| | Joined: Nov 2019 Posts: 71 Likes: 7 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Nov 2019 Posts: 71 Likes: 7 | Howdy Folks,
Had my first PET/CT last month. Head and neck wise it looks decent, some uptake, but I guess that's common and usually just reactive (infectious / inflammatory) response from oral cavity and all the germs, and radiologist deemed "likely reactive".
The armpit lymph nodes are concerning to me.
Hoping to get scheduled for a fine needle biopsy here soon (would kind of like them excised out, but I guess that's a complicated surgery with significant risks and likely long term effects...).
With my micro invasive and small tumor no neck dissection or sentinel lymph nodes were taken.
Had a CT a year before, but this was my first PET.
Only mention of an actual spread from tongue eventually to armpit lymph nodes here on the forums comes from, Rest in Peace, Cindy721. That was like 4 years after her neck dissection and treatments, after she had a recurrence from much more advanced disease.
My concerns mostly lie with a second primary cancer.
Radiology at the CCC was supposed to be looking at the images to determine if a fine needle biopsy would be a good option. Has been a couple weeks and have not heard, so just "re-pinged" them tonight.
Very few instances of this kind of thing in the literature that I could find too.
Could just be reactive to a Vaccine a month prior, or a stupid yellow jacket sting.
I am itching to just get them biopsied.
Reading from Cindy's (RIP) accounts, it sounds like she had several experiences with false negatives on the fine needle aspirations, and insisted on excisional her last go around with them.
From what I've read on here, some folks are dead set against them, others seems to think when done well they are a reasonable initial step.
Has anyone experiences something similar? Or have any suggestions?
Thank you,
Chris
---------------------------------------------------------------------------------------------------------- HEAD AND NECK: Mild mucosal thickening in bilateral maxillary sinuses. Scattered subcentimeter bilateral cervical lymph nodes in level IB, II and III with mild FDG uptake, likely reactive.
CHEST: Lymph Nodes: Several FDG avid right axillary lymph nodes, for example: * 10 x 10 mm right axilla level 3 lymph node with SUV max 3.5 on image 133 * 15 x 7 mm right axilla level 2 lymph node with SUV max 5.7 on image 139
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11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue 1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
| | | | | Joined: Nov 2019 Posts: 71 Likes: 7 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Nov 2019 Posts: 71 Likes: 7 | Interventional Radiology Imagery Guided Needly Biopsy Scheduled for Thu 10/30.
Here is hoping they are able to get good tissue samples and a definitive answer, not just a vague, "likely reactive". Of course I'd rather have the likely reactive conclusion. I've just heard of quite a few false negatives on the needle biopsies only for them to find things later.
Such is the nature of the beast, one step at a time.
Hopefully they can find them and get to them ok.
Will update once I get results.
Happy Halloween!
11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue 1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
| | | | | Joined: Nov 2019 Posts: 71 Likes: 7 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Nov 2019 Posts: 71 Likes: 7 | Well the CT guided Fine Needle and Core Needle Biopsies of my Level 2 Right Axillary lymph node that was PET FDG avid (SUV 5.4 I think) was done.
I thought it went great. Cytotechnologist came down and looked at the FNA aspiration slides in near real time (with the introducer needle still in me, and still laying on the CT table).
Turns out the FNA needle got mostly all blood, some lymph tissue, but insufficient for characterization.
Core needle got all fibrous fatty tissue, not lymph tissue, also a non-starter for pathology.
So a bit of a set back, with more waiting. Its something like a 90% chance the PET avid lymph node is just reactive in my situation (maybe 99%), but would be nice to check that box off definitively and move on one way or another.
I reached back out to my regular ENT Oncology team to see if they need to re-order another attempt, or if Interventional Radiology would automatically call me to reschedule a second attempt.
I said I'd be happy for a 2nd attempt or an excisional biopsy if a surgeon thinks it's a good candidate all things considered.
Will update once there is some more progress/decisions.
11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue 1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
| | | | | Joined: Nov 2019 Posts: 71 Likes: 7 Supporting Member (50+ posts) | | Supporting Member (50+ posts) Joined: Nov 2019 Posts: 71 Likes: 7 | Well that experience was a bit confusing.
I thought a non-diagnostic needle biopsy attempt would automatically trigger another needle biopsy attempt appointment.
