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Lymph node open biopsy results
Hey again, just spoke with the ENT at the follow up. He DIDNT take the 3cm lymph node on the left that just changed given how deep it was but he said the one they took was close just under the muscle. Of the nodes they seen in the area they cut (left submandibular region near one of the big boys including the one that just changed) it was the largest and while he said they didn’t measure it, it was still bigger than what they would expect a normal lymph node to be. For him he said with how lymph nodes work and given it’s proximity and size whatever is going on in the real big boys should be going on in the one they took too. Does that ring true?
Ultimately the lymph node came back as benign. No signs of granulomas or anything like that but they did say the results ‘indicate normal reactive lymph node’ what would show that?
Regardless this is a huge relief. I wish they could have found some evidence of what’s occurring in them even if harmless just for answers but I’m certainly not going to complain. The ENT was very helpful and understanding the entire time. The only thing that surprised me was that he wasn’t telling me to go home and not to worry, he essentially said that if anything changes let him know and they can ultrasound again or take necessary action but that he doesn’t believe that’s necessary given it was barely over the fence for doing the procedure at all before and now it’s come back as benign.
Does that imply these extractions don’t necessarily rule out lymphomas wtc? Maybe I’m just overthinking this and he was just putting on his doctors spiel and anticipating continued anxiety on my part, if I’m reading too much into his comments don’t be afraid to tell me to just calm down here.
Anyway pretty much as stated, they took out a larger than average lymph node in the region of the really big guys, it came back as benign. That very much likely would speak for the others right? Also with lymph node extraction it detects even low grade easy to miss malignancies with strong confidence right? The odds of something being in the node but not detected would be next to nill right?
Ultimately the lymph node came back as benign. No signs of granulomas or anything like that but they did say the results ‘indicate normal reactive lymph node’ what would show that?
Regardless this is a huge relief. I wish they could have found some evidence of what’s occurring in them even if harmless just for answers but I’m certainly not going to complain. The ENT was very helpful and understanding the entire time. The only thing that surprised me was that he wasn’t telling me to go home and not to worry, he essentially said that if anything changes let him know and they can ultrasound again or take necessary action but that he doesn’t believe that’s necessary given it was barely over the fence for doing the procedure at all before and now it’s come back as benign.
Does that imply these extractions don’t necessarily rule out lymphomas wtc? Maybe I’m just overthinking this and he was just putting on his doctors spiel and anticipating continued anxiety on my part, if I’m reading too much into his comments don’t be afraid to tell me to just calm down here.
Anyway pretty much as stated, they took out a larger than average lymph node in the region of the really big guys, it came back as benign. That very much likely would speak for the others right? Also with lymph node extraction it detects even low grade easy to miss malignancies with strong confidence right? The odds of something being in the node but not detected would be next to nill right?
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COMMUNITY LEADER
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So the biggest nodes are the jugliodiastic nodes, (very deep corners behind jawline) a few other deep cervical/posterior cervical nodes as well not as large though. The node he took they took from directly behind my left mandible, the surgery report it says they moved the mandible out the way and found this node and removed it. Reading I’m not entirely sure that node would be downwind of the jugular ones would they? Sure they are close proximity in pure distance (a few inches) I’m just concerned because he did NOT use an ultrasound before opening me up (I asked him) and the sonographers said it was my jugliodiastic nodes but just put ‘prominently enlarged nodes in submandibular region which is what he based it on. He said the node was the largest in the area he opened, which again really seems concerning this was NOT part of the flow that is enlarged. Unless I’m wrong and that is the same river flow. Do you know how the flow works in that area?
Even beyond that is biopsy of a node downstream being benign confident enough to clear the big ones of cancer? Even a low grade lymphoma? I’m just concerned because they say FNA has about a 60% chance of finding lymphoma, the point of extraction is much more certain odds of ruling something out. But if we took a node that only had 60% odds of showing something it was all for not you know?
