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ENT refusing referral despite acknowledging node getting bigger
Hello again. So seen my ENT again regarding the node going from 2.6 by 0.8 by 2.4 to 3.1 by 1.1 by 1.7 and she said my even more recent US showed 3.1 by 0.7 by I think 2. Something again. Other nodes appear similar to before. Anyway she said she’s not worried about the size and says they feel normal but can’t feel the big boy, the grape I feel she says is my jugular bulb but I find that hard to believe since well, the jugliodiastic node is right there too and that’s the one they say is enlarged that big. Anyway she says usually even low grade lymphomas will show on ultrasound and that on palpating they feel soft etc so she’s still not worried. She actually did a calculation of volume based on measurements and said the big boy is nearly identical in overall volume just shape shifted a bit which she said can happen given lymph nodes are soft tissue and often the probes push on them and can move them a bit.
Anyway I’m at a loss here. Is this worrying? It’s been 3 years in November with these nodes since my terrible chest cold and no answers. No real changes beyond the one getting bigger though. Should I just let this go?
She’s willing to do another yearly check up more for my peace of mind but did say that in their setting the shortest axis (in this case the 0.7cm) is considered short axis on their ultrasounds. Is that true? Also what she mentioned about volume, is that reassuring? It’s slightly more volume but is it true that there’s likely no real growth since the overall volume is still mostly the same?
Anyway I’m at a loss here. Is this worrying? It’s been 3 years in November with these nodes since my terrible chest cold and no answers. No real changes beyond the one getting bigger though. Should I just let this go?
She’s willing to do another yearly check up more for my peace of mind but did say that in their setting the shortest axis (in this case the 0.7cm) is considered short axis on their ultrasounds. Is that true? Also what she mentioned about volume, is that reassuring? It’s slightly more volume but is it true that there’s likely no real growth since the overall volume is still mostly the same?
COMMUNITY LEADER
You can have low systemic inflammation, yet still have specific small areas of high inflammation, like in a node.
COMMUNITY LEADER
"mildly low B12 and MPV"
Did we ever talk about you taking a B12 supplement? I recall you're not a vegan, but maybe we discussed B12.
Low B12 can cause low MPV. But then we'd want to wonder *why* you have almost lowish B12.
I know we discussed that low WBC is not a concern to a doc unless you get constant colds etc, which you don't. Low WBC generally means low systemic inflammation, which is good. But we can and should wonder why yours is lowish, yes.
Did we ever talk about you taking a B12 supplement? I recall you're not a vegan, but maybe we discussed B12.
Low B12 can cause low MPV. But then we'd want to wonder *why* you have almost lowish B12.
I know we discussed that low WBC is not a concern to a doc unless you get constant colds etc, which you don't. Low WBC generally means low systemic inflammation, which is good. But we can and should wonder why yours is lowish, yes.
1 Comments
Ever have a homocysteine blood test?
COMMUNITY LEADER
"Also she said I’m feeling the carotid bulb..."
That would probably be bilateral though, right? Yours is felt on one side only.
That would probably be bilateral though, right? Yours is felt on one side only.
1 Comments
No the big ones I feel on both sides, it’s the left posterior small chains that I only feel on the left side
COMMUNITY LEADER
' “Suggests reactive etiology” again. Could that be true with no pain or tenderness?'
Yes. The biochemicals like bradykinin and Substance-P are different than the ones that mainly cause swelling and fibrosis.
"One thing of note; that terrible chest cold that caused these initially and that I needed antibiotics for, I haven’t had a cold since then. That was 3 years ago. I usually get 2 a year."
You're immune system is probably hyper now. There is a related idea that eating mushrooms (a fungus) will activate the immune system and thereby possibly maybe perhaps help against infections and even cancer. There was an approach long ago called Coley Toxins.
"no one has ever tried giving me more antibiotics even for a week"
You can outright ask them, I would. But an Abx has to match the pathogen and also be capable of getting into the location where the pathogen is at. So you have to decide if you think the occult infection is in the lungs or in the base of a tooth.
Another option is an anti-inflammatory like prednisone, to see if any nodes reduce in size.
"Is it possible some tiny remnant of the virus or infection could still just be stuck in limbo and my body has quarantined it so to speak?"
Absolutely. For being quarantined, that would be granulomas. Granulomas can break down and release what was inside - e.g., that happens when powerful anti-inflammatories (e.g. anti-TNF or anti-IL6) are given to somebody with latent TB and then they have active TB. For the base of a tooth, that would involve a location inaccessible to immune cells but still capable of leaking cytokines out.
