"but they're from a recent infection"
Hi, the way to interpret that is "they are reactive, and being reactive *usually* results from an infection. They do not look cancerous."
'Reactive' means an inflammatory reaction which is produced by the immune system's biochemicals. But your immune system can bring about an inflammatory reaction without any active infection being present.
Your whole history seems to reflect an inflammatory condition. There are inflammatory conditions that are not found with typical "autoimmune" testing.
You have described a slew of symptoms and ask if it could be lymphoma. It is very unlikely to be lymphoma. But you should understand that lymphoma produces those symptoms via inflammatory biochemicals, so inflammatory conditions can mimic the same symptoms produced by a lymphoma. It's the same resulting symptoms, but with a different origination.
E.g., itching and hives are produced by histamine, which is an inflammatory biochemical produced by the immune system.
Hi again, this is a big change up and yes we need to focus on the bumps/nodes. If we want to look for reasons that this is not cancer, one thing is to see if there is any plausible alternative explanation. Since your nodes probably are downstream of whatever is happening in the tonsils, that is a plausible alternative. 'Downstream' means that whatever is in the tonsils, including inflammatory chemicals, will travel via lymphatic vessels down to the nodes and can make them react.
Otherwise, was the CT done with contrast? To my mind, contrast is needed to see inside the nodes and to know what the internal "architecture" looks like. If there is seen an internal structure called the "fatty hilum", then that identifies nodes for sure, and it very, very likely means "benign". That's what I figured was in the radiologist's report, when it said "reactive". Did the PCP mention the presence or absence of the fatty hilum? But if contrast was not used, then that's frustrating because it pretty much only tells the dimensions (and shape). I'm guessing it was a no contrast CT.
The ultrasound would have seen the internal architecture, so that was awfully bad luck that it didn't look in the correct place. I'd think about asking for another US, and this time you'd of course make sure the tech scans the exact correct place. I'd even ask the tech right then, "do you see the hilum?" They're not supposed to answer, but some might anyway. Also, when they switch the ultrasound to color Doppler, you'd want that to see "no peripheral blood flow". I'd look at a new US as a way to mostly rule out cancer.
Getting back to an alternative explanation: TMD also can have an inflammatory component, and the nodes might be downstream of that. Ironically, things would look bleaker except for the presence of these inflammatory problems.
Where are the tiny hive bumps? The neck?
Yes, a node being rounded *tends* toward a cancer, but does not automatically mean that it is. The size is still not that concerning.
I've been discussing this week with Spartan about his doubled nodes. And size and shape. There are two posts of his surrounding this one.
Can you post the CT report? Anything there about calcification?
Btw, some docs like to go quickly to a biopsy, others do not. It's just a personal preference. I'm not a doctor, but I'd want another US before going to biopsy. I don't know, though, about what insurance hassles that would bring.
I'll make a case for not-cancer.
"appearance compatible with reactive nodes" implies presence of fatty hila, and absence of anything that looks like cancer (such as fuzzy borders, asymmetry, cystic areas).
Bilateral tonsil inflammation can lead to downstream bilateral node inflammation. However, although cancer could theoretically cross over from one side to the other, that's not exactly likely without it also popping up anywhere else such as under arms, in groin or marrow. That's just a matter of mechanics, cancer cells travel by floating via lymph vessels, and those vessels do not cross directly over.
Matting is commonly thought of as a sign of cancer, but it can otherwise just be from fibrosis (collagen fibers) that occurs because of inflammation. There have been one or more cases of that here.
Growing for years yet they still have hit a size ceiling of 1cm.
The fevers/sweats do come under the heading of B-symptoms associated with lymphoma, but they are usually with more advanced lymphoma. More importantly, they occur because of immune system biochemicals, so then they can happen directly from immune system dysfunction and don't necessarily have to involve cancer.
"The hive bumps are everywhere (except face, palms of hands and soles of feet) they move around..."
Well, cancer can do almost anything, but still that's pretty strange for cancer. More like immune system. Probably.
Nodal cancer is not limited to lymphoma, it can also be metastasis of any nearby head-and-neck cancer. But metastatic nodes tend to have calcification (lymphoma sometimes does), and more importantly no primary cancer was was seen on the CT. Metastasis seems fairly ruled out.
"I don't have an autoimmune disease"
For background understanding, that's more properly said as "I don't have an autoimmune disease for which there is commonly accepted testing, that is used to try to identify the commonly known autoimmune diseases".
'Autoimmune' involves autoreactive antibodies or T-cells. Other immune dysfunction can result in enlarged nodes.