Then it comes back to the node itself too, 10mm by 7mm by 6mm, that doesn’t sound enlarged does it’s? It’s a jaw node and I know those are more rounded and I’ve always heard healthy nodes are bean sized, well that’s bean sized, so on his report he took a “moderately enlarged” node. How can that even be considered enlarged when sonography flat out told me that until it was 1.5cm they didn’t even consider it enlarged? It just seems so inconsistent and like no one really agrees. Had he pulled one of my several 2cm nodes I wouldn’t be worried, even one of my several 1.5-2.0 cm nodes. Logic would say that IF a node is enlarged then whatever antagonizing agent, benign or otherwise, that is in the big guys would be in that node with near certainty too. However is 1cm by 7mm even enlarged at all?? If so it’s not by much is it?
Sorry to keep bothering you I’m just really trying to make sense if the decisions made, I don’t want to doubt the doctor but taking submandibular when it was cervical and jugular nodes, not using an ultrasound before surgery and then taking ‘the biggest one in the area’ just don’t inspire confidence…should I get a second opinion on this or am I just worrying too much. I just feel like all that happened to take a boring regular node. Unless that is objectively enlarged. I just felt like this was supposed to give 99% certainty and if ut didn’t get an enlarged node it feels like another needle biopsy.
Even beyond that is biopsy of a node downstream being benign confident enough to clear the big ones of cancer? Even a low grade lymphoma? I’m just concerned because they say FNA has about a 60% chance of finding lymphoma, the point of extraction is much more certain odds of ruling something out. But if we took a node that only had 60% odds of showing something it was all for not you know?
Then it comes back to the node itself too, 10mm by 7mm by 6mm, that doesn’t sound enlarged does it’s? It’s a jaw node and I know those are more rounded and I’ve always heard healthy nodes are bean sized, well that’s bean sized, so on his report he took a “moderately enlarged” node. How can that even be considered enlarged when sonography flat out told me that until it was 1.5cm they didn’t even consider it enlarged? It just seems so inconsistent and like no one really agrees. Had he pulled one of my several 2cm nodes I wouldn’t be worried, even one of my several 1.5-2.0 cm nodes. Logic would say that IF a node is enlarged then whatever antagonizing agent, benign or otherwise, that is in the big guys would be in that node with near certainty too. However is 1cm by 7mm even enlarged at all?? If so it’s not by much is it?
Sorry to keep bothering you I’m just really trying to make sense if the decisions made, I don’t want to doubt the doctor but taking submandibular when it was cervical and jugular nodes, not using an ultrasound before surgery and then taking ‘the biggest one in the area’ just don’t inspire confidence…should I get a second opinion on this or am I just worrying too much. I just feel like all that happened to take a boring regular node. Unless that is objectively enlarged. I just felt like this was supposed to give 99% certainty and if ut didn’t get an enlarged node it feels like another needle biopsy.
Also it says cyclin D 1 is positive in scatter T cells… reading up that sounds bad doesn’t it?
Also this states lymph nodes up to 12mm are totally healthy normal resting nodes and jaw nodes tend to be larger… the node he took wasn’t enlarged at all was it? I feel like he was just placating rather than making an attempt at a truly enlarged node.
https://radiologykey.com/lymph-nodes-5/
https://radiologykey.com/lymph-nodes-5/
COMMUNITY LEADER
"Also this states lymph nodes up to 12mm are totally healthy normal resting nodes"
Can you quote that? I don't see that on your cited page.
Can you quote that? I don't see that on your cited page.
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https://www.healthychildren.org/English/tips-tools/symptom-checker/Pages/symptomviewer.aspx?symptom=Lymph+Nodes+-+Swollen
Sorry that’s on this one, even on the cited page it says anything up to a CM has very little diagnostic value.
