"So I guess my question is, can lymphoma/hodgkins evolve this slowly and cause symptoms years before any nodes are there ?"
A cancer can do many unusual things, especially a cancer in immune cells; but what you describe is *unlikely* to be cancer, not even an 'extra-nodal' lymphoma like MALT.
Similarly but conversely, conditions centering around immune system cells running amok can do many unusual things - and often don't get diagnosed for years, even after seeing many docs.
"4 years ago I got a very nasty flu-like illness."
Right away, I think of a "post viral syndrome", which roughly means the immune system goes amok after a bad virus, though there might have been related signs long before. If you haven't already, please read up a little on that.
"Every 3 months each year I would get the same flu-like symptoms for about a week."
are mold or pollen possibly involved?
"autoimmune problems and infections have been reliably eliminated"
I would have to disagree. Even an occult infection is still remotely possible - e.g., any jaw or teeth problems? Tested for lyme and coinfections like babesia? Then there are autoinflammatory conditions, without any autoreactive antibodies or T-cells.
"The nodes in my neck are all small (less than 1 cm in all dimensions)"
round or oval?
could be inflammation and immune chemicals such as bradykinin, even without any infection. Any Fx of odd immune conditions?
"Should I insist I get a biopsy ?"
I wouldn't. But can you post the latest sono report(s)? I'd want to see what, if anything, is said about the architecture. E.g., is the hilum present? Plus rarer observations, like how are the borders? There might also be something there to possibly maybe make a case for a needle biopsy.
Btw, that is an exceptionally well written post by you. The thoroughness and clarity makes the situation easy to grasp.
Btw, there is a long thread here which includes people who have had the alcohol induced pain, but don't have HL.
Thanks a lot for your answer! and for complementing my writing :D
I will look for that thread. I was under the impression that pain after alcohol was very specific to HL. It is what made me suspect it. Kind of weird that it almost completely went away after being there every single time.
The sono reports barely describe the nodes:
- first says they are normal and that's it
- second says they are normal and reports some sizes: 7*2 mm, 2*1 mm and 2*2 mm. So I guess the last one is round. But they say specifically it looks normal.
- third finds more of them and says they are still all less than 1 cm. The "new" ones under the jaw have a hilum. Nothing about the others so I guess they can't see it there. From what I found, you can't always see the hilum anyway so when you do it is a good sign and when you don't it does not mean much. Is that right ? Anyway the conclusion says: no real adenopathy found.
As for the other possibilities: well with blood work stubbornly normal for 4 years, no doctor was taking me really seriously after common infections and autoimmune conditions were eliminated. The closest I got to a diagnosis was: cyclical auto inflammatory condition that does not require any particular treatment. To be honest, with less and less of the flu-like attacks, I myself had settled on bizarre post-viral syndrome that takes years to go away on its own. The night sweats have made me and the doctors worried. But the lymph node that is most palpable is so small that they brush it off right away. And I have not found any other one condition that explains night sweats + itching + alcohol pain + lymph nodes.
My GP says that she found the lymphoma in her godson so she does not take this lightly. But she keeps pointing out my normal blood work (and the "normal" nodes) as the reason why I don't have it. But I keep reading that blood tests don't mean much with lymphoma.
Thanks again for your answer. If you have any comment on the sono results it would be great, or if a biopsy is possible with nodes of this size.
"I was under the impression that pain after alcohol was very specific to HL. It is what made me suspect it."
The articles on that do seem misleading to me. Did you find that alcohol/nodes thread here?
"Kind of weird that it almost completely went away after being there every single time."
Yep, and that's tending against HL, I'd think.
"Nothing about the others so I guess they can't see it there."
I would think the opposite, that something not mentioned is likely normal - i.e., hilum is indeed present.
"...when you don't it does not mean much"
Well, absence of the fatty hilum in a benign node would give important clues as to what benign process is occurring, and which also enlarged the node.
"cyclical auto inflammatory"
Some go like clockwork - I'd mark a calendar on when they exactly happen, to see. Some others would show on a cbc - so I'd want a standing order to use at the next onset... or you can order that yourself in most states if you choose.
"does not require any particular treatment"
Not at this time, I suppose. Except you can try to generally quell any inflammatory tendencies.
"the night sweats have made me and the doctors worried."
The DDx on that is pretty broad, though.
"night sweats + itching + alcohol pain + lymph nodes."
