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Big breakthrough on US reading

So I recently seen the new ENT who was very kind and helpful, she did not say no to a biopsy however did say if she did it she wouldn’t really know which one to go for as my nodes are all so normal. She went through the US images and videos right infront of me and said she seen the normal hilum and blood flow on each. She also said the one radiology said was 2.9 cm actually looks a lot like two nodes stuck together making it look longer (which makes sense as the right side is where I feel those two stuck together and I’ve had those forever)
And a huge shock/relief was on the left side she said in September I had a node on the left side 2.5 cm long and in December it had gone to 1.7 cm, so still large but from what I understand shrinking certainly isn’t a trait of any cancer no matter how slow growing. All being said this was a very relief filled visit. We are doing a follow up in a few months and she agreed to routine US for peace of mind but given what I heard and seen this does put me at ease. All the nodes that are palpable are anywhere from 1mm to 8mm she said on the US.

I guess my only real continuing question, is what causes nodes to be stuck together? She said sometimes they are just neighbors clustered naturally in some people and I’ve read often matted nodes are concerning. However I have genuinely had these for years. If not forever I couldn’t tell you for sure. So I’m not really worried just curious.

Any other thoughts on the whole visit are greatly appreciated!
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1081992 tn?1389903637
COMMUNITY LEADER
"I should insist my weight is healthy"
Okay, got it. Actuarial tables would agree with you. And you don't avoid saturated fat, IIRC.

"From what I understand immunodeficiency is hallmarkrd by easily getting colds or infections etc"
Yes.


"As far as the post viral deal my doctor checked bloods for the entire EB family and everything came back negative. Can that happen with other upper respiratory infections as well?"
In a post viral syndrome, your immune system changes and becomes more hyperactive. That's not the same as chronic or residual infection.


"The illness I had was rough on everyone who got it"
Okay, I remember that now: the pathogen was especially virulent.


I'll say some very quick words about coronavirus: although there is a lot of hype, there is also real danger --- especially to people who are elderly and frail (not you), but also probably to those who have a history of severe immune reaction in the lungs to an infection. In coronavirus, what kills is the person's own immune system going overboard. It's called ARDS: Acute Respiratory Distress Syndrome.

Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"I’m just so skinny I can feel them. (I’m 5’10 and 140lbs so I am very light framed)"
If you don't mind my saying, I believe you'd be all around healthier by packing on some muscle mass, and even a thin fat layer. Have you tried?
Helpful - 0
2 Comments
I’ve tried but it never got me much. Pretty much every male in my family has had a very light lean frame until elderly years. So it’s not really surprising or unique for me.

As for the immunodeficiency we’ve touched on it before. But I haven’t had any indication to think that’s present. My WBC are always on the low normal range even getting flagged a couple times (just barely) and my doctor and the hematologists have said that’s common in young people and even a sign of good health as long as you don’t get sick easy etc (and I don’t) I get sick once or twice a year and am sick maybe 5-7 days, no frequent infections etc and often times my fiancé will be ill and I’ll be around her a lot and never catch it. From what I understand immunodeficiency is hallmarkrd by easily getting colds or infections etc


As far as the post viral deal my doctor checked bloods for the entire EB family and everything came back negative. Can that happen with other upper respiratory infections as well? The illness I had was rough on everyone who got it, my coworker was gone with bronchitis, needed anti biopics, I got sick and needed anti biopics as well, my grandmother got it and broke a rib she coughed so hard and she needed antibiotics as well, my fiancée caught it and needed anti biotics. So whatever it was it wasn’t a run of the mill cold, it was rough and I remember the doctors started treating everyone with a cough with antibiotics in our area.
I should insist my weight is healthy, doctors have noted my actual bone size to my waist is smaller than normal by a small margin and I’m not skin in bones, I work out and run frequently and eat well (but do have the occasional zebra cake) so don’t think I’m emancipated by any means, honestly like I said every male from my fathers side is very lean built and compact.
1081992 tn?1389903637
COMMUNITY LEADER
"Like I said it was as sick as I’ve ever felt, I coughed up blood, could hardly walk, had extremely high fevers every night etc until the antibiotics and even after them a few weeks there was a small pocket of fluid on my lung (which went away the next week) but the cough lingered for about 4-5 months.... Is it possible for something like that to linger and put up a minor fight as even a remnant?"

