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Even with the node being bigger every doctor refuses biopsy

You’ve seen me before, several swollen nodes after a bad chest infection nearly 3 years back now. Largest is 3.1x1.1x1.6cm many are 2 ish cm by 1cm in the neck.

Well even after pointing out the 5mm growth between the 6 months my ENT refuses biopsy. He said that can be down to technical angle and machine differences on ultrasound and said they look normal. I’m just baffled, every doctor I got to for this takes bloods, sees mildly low WBC and B12 and doesn’t bat and eye and says my nodes are fine. I’ve seen several, I just find it hard to believe no one would see something after all those visits but still worry.

Old chest X-ray from childhood shows calcifications in central lungs ‘indicative of past granulomus disease’ I tested negative for TB and don’t know what that would be given that was taken as a kid but remember granulomas being related to lymph nodes.

Anyway what should I do here? Just feel like my life is really hurting because I’m having trouble letting this go, but all the docs already have even with slightly easy bruising, slightly low WBC (for years now) and low B12.
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1081992 tn?1389903637
COMMUNITY LEADER
Hi, Spartan. I don't know how you could get an excisional biopsy, except if by chance you see a very lenient doctor; but even then the surgeon would also have to go along. So it's not likely.

On the other hand, size is not the most relevant factor. And btw US is not completely accurate, with operator variability the biggest possibility for different readings on length, IMO. If you've looked at actual sono images, there seems many times where the marker could be placed this way or that. I know there have been studies done where different operators measure the same node, and then the variance is calculated. For something really crucial, an experienced MD is better than a novice US tech.

Or the size increase could be accurate yet the node is still very benign - which I would guess is the case.

But the length is not crucial here, as the shape and the internal architecture are more important and are apparently still okay. There is that video talk I'd recommended long ago, on US of nodes. I think if you mastered that by listening to it a few times, you could be more assured.

There are also lung granulomas in the mystery immune condition called sarcoidosis.

But most likely is that the chest infection you had is still somehow driving the neck nodes.

Let's see... easy bruising, neck nodes, lung granulomas, infection kicked it off, very lean. Take a look at the recent post here, "Just to vent .... and see if a biopsy is warranted" by Caris, which is similar to you.
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1 Comments
I believe I read that post, but that person did find out more interesting medical finds didn’t they? With my my doctors think I had histoplasmosis as a child (live in an area known for it, played in the garden as a kid, had what they thought was an asthma attack but never another one etc)

I believe I showed you the sonograph image of the 3.1 big guy and even you had said it looked surprisingly unremarkable even for its size. I could post that again if you’d like, even next to the old one with it smaller.
1081992 tn?1389903637
COMMUNITY LEADER
There is such a thing as chronic histoplasmosis. This paper says that histoplasmosis might cause sarcoidosis, or that one might be mistaken for the other because they are so similar: https://www.hindawi.com/journals/crirh/2015/108459/

Sarcoidosis can cause neck nodes. It is a mystery immune condition. I bring this up to reinforce that the immune system can cause unusual things and is not well understood.

Yes, I remember the sono and how to my untrained eye it looked perfectly normal.

Here's a thought: you can look into whether there are any exosome tests for lymphoma that are now available beyond the research environment. Exosomes are molecules that cells exude and end up in the blood. There are such tests for prostate cancer.

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1 Comments
Well even the follow up (3rd one) showed the 3.1 cm node. Meaning it’s still bigger. This one even notes ‘it measured 2.6cm by 0.8cm previously but that could be tech measurement differences’ except 3 techs have now measured it 3.1 by 1.1 in a row and for 2 years they all measured it 2.6 just worried that they are writing off this change. I know lymph node signs are seen in other ways but I mean how big does one have to get before it’s worrisome?

Also does US usually even show nodal changes in lymphoma? I just don’t know where to turn and at this point it’s looking like a low grade is more likely given the growth isn’t it?
1081992 tn?1389903637
COMMUNITY LEADER
Ok, so we can accept that it truly is 3.1cm long.