At this point, I'd suggest looking at MCAS - just to see what immune cells (mast cells in that case) can do on their own. A *lot* of variety. There might even be anecdotes on alcohol pain.
Here, "severe night sweats" from MCAS are mentioned:
"But I keep reading that blood tests don't mean much with lymphoma."
True, unless on a CBC there's marrow suppression (which I would guess your doc saw in the godson), or a sometimes seen leukemic phase.
"or if a biopsy is possible with nodes of this size"
I don't know of any surgical reason that the excision couldn't be performed, or the pathology done -- but insurance wouldn't pay for it and surgeons would likely refuse to do it (with the normal sono features having been seen), because it's not worth the small surgical risk. Or refused if the biggest one is in a very precarious spot.
I do believe there are studies in journals correlating small nodes that look bad on sono, get excised and then are path proven to be cancer - lymphoma or metastasis.
I did the calendar thing. I get one attack in September/October and one in April/Mai and then 2 or 3 in between but this last year I did not get the ones in between and the one in April was the shortest and mildest ever. Only new thing I did was taking Omega 3 supplements for 6 months because I heard that they fight inflammation. I guess they do.
I did 2 blood tests during the thing. CBC always normal but CRP was high once (27) with another inflammation marker (fibrinogen).
I found many threads about alcohol pain. My conclusion would still be that if you have it and a lymph node somewhere, you really should eliminate HL as cause because of the link between them. Unfortunately ruling HL out completely is not easy since it requires a surgery.
Final question if someone knows:
it is hard to tell when it's so small, but I could swear that the most palpable node has gotten bigger then smaller then bigger then smaller again since I've first found it in December. So it is still roughly the same size. Does this point towards something in particular ?
Yes, I would like to see the sono report - though I doubt that it is very detailed.
"I explained how they aren’t and how they are asymettrical from one side to the other."
I agree with that. Btw, pressing on them a lot can cause them to seem larger because the irritation can cause some swelling.
"I’ve never had these until after my infection in October"
most likely fibrosis
Tell you what, try watching this very informative lecture a few times:
"Sonography of Lymph Nodes"
Then maybe you can ask for a very detailed evaluation of your next sono and/or a rereading in the images from the most recent past sono.
" CBC always normal but CRP was high once (27)"
That stands out. Did you have any symptoms then?
Hello again :)
I think your before last answer is meant for another thread
The 27 CRP was during a typical flu-like attack. So stuffy nose, headache, pain behind eyes and in throat, muscle aches, the whole deal, but rarely with fever. I only had one other blood work done during an attack and everything, including CRP, was normal.
scousa, since you had symptoms, then that CRP is probably not unusual.
A node can 'wax and wane' from inflammation.
The video lecture that I pointed to includes the claim that a detailed sono can be as good or better than a needle biopsy. But looking for HL rather than NHL with a needle might have different probabilities for false negatives, because of the presence of Reed Sternberg cells in HL. They are readily seen because of the "owl eyes" appearance. Take a look:
If they are diffuse throughout a node, then maybe a needle biopsy has a very low rate of false negatives in HL.
(Yep, it looks like two threads got intertwined here.)
A doctor is suggesting I get a PET scan. He says the lymph nodes are too small for a biopsy, also considering the small surgical risk of any operation. The nodes are still the same size (pretty small, less than a centimeter in all dimensions), but more keep popping up in my neck.
So is a PET scan a good idea to know whether the lymphs are malignant or not ? By that I mean are its results conclusive or very close to conclusive ? From what I have found, it may not be able in some cases to tell the difference between inflammation and cancer, in which case it would be a (huge) waste of money...
"it would be a (huge) waste of money... "
Hi, I have to agree with you there. Once again, you are correct.
I wouldn't even think that PET can distinguish between sarcoidosis and Kikuchi and lymphoma. Even whether the SUV would be high or low, wouldn't tell you much. (The groin might light up, but how useful is that? Not much at all.)
Let's take a quick look at Kikuchi disease, not because you have it, but just as an example of how mysterious uncertain things can be with the immune system. Terms like 'usually' and 'maybe' dominate.
"Kikuchi disease is a benign disease of the lymph nodes. The main sign of Kikuchi disease is usually swollen lymph nodes in the neck, which tend to develop suddenly."
"While the exact cause of this condition is unknown, infectious and autoimmune causes have been suggested."
