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Should I let it go or ask for more testing

Sorry for spamming this page over the last 8 months off and on. You know my situation with lymph nodes, a handful over a centimeter long, one .7 mm wide. Etc I guess at this point what should I do. The doctors from day one have all said they are not concerned and dismissed it. Having said that I have well over 10 nodes enlarged more than they were prior a year ago. Along the entire front of my left jugular, along my entire posterior cervical chain (the ones I first noticed) under my jaw a few etc. they all are pretty normal feeling although one does feel matted (like two tiny dots stuck together) however I’ve had that since I was a late teen.

I guess should I let this go or push for more testing at this point? Is the matted node worrisome? Are the posterior nodes truly more threatening? Or should I just forget about all the nodes and move on?
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1081992 tn?1389903637
COMMUNITY LEADER
I think you should get the biopsy.

"Sorry for spamming this page over the last 8 months off and on."
No, not at all.

Helpful - 0
3 Comments
Is your opinion on the biopsy based more on my symptoms or more on my state of worry regarding the symptoms?

Regarding the posterior chain I have read they commonly swell during upper respiratory infection (which is what I had prior to all this a year ago) so to me assuming that is correct that doesn’t make them quite as scary. On top of that if it were metastatic growth from another region I was told the Neddle biopsy does definitively rule out pretty much anything but lymphoma in terms of cancer.
My other question regarded slow growing cancer. So say for example I was wrong and these nodes popped up slowly over the course of a few months (I think that incredibly unlikely with how body conscious I am at least for the ones on the side of my neck) would that be more concerning for low grade lymphoma since I’ve now gone a year with no growth? I did review notes regarding what they told me and it said directly ‘with something like follicular lymphoma we expect an approximate growth within an affected node being a doubling in size within 6-12 months typically’ so I guess I’m just confused, I’ve read some lymphomas can go dormant for years and also heard even the slowest growing ones should have some progression (in nodes themselves increasing in size at least) within a year. So it just seems contradictory unless the aforementioned information meant dormant only in terms of symptoms.
So please let me know if you think I should more for my own peace of mind or just generally I should based off of what I’ve bedn presenting with. I should mention something else interesting, typically I will get sick twice a year. Since the nodes popped up over a year ago I haven’t had a single illness. Does that almost point to my immune system still chewing on that old respiratory infection or still ‘activated’ so to speak?
1081992 tn?1389903637
COMMUNITY LEADER
"Are the posterior nodes truly more threatening?"

I don't know why that is said but I'd guess the following:
- they do not drain any opening (eyes, ears, etc) so are less likely to be infection
- therefor it's just math, less chance of infection means what remains is non-infectious... but then again that analysis is misleading because it doesn't account for odd, non-malignant immune reactions



Helpful - 0
1 Comments
I’ve read multiple places respiratory infections do affect the posterior nodes though?
1081992 tn?1389903637
COMMUNITY LEADER
...and, the posterior nodes might be suspect for metastasis not lymphoma. But metastatic nodes are more likely to be calcified, which would have shown up on US.  
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
(Sorry for the delay, I've been having some rather big problems.)

"So please let me know if you think I should more for my own peace of mind..."

Yes, that is astute of you. I've switched now and am saying to do it for peace of mind. The reason? There can be no end to thrashing about with thoughts of why/how it could be cancer. That's especially noteworthy because you're focusing now almost exclusively on dimensions, though we have discussed that single dimensions are not very specific (unless gigantic, of course). Maybe you're focusing on single dimensions because that's what the scan reports focus on? I can give an opinion on that.

I'll also restate, as I always have, that I think you should have the biopsy in order to find the real, non-cancer cause -  which means they have to look for that and not merely rule out cancer. That's even more true if the number of genuinely enlarged nodes is multiplying.

"I should mention something else interesting, typically I will get sick twice a year. Since the nodes popped up over a year ago I haven’t had a single illness. Does that almost point to my immune system still chewing on that old respiratory infection or still ‘activated’ so to speak?"