"3.1 by 1.1"
That is very good as far as being oval and not rounded. The ratio of l/w should be 2 or better. That's 2.8. For some reason, reactive nodes get longer in an orderly way, but cancerous nodes get rounded because they grow in all directions willy nilly.

"how big does one have to get before it’s worrisome?"
You can try finding a study where they measure reactive nodes and give all the individual data, not just summary data.

"Also does US usually even show nodal changes in lymphoma?"
Yes, as discussed many times before. A node filled with cancer cells will look different on US than a normal reactive node.

Try looking here at cancerous nodes:
https://www.ultrasoundcases.info/cases/head-and-neck/lymph-nodes/malignant-lymph-nodes/

"it’s looking like a low grade is more likely given the growth isn’t it?"
Nope. What I'd say is that the inflammatory process that is driving the reactive process inside the node (and making more immune cells as they benignly proliferate) is still ongoing. It's not composed of just inert fibrosis inside.
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1081992 tn?1389903637
COMMUNITY LEADER
It's far more likely for a benign node to look bad, than a cancerous node to look good. But since I've always been honest with you and not just singlemindedly optimistic... then if you like I can play devil's advocate and make a case that it is bad but looks good. That's very unlikely but still very remotely possible.
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1081992 tn?1389903637
COMMUNITY LEADER
Or, that could be the double which was said to not be true - but maybe it is true. If you ever get another US, ask that it be done from more than one direction. Or a CT should be able to do that.
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1 Comments
Yeah they specifically requested they look for signs if it being double and the radiologist said they got a good image and he’s sure it isn’t. I mean he said on image besides size it looks good.

One thing that does help me a bit is the fact I found a forum on another medical site FULL of people like me with mystery nodes after a bad cold and even people I know in real life occasionally mentioning some if I bring up my appointment etc. so it’s not something that seems terribly uncommon, my wife thinks I’m just too health focused whereas others hear what the doc says and just forget it.

What’s the devils advocate for something bad in them? I did have the FNA two years back now on a different node (but another 2+cm node) that was totally normal and she got 10 passes so 20 samples. That rules out other cancers right? I know it’s not always reliable for finding lymphoma but for like thyroid cancer or cancer from another location it’s pretty solid right?
1081992 tn?1389903637
COMMUNITY LEADER
US findings are just a matter of probabilities, while the only way to know for sure is with excision -- though sometimes even then the pathology report is equivocal. It is rarely possible that a node looks benign on US, while in reality it is lymphoma. Here's such a case: https://www.youtube.com/watch?v=yskqbVbYo5A   Here's another in Figure 4: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5392555/

Just guessing that it's 1/1,000 or even 1/10,000 of benign US reports, but it happens. A cancer can do almost anything. The same for the immune system.

A metastatic node is pretty much the same as a lymphoma node, except in metastasis there is more likelihood of flecks of calcifications, and new blood vessels. Nothing is absolute.

"That rules out other cancers right? I know it’s not always reliable for finding lymphoma but for like thyroid cancer or cancer from another location it’s pretty solid right?
I don't think so:  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4276754/  "Overcoming the Limitations of Fine Needle Aspiration Biopsy: Detection of Lateral Neck Node Metastasis in Papillary Thyroid Carcinoma"

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1 Comments
Then what’s the point of FNA at all if it’s not good at ruling out anything? I thought that while it’s limited in lymphoma it’s reliable in other metastatic issues?
1081992 tn?1389903637
COMMUNITY LEADER
The accuracy of FNA for thyroid metastasis increases if they chemically look for thyroid hormone in a node, not just microscopically look at the cells. You can check the FNA path report to see if they did check that, they probably did.
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2 Comments
They didn’t actually! But I was told the FNA was pretty good at finding other non blood cancer metastasis findings though?

Also here’s the latest report, this one says it’s even longer-3.3 but got narrower 0.8 however the cortical thickness is 3mm isn’t that big?
https://imgur.com/a/oNXVXjo
Current study shows righ submandibular lymph node measuring 3.1 x 1.1 x 1.4 cm there us a left submandibular lymph node measuring 2.3 x 0.8 x 2.1cm hilar architecture is similar to the prior study.