Some bacteria go into a dormant state.
Take a quick look at this, which has to do with chronic Lyme. It's somewhat parallel to you, I'm not saying you have Lyme. The theories for chronic Lyme mostly center around either (1) there still being live Lyme bacteria present, even after initial Abx, or (2) the Lyme created an immune system dysfunction that persists even after all the Lyme is dead.
https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/
Chronic Lyme is a big topic for sufferers, though not well understood yet. One or more Abx might even be given for months. We'll keep in mind that Abx do not usually affect viruses, and anti parasite drugs are different still.
Yes. The biochemicals like bradykinin and Substance-P are different than the ones that mainly cause swelling and fibrosis.
"One thing of note; that terrible chest cold that caused these initially and that I needed antibiotics for, I haven’t had a cold since then. That was 3 years ago. I usually get 2 a year."
You're immune system is probably hyper now. There is a related idea that eating mushrooms (a fungus) will activate the immune system and thereby possibly maybe perhaps help against infections and even cancer. There was an approach long ago called Coley Toxins.
"no one has ever tried giving me more antibiotics even for a week"
You can outright ask them, I would. But an Abx has to match the pathogen and also be capable of getting into the location where the pathogen is at. So you have to decide if you think the occult infection is in the lungs or in the base of a tooth.
Another option is an anti-inflammatory like prednisone, to see if any nodes reduce in size.
"Is it possible some tiny remnant of the virus or infection could still just be stuck in limbo and my body has quarantined it so to speak?"
Absolutely. For being quarantined, that would be granulomas. Granulomas can break down and release what was inside - e.g., that happens when powerful anti-inflammatories (e.g. anti-TNF or anti-IL6) are given to somebody with latent TB and then they have active TB. For the base of a tooth, that would involve a location inaccessible to immune cells but still capable of leaking cytokines out.
Some bacteria go into a dormant state.
Take a quick look at this, which has to do with chronic Lyme. It's somewhat parallel to you, I'm not saying you have Lyme. The theories for chronic Lyme mostly center around either (1) there still being live Lyme bacteria present, even after initial Abx, or (2) the Lyme created an immune system dysfunction that persists even after all the Lyme is dead.
https://www.hopkinslyme.org/lyme-disease/treatment-and-prognosis-of-lyme-disease/
Chronic Lyme is a big topic for sufferers, though not well understood yet. One or more Abx might even be given for months. We'll keep in mind that Abx do not usually affect viruses, and anti parasite drugs are different still.
2 Comments
bradykinin and Substance-P are the pain ones
I have had routinely mildly low WBC this whole time as well as routinely mildly low B12 and MPV... would that have any correlation? I know docs have said I’ve always been in low normal range for WBC though
COMMUNITY LEADER
Hi, Spartan.
"...I feel she says is my jugular bulb but I find that hard to believe since well, the jugliodiastic node is right there too and that’s the one they say is enlarged that big."
I agree with you.
"She actually did a calculation of volume based on measurements"
I've seen that done for overall tumor burden (with many tumors), and yes it would also fit here.
"just shape shifted a bit which she said can happen given lymph nodes are soft tissue and often the probes push on them and can move them a bit."
That sounds reasonable and I can't think of any other explanation. It's actually a clever idea from her. Nodes wouldn't likely grow in one direction and simultaneously shrink in another direction.
"Is [all of] this worrying?"
Nope, but the size was enough to then consider other factors. If the US says the internal architecture is good and there are no signs (calcium flecks, wrong blood flow on Doppler, cystic areas, etc) that there is cancer, then there should be no worry.
"the shortest axis (in this case the 0.7cm) is considered short axis on their ultrasounds. Is that true?"
I disagree there. Let's say you have a 3D sono that shows 3cm x 2cm x 1cm. Then the next day you have a 2D sono which shows 3cm x 2cm. The "short axis" didn't grow from 1cm to 2cm.
"Anyway she says usually even low grade lymphomas will show on ultrasound..."
Yes.
"Also what she mentioned about volume, is that reassuring?"
Yep.
"It’s slightly more volume but is it true that there’s likely no real growth since the overall volume is still mostly the same?"
Yes.
Also, let's consider this: any fibrosis inside the node also contributes to size. For instance, if you have a node that would be 2.5cm in length because of being reactive alone, but then you also have .5cm of fibrosis in there, then the overall total length seems alarmingly big at 3.0cm. If a year goes by, and there is then .7cm of fibrosis, then the overall length becomes 3.2cm. Nodes can only get so big by being reactive alone, but maybe there is no limit to how much fibrosis can accumulate inside.