The biggest nodes are the jugliodiastic nodes (both now well over 3cm long by 2cm wide) and more superficial and deep cervical which are enlarged. From what I understand that’s an entire different branch than submandibular isn’t it? He said he took the biggest he seen but isn’t it concerning he didn’t use ultrasound beforehand? Is it even considered enlarged? Doesn’t it kind of seem like this biopsy was useless?
Sorry that’s on this one, even on the cited page it says anything up to a CM has very little diagnostic value.
The biggest nodes are the jugliodiastic nodes (both now well over 3cm long by 2cm wide) and more superficial and deep cervical which are enlarged. From what I understand that’s an entire different branch than submandibular isn’t it? He said he took the biggest he seen but isn’t it concerning he didn’t use ultrasound beforehand? Is it even considered enlarged? Doesn’t it kind of seem like this biopsy was useless?
Also what’s positive in scatter T cells mean?
I guess I’m asking if this biopsy sounds like it actually is enough to rule out lymphoma, even something low grade or if I need to seek another opinion here. I just really feel like it was handled very poorly in which node they chose. I went under assuming he was taking a 3cm node. He took a node so small I have 14 that are larger in the area. A node small enough we have to wonder if it’s enlarged at all, that doesn’t sound certain to me does it?
Please shoot straight with me, if you think I’m just letting health anxiety rule me right now and this did infact show enough to confidently say my several 2-3cm nodes are non cancerous let me know, however I’m just concerned as I feel like a fought all these years with routine size increases to get this procedure only to have them take the wrong one and it doesn’t rule anything out with certainty. If that’s more the case then I want to go back and speak to another surgeon about the situation.
I guess I’m asking if this biopsy sounds like it actually is enough to rule out lymphoma, even something low grade or if I need to seek another opinion here. I just really feel like it was handled very poorly in which node they chose. I went under assuming he was taking a 3cm node. He took a node so small I have 14 that are larger in the area. A node small enough we have to wonder if it’s enlarged at all, that doesn’t sound certain to me does it?
Please shoot straight with me, if you think I’m just letting health anxiety rule me right now and this did infact show enough to confidently say my several 2-3cm nodes are non cancerous let me know, however I’m just concerned as I feel like a fought all these years with routine size increases to get this procedure only to have them take the wrong one and it doesn’t rule anything out with certainty. If that’s more the case then I want to go back and speak to another surgeon about the situation.
"healthychildren.org"
Childrens' reactive nodes tend to get bigger than adults, IIRC.
But yes, the excised node was not that suspicious. It was just the biggest of the easily accessible nodes. It's not big, but still it was the biggest.
I'll write more on that later.
Childrens' reactive nodes tend to get bigger than adults, IIRC.
But yes, the excised node was not that suspicious. It was just the biggest of the easily accessible nodes. It's not big, but still it was the biggest.
I'll write more on that later.
COMMUNITY LEADER
"Also it says cyclin D 1 is positive in scatter T cells…"
Well now, that might be promising, Spartan. I'd want to know why that is there.
Here's my speculation: the path looked for it because cyclin D1 is found to be *overexpressed* in certain cancers/lymphomas. Meaning there's lots of it. But you apparently don't have lots, you just have some scattered about.
Let's say that cyclin D1 is like a growth factor, it makes cells multiply. So what benign not-cancer conditions exist, where there is some, but not a lot, of cyclin D1? Does every reactive node have it? I don't know, but I'd guess not. If it's true that having some cyclin D1 is not usual in reactive nodes, then that might be a big clue as to what not-cancer effect is making your nodes enlarge.
Well now, that might be promising, Spartan. I'd want to know why that is there.
Here's my speculation: the path looked for it because cyclin D1 is found to be *overexpressed* in certain cancers/lymphomas. Meaning there's lots of it. But you apparently don't have lots, you just have some scattered about.
Let's say that cyclin D1 is like a growth factor, it makes cells multiply. So what benign not-cancer conditions exist, where there is some, but not a lot, of cyclin D1? Does every reactive node have it? I don't know, but I'd guess not. If it's true that having some cyclin D1 is not usual in reactive nodes, then that might be a big clue as to what not-cancer effect is making your nodes enlarge.
