in biopsy, close follow up for life with an oral cancer expert. Now with an actual cancer, all the more close vigilance.

So that's that for now.

Thank you Nels, I didn't have any thing done besides a tiny partial glossectomy, so I can't really think I am in the same boat as you folks who have had major surgeries and neck dissections and all that recovery with scar tissue and all that.

Peace, Out,

CQ
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