I do think that your nodes are reactive from some upstream location secreting inflammatory biochemicals. They are not dormant. But also they have fibrosis inside.
No, there is still no reason to think there is cancer inside.
"...I feel she says is my jugular bulb but I find that hard to believe since well, the jugliodiastic node is right there too and that’s the one they say is enlarged that big."
I agree with you.
"She actually did a calculation of volume based on measurements"
I've seen that done for overall tumor burden (with many tumors), and yes it would also fit here.
"just shape shifted a bit which she said can happen given lymph nodes are soft tissue and often the probes push on them and can move them a bit."
That sounds reasonable and I can't think of any other explanation. It's actually a clever idea from her. Nodes wouldn't likely grow in one direction and simultaneously shrink in another direction.
"Is [all of] this worrying?"
Nope, but the size was enough to then consider other factors. If the US says the internal architecture is good and there are no signs (calcium flecks, wrong blood flow on Doppler, cystic areas, etc) that there is cancer, then there should be no worry.
"the shortest axis (in this case the 0.7cm) is considered short axis on their ultrasounds. Is that true?"
I disagree there. Let's say you have a 3D sono that shows 3cm x 2cm x 1cm. Then the next day you have a 2D sono which shows 3cm x 2cm. The "short axis" didn't grow from 1cm to 2cm.
"Anyway she says usually even low grade lymphomas will show on ultrasound..."
Yes.
"Also what she mentioned about volume, is that reassuring?"
Yep.
"It’s slightly more volume but is it true that there’s likely no real growth since the overall volume is still mostly the same?"
Yes.
Also, let's consider this: any fibrosis inside the node also contributes to size. For instance, if you have a node that would be 2.5cm in length because of being reactive alone, but then you also have .5cm of fibrosis in there, then the overall total length seems alarmingly big at 3.0cm. If a year goes by, and there is then .7cm of fibrosis, then the overall length becomes 3.2cm. Nodes can only get so big by being reactive alone, but maybe there is no limit to how much fibrosis can accumulate inside.
I do think that your nodes are reactive from some upstream location secreting inflammatory biochemicals. They are not dormant. But also they have fibrosis inside.
No, there is still no reason to think there is cancer inside.
2 Comments
I appreciate your comment, even my anxiety riddled brain has to admit at 3 years with no major changes cancer is exceedingly unlikely at this point.
(Also looking at the images the 0.7 is the short axis or at least the straight across the middle length. Meaning that while wide it’s still longer by a good margin) fatty helum present in all it said. They did Doppler and everything else and not concerning notes. “Suggests reactive etiology” again. Could that be true with no pain or tenderness? I’m trying to figure out if there is something there. One thing of note; that terrible chest cold that caused these initially and that I needed antibiotics for, I haven’t had a cold since then. That was 3 years ago. I usually get 2 a year. I’ve read a bit about very mild latent infections and seen comments about how a sign can occasionally be lack of certain virus or allergy issues due to a chronically heightened immune reaction (even if mild) and no one has ever tried giving me more antibiotics even for a week despite them saying I was likely taken off them too soon in the first place. Is it possible some tiny remnant of the virus or infection could still just be stuck in limbo and my body has quarantined it so to speak? Should I ask about trying antibiotics? I’ve seen others comment thats the first thing doctors try for their nodes but mine never brought it up
(Also looking at the images the 0.7 is the short axis or at least the straight across the middle length. Meaning that while wide it’s still longer by a good margin) fatty helum present in all it said. They did Doppler and everything else and not concerning notes. “Suggests reactive etiology” again. Could that be true with no pain or tenderness? I’m trying to figure out if there is something there. One thing of note; that terrible chest cold that caused these initially and that I needed antibiotics for, I haven’t had a cold since then. That was 3 years ago. I usually get 2 a year. I’ve read a bit about very mild latent infections and seen comments about how a sign can occasionally be lack of certain virus or allergy issues due to a chronically heightened immune reaction (even if mild) and no one has ever tried giving me more antibiotics even for a week despite them saying I was likely taken off them too soon in the first place. Is it possible some tiny remnant of the virus or infection could still just be stuck in limbo and my body has quarantined it so to speak? Should I ask about trying antibiotics? I’ve seen others comment thats the first thing doctors try for their nodes but mine never brought it up
Also she said I’m feeling the carotid bulb not the jugular which to be fair does seem to be palpable in most from what I’m reading
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