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Everything I read about cyclin D1 says it’s a major risk in many B cell lymphomas nothing else is noted however. So how was this read benign with those there, why wasn’t this inconclusive at the very least? This tiny node may have only had a little. What does that say about the big ones?
Also it just says “cyclin D1 is positive in scatter T cells”
Again no flow cytometry results yet… wondering if they didn’t do it.
Where would I even go to ask about cyclin D1? The ENT has washed his hands if it. I highly doubt any hematologist would see me with benign excision on my chart as they wouldn’t see me before. Even though it was a dubious decision.
Honestly it sounds like this whole excision was a bust doesn’t it? I know you said I may be worried they got the wrong one but that wouldn’t have been true if they got a 3cm node, even a 2cm node or one nearly 2cm node. However they got a 10mm node that likely wasn’t even enlarged. It just doesn’t seem like it was a successful biopsy is giving medical certainty about it being benign does it?
Also it just says “cyclin D1 is positive in scatter T cells”
Again no flow cytometry results yet… wondering if they didn’t do it.
Where would I even go to ask about cyclin D1? The ENT has washed his hands if it. I highly doubt any hematologist would see me with benign excision on my chart as they wouldn’t see me before. Even though it was a dubious decision.
Honestly it sounds like this whole excision was a bust doesn’t it? I know you said I may be worried they got the wrong one but that wouldn’t have been true if they got a 3cm node, even a 2cm node or one nearly 2cm node. However they got a 10mm node that likely wasn’t even enlarged. It just doesn’t seem like it was a successful biopsy is giving medical certainty about it being benign does it?
https://imgur.com/a/J4iRiGe
There’s the actual biopsy report
There’s the actual biopsy report
COMMUNITY LEADER
They would probably say that both methods are equivalent. I wouldn't argue with that. The fluorescence microscopy does have the advantage of showing where the cells are at - and yours are where they belong.
I don't think they need to do both. What was done is fine.
I don't think they need to do both. What was done is fine.
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You still are confident the little node they took speaks for the large ones? Remember the one node went from 2-3cm recently and the other went past 3cm last year. I just am worried the little 10mm is too small/unaffected by whatever is in the big boys. You’re confident it would show though? Even something indolent?
COMMUNITY LEADER
... the gross exam done by the initial pathologist.
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So the 10mm node would still be viable even with such little tissue? Are we very confident that a node that size will speak for the big ones being so close (as in are we confident it rules out cancer in the big boys too) also the report says benign reactive. When they say reactive are they seeing something to indicate that?
COMMUNITY LEADER
They would send out an adequate amount. Some gets stored, and that's how a future 2nd opinion can be had.
"Just trying to understand it all."
Bravo :)
First is 'gross' exam, just by eye.
Next, slices are taken and looked at with a microscope. Various stains are used, which help to e.g. tell one type of cell from another.
Then comes fluorescence. Imagine a huge number of tiny tiny manufactured darts. Each type can only stick to one particular type of target. The tail feathers glow under UV light, so that the darts can be easily seen.
For fluorescence microscopy, they start with a thin slice of your node. Then over that they put a solution with huge numbers of tiny darts manufactured to stick only to something called BCL2 *that's the bad thing, which is found on the surface of certain cancer cells). Then rinse. With the microscope, they can now see wherever those darts stuck. Just like the type of photograph of the earth at night taken from way above, they can see the specks of light.
For flow cytometry, it is the same except the sample is not a whole slice, it gets broken up into individual cells. The cells are put in a flow past a light sensorm, 1 by 1 but large numbers are done because the flow goes so quick. This way is more likely to spot individual specks if they exist. It's more comprehensive, just as a resection biopsy is more comprehensive than a needle biopsy.
As for shrinking? The overall size should be reported as part of the gross exam.