Good point, my friend. That's one possibility, such as chronic EBV - which enlarges nodes, IIRC. Another is that the infection altered your immune system so that you subsequently have a post viral syndrome, or more generally a "post infectious syndrome".

Another is that you might have some sort of immunodeficiency. Have we discussed that?


"...I chose to spend a day freezing in the cold helping my fiancée workout a horse"
You do rugged outdoor stuff? Bravo :) Maybe just a little more prudently, though.


Speaking of 'prudently', would you care to hear an observation about you and possible future coronavirus exposure?
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1081992 tn?1389903637
COMMUNITY LEADER
"I understand, obviously I understand there are exceptions but hematology said that with my nodes under such close scrutiny with multiple US’s etc they would almost certainly still have scene some noticeable growth even in follicular or another indolent lymphoma. Is it safe to assume that much is true?"
Yes, very much so. And even if a person has super slow growing lymphoma, it wouldn't be treated at all - so it would be almost moot and shouldn't be worried about, just loosely watched.

"I see, [effacement is] something you’d expect to see even in a low grade malignancy at this point then as well?"
Right, it happens the same in any lymphoma, only the rate would be different.




Helpful - 0
2 Comments
I see, my doctor pcp also said about very slow growing nodes like you have saying it’s something they would just watch still, I hope he isn’t saying that is likely at all.

Is it at all possible my body is still fighting that terrible infection I had over a year ago? Like I said it was as sick as I’ve ever felt, I coughed up blood, could hardly walk, had extremely high fevers every night etc until the antibiotics and even after them a few weeks there was a small pocket of fluid on my lung (which went away the next week) but the cough lingered for about 4-5 months. Longer than usual for even a bad chest cold. My doctor was about to put me back on antibiotics before it went away. So whatever it was had legs (I almost wonder if it wasn’t pneumonia starting as early on in the illness I chose to spend a day freezing in the cold helping my fiancée workout a horse) and the fact there is difference in nodal size decreasing even over a year later shows that some level of recovery is happening. Is it possible for something like that to linger and put up a minor fight as even a remnant?
Also I should mention recently on a self exam I feel what appears to be a lymph node in each armpit. I don’t remember them but my self exams have never been super deep in that area and they are in specific areas hard to feel. They aren’t exactly in the same spot on each side but close to the same spot and feel very small like a tiny stretched pea, the left one feels a tiny bit larger maybe but again could just be it’s location is more forward facing. I’m not terribly worried, like I said I have several I can palpate in the groin region that feel like peas or small beans and are relatively symmetrical as well (placement and size etc) on each side and the doc’s have said that they are likely normal and I’m just so skinny I can feel them. (I’m 5’10 and 140lbs so I am very light framed)

Any thoughts? I’ll mention them on my upcoming follow up in a month or so but I’m not concerned really
1081992 tn?1389903637
COMMUNITY LEADER
"Yes actually from Mayo and another radiology department considered that one node. I should mention those two nodes together I feel certainly don’t feel two centimeters in total with my hands but I suppose depending on their location etc they could be longer in a direction that is not palpable?"
Right, going just by hand would be pretty tough to be accurate  anyway, and as you say, even looking in 2D is not completely accurate depending on orientation.

"When you say fibrosis you mean scarring similar to what is most likely happening with the ‘new’ nodes?"
Yes, but some is internal while some otherwise is external.
"Do they just get stuck when in close proximity? That doesn’t hint at something more sinister though?"
Inflammation stimulates fibrocytes to produce collagen. That can occur in benign or malignant conditions.