Continued visualization of the right and left cervical lymph nodes, these are mildly prominent.”

That was on 2/15/2021

On 5/10/2021

“Current measurement of the right submandibular node is 3.3 x0.8 x 2.6cm with a cortical thickness of 3mm left submandibular node measures 2.2 x 0.7 x 1.5cm with a cortical thickness of 2mm. There are additional normal sized lymph nodes present.

Comparing to the prior study of February 12, 2021 the size of the right and left submandibular nodes is unchanged.”

What do you think of that?
1081992 tn?1389903637
COMMUNITY LEADER
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4276754/

Overall, the false negatives of head and neck FNB are ~7% odf all FNAs done. Of all those who did end up having a metastatic cancer, 44% started out with a false negative FNB. Younger patients had more false negatives.

"false negative" means the FNB says there is no cancer, but there really is cancer.

I've never seen anyone else's US report mention cortical thickness. I would have guessed that has gone by the wayside - possibly because it has to do with absolute size which is not a good indicator.


FNA is good for ruling in cancer, not as good for ruling it out. A negative FNA would usually mean there will be no followup excisional biopsy, unless there was somehow strong evidence otherwise to suspect cancer.
Helpful - 0
2 Comments
*FNA, not FNB
So when it says ‘3.3 by 0.8 by 2.6’ which is the short axis??
1081992 tn?1389903637
COMMUNITY LEADER
The 2.6 is the short axis. So that 0.8 ratio is indeed over the line of having an oval ratio of 0.5  Except that normal submandibular nodes tend to be rounded anyway.

But, the May 10 report you posted says, "unchanged" from Feb 12. Why is that, when you say they are not the same?

Also, why does the May 10 only report the size and nothing else? Seems odd.

Can you post a list of dates and 3d sizes for every US you've had? How many report on cortical thickness?  

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4 Comments
Only 1 has mentioned cortical thickness.

Also looking at the actual images it looks like the 0.8 is the short axis...just the way it’s measured because a node that large would be way bigger I would assume
I’m with you on the confusion-they all say stable size despite jumping from 2.8 to 3.3cm long
“Current study shows righ submandibular lymph node measuring 3.1 x 1.1 x 1.4 cm there us a left submandibular lymph node measuring 2.3 x 0.8 x 2.1cm hilar architecture is similar to the prior study.

Continued visualization of the right and left cervical lymph nodes, these are mildly prominent.”

That was on 2/15/2021

On 5/10/2021

“Current measurement of the right submandibular node is 3.3 x0.8 x 2.6cm with a cortical thickness of 3mm left submandibular node measures 2.2 x 0.7 x 1.5cm with a cortical thickness of 2mm. There are additional normal sized lymph nodes present.

Comparing to the prior study of February 12, 2021 the size of the right and left submandibular nodes is unchanged.”

What do you make of that?
These are the jugulodiastic nodes by the way
1081992 tn?1389903637
COMMUNITY LEADER
There has got to be some margin of error, so that perhaps they can say that 3.1 is effectively the same as 3.3. But I don't see how 1.4cm going to 2.6 can be called unchanged. The same for 2.1 going to 1.5. But that one also seems an odd thing to happen, when no other dimension gets smaller. Cancer would not get smaller like that, so it would have to be a reduction in inflammation or else more likely just operator error/variance.

I'd have to guess that the radiologist is just assuming that the changes are due to operator error/variance, since the architecture remained the same. Researchers actually do run studies where they have more than one operator scan the same node(s), and then they calculate the amount of variability between operators. New sono techs are more likely to make inaccurate measurements.

Btw, an echocardiogram is also ultrasound. I've seen more than one real life case where the results were way wrong, in which instance they either have a very experienced MD redo it or else they switch to a more accurate type of scan (MUGA, which uses radiation not sound).
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