Yes, that is interesting and it's not the first time I've heard of such a thing. I'd say it's from immune activation, whatever the cause of the activation (a real infection or immune dysfunction). I'd also read recently about some recent research work wherein immune cells are being genetically altered to be always activated, then injected into patients with weak immunity who are undergoing potentially deadly sepsis -- so these concepts are not just pie in the sky. Also, I recall something about people with allergies having less chance of getting cancer.
Helpful - 0
1 Comments
Also I will be praying whatever problems you are facing clear out. I apologize I bombard you with questions, any frustration you’ve felt in my words I hope you understand are directed at the nodes themselves and you’ve been nothing but helpful which I’m very thankful for
1081992 tn?1389903637
COMMUNITY LEADER
"I’ve read multiple places respiratory infections do affect the posterior nodes though?"
I don't think you've mentioned any chest infection until very recently. Correct?
Helpful - 0
1 Comments
Going way back to when they popped up, the bad infection I had a couple weeks beforehand was an upper respiratory infection. I had terrible coughing I could hardly breathe, I coughed up blood a few morning etc, 102 degree fevers every night. I could hardly stand at one point. This went on for almost two weeks before they put me on antibiotics, after 10 days of treatment I got better but I had a very deep hard lingering cough. Three weeks later these nodes popped up (st least that’s when I noticed them. X-ray showed I had a small pocket of fluid on a lung (which they said can happen after recovering from a chest cold) but with the nodes they did do a CT scan on my chest to make sure it wasn’t something sinister, everything came back fine, the small pocket was gone at that point. Having said that the cough lasted for about 5 months. The Dr said they can last quite awhile but said mine was strong enough still he was considering antibiotics again thinking we didn’t get it all but finally it stopped. After all this they are now saying it’s potentially possible I had the beginnings of pneumonia and the antibiotics weakened it, I stopped them and the infection tried to come back (then lymph nodes pop up) and I’m able to slowly kick it over several months. At least that is my PCP’s theory and he is a pretty good doctor when it comes to investigating an issue. So I guess no matter what it’s safe to say I have a case of laryngitis with a terrible cough (initial listen to my lungs didn’t have too much rattle but with the X-ray etc it points towards at least some bronchitis) I would assume could qualify as upper respiratory. I just don’t understand the delay between infection and the nodes enlarging unless it was reacting to a remnant infection still kicking.
1081992 tn?1389903637
COMMUNITY LEADER
If there is an underlying chest condition that is driving immune activation, then that's possibly an avenue to explore: quell that chest condition and see if the nodes subside.

Helpful - 0
1 Comments
Can pneumonia cause lymph node scarring? My chest is clear now but the illness I had before the nodes popped up almost matched walking pneumonia symptoms to a T. And given the nodes one way or another are most likely tied to that event and scarred, could a bad pharyngitis and chest infection also swell nodes along the jugular set and under the chin too?
1081992 tn?1389903637
COMMUNITY LEADER
(1) I would be surprised if this is not all related.
(2) What did the sputum culture say? Bacteria found?


"could a bad pharyngitis and chest infection also swell nodes along the jugular set and under the chin too?"
Your CT ruled out TB and sarcoidosis, but nevertheless consider that they occur mainly in chest but can also cause neck nodes to react. So also can an arm/hand scratch in Cat Scratch Fever (Bartonella) cause neck nodes to react. Therefor, if those conditions (which you don't have) can do it, then why can't your own chest infection do it?  See the parallels? That means we are not always bound by lymph drainage patterns.

Sarcoidosis, btw, is some mystery immune dysfunction with unknown etiology.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"Also I will be praying whatever problems you are facing clear out."
Well, thank you, Spartan. I sincerely appreciate you saying that.

"I apologize I bombard you with questions"
Nah, we're practically buddies now :)  No need whatsoever to apologize.

"...any frustration you’ve felt in my words I hope you understand are directed at the nodes themselves"
Certainly.  

"...and you’ve been nothing but helpful which I’m very thankful for"
Once again, I sincerely appreciate you saying that. You're a good man. Tell you what though: make sure that when this finally gets solved, you'll let me know and not just disappear. Deal? Lots of people/patients just disappear.
Helpful - 0
1 Comments
I will be sure to let you know immediately any updates and the conclusion to this issue!