"Just trying to understand it all."
Bravo :)
First is 'gross' exam, just by eye.
Next, slices are taken and looked at with a microscope. Various stains are used, which help to e.g. tell one type of cell from another.
Then comes fluorescence. Imagine a huge number of tiny tiny manufactured darts. Each type can only stick to one particular type of target. The tail feathers glow under UV light, so that the darts can be easily seen.
For fluorescence microscopy, they start with a thin slice of your node. Then over that they put a solution with huge numbers of tiny darts manufactured to stick only to something called BCL2 *that's the bad thing, which is found on the surface of certain cancer cells). Then rinse. With the microscope, they can now see wherever those darts stuck. Just like the type of photograph of the earth at night taken from way above, they can see the specks of light.
For flow cytometry, it is the same except the sample is not a whole slice, it gets broken up into individual cells. The cells are put in a flow past a light sensorm, 1 by 1 but large numbers are done because the flow goes so quick. This way is more likely to spot individual specks if they exist. It's more comprehensive, just as a resection biopsy is more comprehensive than a needle biopsy.
As for shrinking? The overall size should be reported as part of the gross exam.
2 Comments
Okay so you think it really was only 10mm and that a part hadn’t already been sent to Mayo? Just wondering since it says ‘sent’ past tense but could just be professional jargon.
That whole area is still totally numb but the surgeon said that’s totally normal. With the incision sensory nerves are cut and typically take weeks to even a few months to totally recover, although he said the incision itself may always be a little funny feeling.
I guess I’m just wanting to be sure that node was big enough to get what they needed, I’m just concerned it wouldn’t speak for the big boys further up the food chain. (The one they took was probably 3-4ish inches away from 3cm guy) but you’re confident that it should speak for the whole area right? Even given it’s much more normal size? I’m disappointed we didn’t find SOME reason they were enlarged to explain it but I want to know if this is a condiment enough sample to truly write off malignancy at this point.
That whole area is still totally numb but the surgeon said that’s totally normal. With the incision sensory nerves are cut and typically take weeks to even a few months to totally recover, although he said the incision itself may always be a little funny feeling.
I guess I’m just wanting to be sure that node was big enough to get what they needed, I’m just concerned it wouldn’t speak for the big boys further up the food chain. (The one they took was probably 3-4ish inches away from 3cm guy) but you’re confident that it should speak for the whole area right? Even given it’s much more normal size? I’m disappointed we didn’t find SOME reason they were enlarged to explain it but I want to know if this is a condiment enough sample to truly write off malignancy at this point.
Because I was just wondering if they essentially meant the chunk they got was 10mm AFTER a piece had already been sent to Mayo meaning the initial node was larger. I’m just so concerned that it being so relatively small to all those I have over a CM, over 2cm and even over 3cm means it wouldn’t rule out something in the big folks since it’s a couple inches away. But you’re pretty confident it would? Even something lower grade (which I assume IF something was there it would have to be low grade given years with no symptoms.
COMMUNITY LEADER
The size of the resected node? It's larger than a 'resting' node, but typical for a normally reactive node.
Apparently, they chose that one because the risk (of harming a nerve or blood vessel) was much greater for the big ones than for this smaller but more available one.
That report looks like 'fluorescence microscopy', not flow cytometry. It's sort of the same approach. It's saying that the different types of immune cells are in their respective expected places, not growing all over as would be in a cancer. It also didn't spot any cancer cells (no BCL2).
They might still do flow cytometry. I dunno.
"Even with its normal size would you still expect it to rule out something in the larger nodes given it’s in the same area?"
Yes, that's what would be expected. Bad cells would have spread to the node that was taken. If you get a flow cytometry report, let me know.
Apparently, they chose that one because the risk (of harming a nerve or blood vessel) was much greater for the big ones than for this smaller but more available one.
