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.
"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?
Then again, since the double has always been there, maybe you should want a recent one.
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?
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?
"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).
"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.
"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?
"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?
"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"
"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.