Once I contacted my surgeons office after waiting a week or so after the non-diagnostic pathology report was released, for them to call me and say "hey, they didn't get the required tissue we need to do it again", a nurse practitioner for my surgeon called me back after I reached out and inquired about a repeat needle biopsy. She seemingly balked, said something about not wanting to put me through that again, and I replied, to deaf ears, it was not worse than a minor bee sting, I'd be happy to do it again to get results. She then said it would be best to follow up with my GP. Her notes indicated that we had agreed, I was like not really, I was asking for a repeat order or whatever if that is the protocol. Nurse practitioner said that if it was a neck lymph node my oncology ENT surgeon would just do an excisional biopsy to get a certain pathology result, but the armpit was outside of his domain.
Contacted my GP and he was like no idea why they'd refer you back to me (perhaps they did not think the PET/CT FDG avid lymph node was concerning enough, or too small a target for an accurate lymph node repeat needle, but they said none of that, so I have no idea).
MY GP did encourage me to keep working it up.
So I called a number at the breast clinic offices of the same CCC and they set me up with a a breast cancer surgeon the next day to see about an axillary lymph node excisional dissection. I was a little surprised they triaged me right away like that, I told my GP I just wanted to loop him in as well, in case I'd need a referral from him. No referral needed. Saw the breast cancer surgeon the next day I think it was. (they do axillary (armpit) lymph node dissection all they time with breast cancer patients)
She was great, looked over the PET CT with me, and discussed the risks of excisional biopsy, and was seemingly leaning towards doing that, but looking at the PET/CT again the node they had initially targetted looked like such a perfect straight shot, she then kind of switched in her voiced preference to give the needle biopsy one more shot.
This time she asked interventional cross sectional radiology to emplace some "fiducials", little non-ferrous inert metal beads that should the repeat needle biopsy fail, or turn up cancer, she'd be able to surgically locate and excise the exact lymph node.
The second needle biopsy went as well, or better than the first even. I'd go back dozens of times not a bad experience at all, in my case. The local anesthesia lidocaine stung a bit at first, but the rest was fine. So I am not sure why the NP was all about "not wanting to put me through that again..."
For the fine needle aspiration on the second attempt, same results of the first, mostly blood, non-diagnostic sample, no lymphatic cells present.
The second core needle biopsy result actually harvested some lymph tissue this time, with no evidence of carcinoma. Some features of a reactive lymph node were noted.
They did include a pretty large disclaimer about it being of the utmost importance the ordering physician do a close clinical correlation of clinical symptoms and radiology results as the same size was very small and may not be indicative of the state of the entire lymph node.
The surgeon called me back this week, to close the loop, and said at this time no further work up is indicated.
So I'm not 100% satisified, but I do agree we are better situated now, having at least some lymph tissue from that node pathologically examined and no cancer was found.
One good thing is that now those fiducial beads are implanted, I'll try to remember to ask about a repeat PET/CT maybe 9 months or a year (well 9 months from now would be a year from the last PET/CT). Seems to me that if the same 3 lymph nodes were still FDG avid then, then an excisional surgical biopsy approach would absolutely be indicated then (barring a solid explanation from the experts on why they may do that apart from cancer, but would seem highly suspicious to my layperson self).
I did note with her on the phone call I still have some lumpy bumps and ridge and valley type features that are sore on the edge of both pectoral muscles where they border the armpit area, which did not seem to register as being significant with her.
I have a lot of minor pains and sore spots, that I kind of down play in severity, well not really down play, as they are just low level annoying sore spots. To me its signals from my body, but I guess that's the fun of medical diagnositcs, filtering out the signal from all the noise.
As we get older more aches and pains...just a little hyper-vigilant I am not missing some early symptom of recurrence or spread.
I never really thought it would be my oral squamous cell carcinoma from my tongue, a tiny micro-invasive grade 1 tumor, I would be a textbook oddity and subject of someones paper I'd imagine if it was OSCC in the armpit lymph node after such an early small tumor.
I was concerned (and still remain not 100% at ease about it) about another primary, be it lymphoma, melanoma, or some kind of soft tissue sarcoma with the odd cystic like feeling sore spots on the pectoral muscles.
But, so far, no news of further cancer.
I'll keep close tabs on all this with my various doctors. At least I am now an established patient with another CCC oncology surgeon and have some fiducial markers implanted if the nodes decide to not be benign.
That's all the news from Lake Woebegone, as it were, with regards to this experience.
11/07/2019 Moderate Epithelial Dysplasia of right lateral tongue 1/01/2024 Focal microinvasive squamous cell carcinoma right lateral tongue
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