"Also from what you’ve mentioned before it sounds as though the fatty hilum is almost never present is a lymphoma lymph node if I understand correctly?"
Yes. Eventually, everything normal inside a cancerous node gets 'effaced'; that is, it is replaced by the monoclonal cancer cells. I think of it as looking at a slice of tomato (which has various internal structures) versus a slice of potato (wherein every cell is the same).
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1 Comments
I see, that’s something you’d expect to see even in a low grade malignancy at this point then as well?
1081992 tn?1389903637
COMMUNITY LEADER
What I'm saying is that it's a blanket statement that shouldn't be taken as a rule.   E.g., in your https://www.celgene.com/many-faces-lymphoma/

"follicular lymphoma (FL), grows slowly, with lymph nodes doubling in size approximately every six to 12 months... [but] A small fraction never require treatment".
So someone starting with a 1/2" node that goes untreated for 12 years would end up with that node being at least 1024" ?  Even if we use volume instead of length, it would still be gigantic. Are you following me on that?
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2 Comments
I understand, obviously I understand there are exceptions but hematology said that with my nodes under such close scrutiny with multiple US’s etc they would almost certainly still have scene some noticeable growth even in follicular or another indolent lymphoma. Is it safe to assume that much is true?
Because even something slow growing would still grow given how small they are I assume, noticeably in a year at least. That and isn’t FL very rare in young people.
Avatar universal
https://www.celgene.com/many-faces-lymphoma/

Regarding low grade lymphomas as well, I was told by hematology that Follicular is considered the slowest of indolent lymphoma and according to this (and the hematologist) there would have been a doubling in nodal size over the course of a year (approximately I’m sure) is that info true?
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
Then again, since the double has always been there, maybe you should want a recent one.
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1081992 tn?1389903637
COMMUNITY LEADER
"She also said the one radiology said was 2.9 cm actually looks a lot like two nodes stuck together making it look longer"
Was that previous and probably erroneous one from Mayo?
Helpful - 0
1 Comments
Yes actually from Mayo and another radiology department considered that one node. I should mention those two nodes together I feel certainly don’t feel two centimeters in total with my hands but I suppose depending on their location etc they could be longer in a direction that is not palpable? I guess it’s technically possible it’s another set of attached nodes I don’t feel but that seems too coincidental. When you say fibrosis you mean scarring similar to what is most likely happening with the ‘new’ nodes? Do they just get stuck when in close proximity? That doesn’t hint at something more sinister though?

Also from what you’ve mentioned before it sounds as though the fatty hilum is almost never present is a lymphoma lymph node if I understand correctly?

Having said all this, do you think I should even push for biopsy? Honestly this visit really put me at ease with learning the large one is most likely just two and another very large one reduced in size (quite a fair amount too) combined with everything else even my overly anxious mind has to admit the chances of anything bad are almost nil after a year and three months. She is going to do a follow up ultrasound and again I really believe I could get a biopsy from her but I get what she’s saying, I have a number of lymph nodes over a cm but unchanging and completely normal looking, besides the palpable ones (of which are 1mm, 3mm, 6mm and 8mm) are for sure different from the original state but also the smallest ironically. For all I know the others deeper in could have always been that size and I never knew. So I get what she is saying.
1081992 tn?1389903637
COMMUNITY LEADER
Congratulations, that sounds like a great visit.

"did say if she did it she wouldn’t really know which one to go for as my nodes are all so normal."
Well then, that's an opening for you to lobby for which one you'd like. I'd suggest the double - and if that's also the most visible then you get a cosmetic benefit, too.

"two nodes stuck together"
That makes a lot more sense to me than the idea that there was a single node which was naturally that long, without being reactive or anything.

"from what I understand shrinking certainly isn’t a trait of any cancer no matter how slow growing"
Yep, and that's a whole 0.8cm to boot.

"what causes nodes to be stuck together?"
Normally, I'd say fibrosis, being from fibroblast cells that get summoned and activated by inflammatory immune cells. From what you say, they move together, so must be attached. But still, in this case I don't know. The biopsy would tell.

Good news, very nice to see it. She sounds terrific. You got lucky this time that it's her.
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