I should mention I recently got a complete report to my history from mayo and I guess my largest node is in my right side of the neck (non palpable any on that side however) but it is 2.6 by .9 cm! That has me majorly concerned, they confirmed it’s been there at the same size since November of last year...still they only call it prominent not enlarged. That seems wrong doesn’t it? Are you concerned about that one?
1081992 tn?1389903637
COMMUNITY LEADER
"2.6 by .9 cm! ...Are you concerned about that one?"
Nope, because a reactive node grows that way: long and thin.


"....still they only call it prominent not enlarged. That seems wrong doesn’t it?"
I'm with you on that one. 'prominent' seems nebulous. I found these 2:

Radiology Report Best Practices 2016
'Additional tips to creating a high-quality report included:
Size and Measurement... there should be a consistent expression of size such as “trace, small, moderate, large, extremely large,”... stay away from words like “tiny, prominent, chunky, or inconspicuous.'
https://www.diagnosticimaging.com/news/radiology-report-best-practices

The   Radiology Report  2016
'Perhaps the most mysterious word in radiologist’s lexicon is “prominent” such as “pulmonary arteries are somewhat prominent.” Not even radiologists know what “prominent” really means.'
https://thehealthcareblog.com/blog/2016/02/12/the-radiology-report/

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2 Comments
Okay, so I’m assuming if I do push for biopsy that big boy would be the best candidate even though it’s on the right side (opposite the palpable ones) honestly for all I know that one could have been that way forever since it’s non palpable but shouldn’t the size still be concerning? Or is the long to short ratio still a very good sign?

I guess it does still fit the ‘short axis’ being small deal. But if it’s reactive wouldn’t it have gone down after a year? It’s stayed the same size every ultrasound it says. The hematology report does say that ‘his risk for an indolent lymphoma is very low given the stability in nodal size’ do you agree with that assessment even with the large size?

But yes the prominent term is all they used, the hematologist directly told me in person “we wouldn’t even qualify these as enlarged just prominent. Many things can cause prominent nodes, from dental cavities, to autoimmune conditions, or normal variance’ now one thing of note is my one sensitive tooth (no cavity but dentist said it is ground down which is why it’s sensitive)  is on the right side so maybe correlation? That or maybe that node has been there years before that size and I never knew, honestly I couldn’t say there. They also only ever mention ‘he tested slightly positive for ANA at 1.7’ again no info on titer’ I’m not blaming hematology but the radiology reports just seem lacking beyond saying every node looks normal.


Also the FNA report only lists ‘benign lymphocites’ Is that normal?
I will certainly tell you the outcome here, I really want to push for biopsy now, I just wish I knew which node the best. The doctor who offered it unfortunately moved cross country and said he couldn’t guarantee another doctor doing it but with his notes I’m confident I could find someone from his office. Still I just am very frustrated I was finally calming down about it when suddenly this bomb drops. All the ENT reports say ‘subcentimeter lymph nodes’ so unless they aren’t getting the full report?
1081992 tn?1389903637
COMMUNITY LEADER
"I just wish I knew which node the best."
The surgeon won't care what a patient thinks on that. It's about:
- the most suspicious
- but being not risky, e.g. being accessible, near skin and not near nerves, etc

"But if it’s reactive wouldn’t it have gone down after a year?"
I've been mentioning 'fibrosis' since way back, which is akin to scar tissue. It could take forever to go down, but is benign and inert. There might also be some active inflammation at the same time.

"The hematology report does say that ‘his risk for an indolent lymphoma is very low given the stability in nodal size’ do you agree with that assessment even with the large size?"
Absolutely. Very low.

"...my one sensitive tooth (no cavity but dentist said it is ground down which is why it’s sensitive)  is on the right side so maybe correlation?"
Pain biochemicals like Substance P and Bradykinin can probably create an inflammatory reaction downstream, I would think.