"nothing else panned out"
There are mystery conditions involving nodes, like multicentric Castleman disease (the "great mimicker") and Rosai Dorfman.
I'd push for a new US. There is also needle biopsy.
Is the tiebreaker 2nd opinion with an oncologist?
I won't give the pro-cancer case unless you ask.
The standard of evidence needed to think that a biopsy is warranted is lower than the standard needed to say that cancer is likely. Yes, I'd think that cancer is possible but not likely.
Pro-cancer arguments are the obvious ones: rounded nodes, some in a possibly metastasis-like chain, that had apparently grown steadily for a long time. Plus the B-symptoms. That view is also simplistic, which is generally appealing in diagnostics. You might have heard of 'don't look for zebras in Central Park'. If it were cancer, it would be indolent and perhaps not even treated for now - watch and wait. Btw, younger age roughly leans towards Hodgkin's, older age toward non-Hodgkin's.
How rounded though? I wish we had the dimensions, they were lacking in the CT report. 1cm x 1cm is worse than say 1cm x .7cm. The accepted threshhold is that benign length should be at least twice width. Also, exact size is very useful for comparing any future scans to see whether it's growth, reduction or stable.
Mystery immune conditions OTOH are rare and complicated, not simplistic.
Since you are very sharp, I'll strongly suggest acquainting yourself with Occam's Razor. It's so important that it also has two other names: Lloyd Morgan's Canon and Law of Parsimony. We ideally should seek to tie in all your history/symptoms together (something specialists don't ordinarily do). Since you have an analytical mind, you can choose to mentally explore that approach and therefore feel more like yourself, rather than dwelling on cancer for now.
"seeing an ENT. I figure if my tonsils are involved or there’s a non-cancer explanation, they may be able to offer insight into an alternative theory."
Bravo. You can also rehearse a case to present to the ENT to encourage whatever explorations you might want. I would normally think of a a rheumy, but you saw one already. Still, a casual opinion is that some rheumys just plod along by the book, while others do more analytical thinking. I don't think you had the latter.
Also, if we are talking about deep nodes, an excision is a 'worse' procedure than for a superficial node.
Let me know how Tuesday goes.
"My doctor won't compare the MRI to the recent CT to see if the nodes are visible in the December MRI."
I'd ask another and another until you might get that done, to compare sizes. Or... that should/would have probably been noted in the MRI report, which you've read?
"Once again, enlarged lymph nodes were left out of the radiologists report"
In future, I'd take the order for a scan to any center/business except the one(s) with the weird radiologist(s). You don't have to go to where the ordering doc is associated with; that's for their benefit, not your.
"only by 1-2mm"
So possibly we can then say there is no rush to treat (whatever). Btw, nodes can wax and wane a little so maybe it's really net zero.
Well yes. Btw, there is such a thing as chronic EBV. Are you of an age to have mono? Mono can cause a rash. What antibiotic did you have for the pneumo? Any ending with 'icillin'? Ask if mono causes round nodes (I seem to recall that it does). Ask if you might have a very atypical case of mono, which is sort of akin to chronic EBV. Or if older might have chronic EBV, which is out of his field.
"something slow growing"
For very small changes, it is recommend to use the very same machine. So for a bigger change of comparing CT to MRI? That alone might account for 1-2mm, I don't know. Perhaps it is really zero change.
"they could both look for lymphoma as well as run further tests for chronic infection"
Notice that he is ignoring inflammation without infection, which is why I'd mentioned that a rheumy would be better than an ENT - if it were an insightful rheumy not a plodding one. Also he ignores the rash, which is why I'd mentioned Occam's. Pathology should also look for inflammatory cells, not just cancer cells and any infectious pathogens.
"Thursday for an in person appointment"
I'd ask: do you see fatty hilum on the CT? That's not his field though.
"no one has any other way forward"
(1) Redo the US. (2) Have another radiologist review the recent CT and explain hilum, etc. (3) or Wait and see.
Takes notes along with you :) It is extremely easy to forget or get distracted. Hopefully your husband goes with you to be the note taker for whatever the ENT says.
' The ENT said the presence of the nodes in December suggests my recent slightly enlarged nodes were due to something chronic"
Nodes can get filled with scar tissue (fibrosis) and stay enlarged almost forever.
If we want to pare all this down to the essential: use the ENT to visually check the throat and rule out infection there. Ask if a local infection there can exist without elevated WBC (I think that's true). The end.
Don't be surprised if he uses a scope.