That report looks like 'fluorescence microscopy', not flow cytometry. It's sort of the same approach. It's saying that the different types of immune cells are in their respective expected places, not growing all over as would be in a cancer. It also didn't spot any cancer cells (no BCL2).
They might still do flow cytometry. I dunno.
"Even with its normal size would you still expect it to rule out something in the larger nodes given it’s in the same area?"
Yes, that's what would be expected. Bad cells would have spread to the node that was taken. If you get a flow cytometry report, let me know.
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Thanks Ken! Also I did notice one thing though. Note on the description section it says the size, segments etc then says ‘a portion is sent to Mayo for flow cytometry’ could that mean that they only got a piece of the node? Maybe another chunk was already away to Mayo straight from the operation and it was bigger than that initially? Also would a sample like this potentially shrink after removal due to fluids moving or being treating with a preserving agent? Just trying to understand it all. But I’m wondering if they got the node after a small piece was already sent to Mayo. Would the surgical report show size upon removal?
This immuno fluorescent deal, is that as reliable as flow cytometry?
This immuno fluorescent deal, is that as reliable as flow cytometry?
JOHN P. LEE, D.O. Gross Description Labeled left submandibular lymph node received fresh is a 10 x 7 x 6 mm pink-tan lymph node. The lymph node is serially sectioned and a portion is sent to Mayo for flow cytometry. T/E, blocks 1A1B CHRISTINE A. FRIDAY Billing Fee Code(s): 1: GMC3 - 88305, CD20 - 88342, IHC 88341, IHC 88341, IHC 88341, IHC 88341, IHC 88341, IHC 88341, IHC 88341 SNOMED Code(s): 1: P1100 T08000 T08160 ACCESSION CoPath Report Date: 05/09/2022 12:41
Microscopic examination is performed and supports the diagnosis. Sections show normal lymph node architecture. CD3 and CD5 highlight interfollicular T cells. The B cells are highlighted by CD20. The germinal centers are highlighted by BCL6 and CD10. The germinal centers are negative for BCL2. CD23 highlights the dendritic meshwork of the germinal centers. Cyclin D1 is positive in scatter T cells
That’s the test description. Is that stating the flow cytometry results or is that separate from this? I just see where a chunk was sent to Mayo.
Microscopic examination is performed and supports the diagnosis. Sections show normal lymph node architecture. CD3 and CD5 highlight interfollicular T cells. The B cells are highlighted by CD20. The germinal centers are highlighted by BCL6 and CD10. The germinal centers are negative for BCL2. CD23 highlights the dendritic meshwork of the germinal centers. Cyclin D1 is positive in scatter T cells
That’s the test description. Is that stating the flow cytometry results or is that separate from this? I just see where a chunk was sent to Mayo.
UPDATE: the lymph node they took was only 10 by 7 by 6 MM. I’m so confused by this. Why would they take that one when I had so many over a CM long? Why would they take that one when I have that are now over 3 CM in length that BOTH increased in size over the course of 3 years?
I just feel defeated. I feel like we did all this now only to have not gotten the right one. I don’t get it, I don’t get why he took that one.
Even with its normal size would you still expect it to rule out something in the larger nodes given it’s in the same area? That size node doesn’t seem enlarged does it?
I just feel defeated. I feel like we did all this now only to have not gotten the right one. I don’t get it, I don’t get why he took that one.
Even with its normal size would you still expect it to rule out something in the larger nodes given it’s in the same area? That size node doesn’t seem enlarged does it?
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You personally don't have any cancer. But in actual cancer, the cells are not organized as in normal tissue. So individual cancer cells can just break off and float away down the lymphatic vessels. Then they can get trapped in nodes.
Let's say I am at a stream and I pour in some dye. If you go upstream from me and take a sample, you won't find any dye. But if you go downstream, that's your best chance of finding dye. If you go ten yards downstream, you'll find dye. If you go one mile downstream, you probably won't find any.
So if you can, find out if the resected node was downstream, and how far.