"Also the FNA report only lists ‘benign lymphocites’ Is that normal?"
Yes, that's very good. It would be interesting to see what tests they did for that. Like Flow Cytometry to see what cell surface proteins are there (normal everyday ones versus cancer ones), plus possibly gene testing like FISH to look for cancer mutations, and/or looking for clonality.

Did you tell me you had an FNA? I don't recall that because I would have asked for detailed results.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"I really want to push for biopsy now, I just wish I knew which node the best. The doctor who offered it unfortunately moved cross country"
Sorry to say then that it might be too late. I was surprised that they were willing in the first place. Insurance might have very well declined nevertheless. It's even more unlikely now with a benign FNA. But then again, you never know until you try. I'd call that doc and ask them to intervene, if nothing else works.

Remind me to look up exosomes for lymphoma, if they exist yet. Or you  can look.
Helpful - 0
1 Comments
So the doctor did put in his notes about his offer to me and hematology said on theirs they told me that if it really bothered me to push for biopsy, that gives me a good deal of hope as they can see their notes to see I have some grounds for the request. I did have an FNA however that was of a node on the left side (I think a 1.6 cm by .7 cm node) still it got 10 samples, it does say they ran ‘cytocogy tests’ on it not sure if that includes what you mentioned or not. I was under the impression that was only done under full excision biopsies and sometimes core needle not just an FNA?
1081992 tn?1389903637
COMMUNITY LEADER
Well then, I'll be rooting for you - in that they'll approve the resection.

I would guess that they cannot take the deep node using only local anesthetic,  as they might with a superficial node.


AFAIK:
-cytology refers to looking at individual cells, or at a group of cells as individuals, being done via using a microscope and an FNA sample smeared on a slide
-immunocytochemistry is the same, except that it involves adding fluourescing antibodies that tag specific proteins in the cell
-flow cytometry is the same as immunocytochemistry, except a stream of cells is passed in a jet of liquid past a sort of detector

-immunohistochemistry is like immunocytochemistry, except the sample includes surrounding tissue and not just cells. So it should make sense that using a bigger core needle would be more suited than FNA for that.
Like so: "With these data, we could conclude that IHC was more effective following CNB than following FNA." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6453787/  2019
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2 Comments
I know we’ve talked about how FNA has a pretty unreliable metric of diagnosing low grade lymphomas, that being said I was told that FNA’s are definitive in ruling out malignancies of other natures like if I were to have skin, thyroid, or another cancer etc is that true? They also mentioned that even though FNA can’t disgnose low grade lymphomas well, it can usually at least spot something that is off leading to further tests based on suspicious findings even if not definitive, is that true? One doctor tried to relieve me by saying that FNA would at least see evidence of something amiss even if it couldn’t directly diagnose low grade lymphoma were it there.

Still given all that information, even with the 10+ nodes enlarged from their original state, even with a handful being over a CM and one over 2, that this isn’t cancer or anything insidious. The doctors have all said if I wasn’t so concerned myself they would cut me loose without a second thought. While I certainly will keep an eye on them do you agree with their overall assessment that my cancer risk is less than half a of percent? (Hematology said that specifically) obviously it’s something I will keep tabs on, but I’m engaged, I’m finishing university and honestly these nodes and all this has just been making what should be a happy time hell, I just want to know if it’s truly nothing to worry about or if I need to look more into it. Because I want to move on and get back to life, I simply haven’t felt like I’ve been living since I got sick in October of 2018

Something to note, shortly after the lymph nodes popped up I began having recurring diahhrea, I mean bad cramps and gas pains and major loose movements (apologies) the would come and go once or twice a month for about 10 months and during that time I noticed some more bruising than was usual, just painless small bruises that would last a few days and disappear but I noticed several of them over those few months. About 4 months ago that all stopped. I did test low for B12 (very mildly low) and came back negative for perniscious anemia, I am not a vegetarian. The number slowly got back to normal. Do you think this could be related to the nodes? My only concern is lymphoma in the GI tract and the easy bruising being a sign of lymphoma or leukemia. But I would assume that would have been more of constant in that cirumcumstance
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