"Kikuchi disease usually gets better (resolves) on its own within one to four months"
[In a 1988 study] "40% of patients with Kikuchi disease were initially misdiagnosed as having lymphoma and were consequently overtreated with chemotherapy."
Then follows there the Differential Diagnoses. (By the way, do you have a cat? Cat scratch fever is on the list.)
But Kukichi's has necrosis in the nodes (usually), and that would have shown on your sonograms. Probably. And would be painful. Usually.
And Kikuchi's isn't associated with being a post-viral syndrome, which I think is the big clue in your case. Still, nobody knows what it is or why it just stops.
How about with painless nodes in the neck?
"The exact cause of Rosai-Dorfman disease is unknown (idiopathic), but it does not seem to be of neoplastic nature. Researchers have suggested that the disorder may be caused by an infectious agent, immunodeficiency, or autoimmunity." The usual 'maybe's and 'usually's apply.
Btw, Rosai-Dorfman once again makes me think of a needle biopsy, which can find immune cells such as histiocytes, etc.
Hey, thank you for your answers again. A head-scratcher indeed... Sarcoidosis' symptoms do somewhat fit.
Many scientific papers I find do say that false positives are 'frequent' in PET scans, and false negatives too when the tumors are too small (less than 1 cm, which is my case). To quote one : [https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4043003/]
'However, frequent false-positive findings associated with inflammation and infection considerably negated the diagnostic performance of PET/CT. Herein we suggested a possible remedy for that limitation: frequently, overactivity in bone marrow and spleen can be helpful to differentiate systemic inflammatory change from malignancy'
Given they had only two people with lymphoma in their study, their suggestion is questionable at best. And PET is still mostly considered a staging test from what I find, even in autoimmune conditions.
On the other hand I am feeling better and the last blood work was 100% normal, no inflammation markers or anything else. So I am tempted to think that a PET scan would find no inflammation or infection and would either be negative or find a malignancy and therefore be conclusive. But I know things are not that simple
Sarcoidosis can appear in the neck, but usually spreads there from the lungs (which your scans would have seen; even a plain x-ray can, I think). However, there are other types of granulomatous diseases, and your nodes might be filled with granulomas -- or fibrosis, or active WBC proliferation. Or a combination.
In the study you cite, I would compare in Figure 3 the lines for SUVBM/L with the line for WBC. In other words, the excess metabolic activity seen in the marrow is from ramping up production of WBCs.
But those are averages. It is absolutely wonderful when a paper gives individual patient data. So look at Figure 3, a and b, and see the wide spread for the Reactive group. Now things are not so indicative. Or even see that Fig 3c shows a spread in the malignancy group, presumably in the nodes of indolent versus aggressive cancer.
So yes, as you say PET is mainly good for staging/where-is-it-at, once a Dx is known. Not so great for Dx.
Interesting sidelight: PET uses antimatter (positrons), and just like in a sci-fi story they annihilate when they encounter electrons.
"So I am tempted to think that a PET scan would find no inflammation or infection..."
I would be surprised if the nodes didn't light up. But that tells you almost nothing. But if they were completely dark, I'd suppose that would say there is nothing but fibrosis inside, which I'd guess would be rare to have nothing else going on inside.
"...or find a malignancy and therefore be conclusive"
I don't personally know of a way that could be.
"On the other hand I am feeling better"
That's very good news, so I would just go on as is - and if there is a flareup, I'd intensively concentrate on what might have triggered it. That might be a virus cold, or something in the gut or whatever.
But to "just live with it"? Nope :) You'd want to be figuring this out, and you've got the mind for it so that's a big advantage you have.
"4 years ago I got a very nasty flu-like illness"
Did you by chance have lots of Abx back then?
Nope no antibiotics at all.
Rosai-Dorfman somewhat fits too. But no doctor is considering a biopsy right now. Watch and wait with repeated blood tests is pretty unanimous. Or a PET scan if it would make me worry less. I should have mentioned that that's how the doctor phrased it, he first just told me to come back in 4 months with new bloodwork as there was nothing to worry about. At the end of the consultation I remembered the alcohol pain and mentioned it and he said: but you don't have other signs indicating HL (I did not bring up HL) but if you are very worried, I can send you to a PET scan and that will end all doubt. And I was not so sure about it really ending all doubt.
Anyway, thanks again for all your help.