-Shape is more important than length. Oval/elongated is good, rounded tends toward bad.
- tender and movable and those are good signs.
tender *tends* toward not-cancer, since cancer grows right through the enclosing capsule, while reactive nodes press outward against it.
- non-moveable nodes can be non-moveable/attached because the cancer is invading adjacent tissue. But then again, a fiercely reactive node can generate fibrosis and sometimes become attached.
"fatty hilum"
Good, you've been studying. CT with contrast should be able to see the fatty hilum. Sometimes the report is just too brief.
Ultrasound definitely sees the presence or absence of the hilum, plus many other things such as blood flow (via Doppler US).
"Sorry for the novel"
No no no no nooooo :) With all you wrote, you gave us the alternative diagnosis.
I have seen on this group that a tendency to heightened anxiety is associated with a hyperactive immune system. Guess what? A hyperactive immune system is quite able to enlarge lymph nodes for no ordinary reason, such as a readily detectable infection.
Would your docs agree? Only if they are used to it.
I'll post this quick before you go to bed, then I'll write more tonight or tomorrow.
"And I am a former smoker and vaper, ugh, I know."
Me, too. It's not like being a pariah.
"I read short axis should be measured!"
Yet how simple and easy to give W x L, which is much more valuable. There is even 3D US, W x L x H.
"I told the ENT that the CT was not done correctly but he said it looks like most CT reports he sees."
And we can then say that most are therefor inadequate. But I'll add that it is ultra common for w x l to be given in US reports.
Yes, the American College of Radiology says that CT should be done, not US. But by far the first line scan done on all the people who have come here is US. Why? Because the front line docs, the GPs, know it's better.
[Are you in the USA? You talk American. (But don't give too much oersonal detail.)]
"I could not eat for 2 days because all I could think of was leaving my 3 children. I was so stressed I almost was sick to my stomach."
I'm sorry that I didn't answer sooner. I'll try to make up for it by answering a lot now. :)
"I assumed it would be short axis measurement."
Yes. Old fashioned, in the bad way not the good way.
"When the PCP said to go for a CT I asked, shouldn't I do an ultrasound first?"
You're very sharp.
"But he said I was super anxious so a CT would be more definitive."
What do they mean, fidgeting?
"I know you said a biopsy isn't justified here but why not?"
Because it is expensive (insurance must agree to it), AND it has some surgical risk. Anesthesia, infection, slip of the knife (especially with nerve or artery nearby).
"So why not do the gold standard to be sure?"
Because there's not much that points to cancer in you.
'I don't want to be one of those patients who doesn't have something done and then 2 years from now is sick, and when this lymph is mentioned the treating doc will say "why was this not biopsied 2 yrs ago?, it could of made a difference here today". You know?'
Yes. But still, there's not much reason to think it is cancer. But maybe we can say there is just enough reason for a US, to RULE OUT cancer.
"...does that mean just one node in one region?"
Yes, but region is sort of a technical term so I'd say "area".
"My ENT also said it was a good sign that 2 were seen in one region and not just one even though he could only feel one."
I dunno, because two can be metastatic, besides being downstream of inflammation. Which yours are very likely not metastatic, but I did say I'd give both sides. I'm not just sugar coating things, that wouldn't be right.
"no vaccines, no cat fever, no TB, no scratches, etc...."
You're very sharp. Now use your ability, to delve into "auto inflammatory".
What about gut bacteria? Or anything like IBS? Severe allergies? Sensitivities to mold, dust, foods, bee stings? What Hx of any medical oddities? What Fx?
"3 doctors told her she was too young for a colonoscopy when she had blood in her stool!!"
Point taken, but you don't have the equivalent of such a strong sign.
Here's a statistic: out of every 100 people who have unexplained and long lasting node enlargement, only 4 get sent for a biopsy and only 2 have cancer. Yes, the counter can be: but that's not for supraclavicular specifically. But even so, that stat never made sense. Etiology-wise, that is.
Once upon a time, every one in medicine was saying that a human has 10 times more bacteria in their gut than they have of their own human cells. Everyone repeated it, but it was never true. It's now recognized by everyone that it's not true. That's sort of a parallel of the 90% thing. In a perfect world, there would be a study (maybe there is one) which says that of all supra lymphadenopathy that looks benign in scans, 90+ % are not-cancer.
Btw, metastatic nodes are somewhat different on scans than primary lymphoma. E.g., there's more calcification - which would light up like a banshee on CT. Primary supraclavicular lymphoma would be rare.
primary lymphoma = the first one
"That 90% stat is just messing with me so much..."
Let's address that then, I did some digging. You should like this a lot. I know you're probably kind of burned out. I hope you get through this.
https://www.medilib.ir/uptodate/show/8386#rid7
"Evaluation of peripheral lymphadenopathy in adults" 2022
Scroll down to 'Supraclavicular'.
"Supraclavicular lymphadenopathy (figure 1) is associated with a high risk of malignancy. In two studies, malignancy was found in 34 and 50 percent of patients with this presentation..."
Now, that's much less than 90%. Even so, let's look further. "Presentation" means when they first show up at the doc's office, right? 35% is still pretty ominous, then. Right? No, not if we track things down.
The two cites start with:
7 : Unexplained lymphadenopathy in family practice. An evaluation of the probability of malignant causes and the effectiveness of physicians' workup
"A retrospective analysis was performed of 82 patients who underwent biopsy for unexplained lymphadenopathy from 1982 to 1984..."
Ahaaaaa. So what was described as patients who were *presenting* with supraclavicular lymphadenopathy, was really only about those who were so concerning as to warrant a biopsy. You now know from personal experience that not everybody gets a biopsy, even if they want one. Only the cases that seem the worst, most likely from scans, get a biopsy.
So let's rephrase things: of the cases that look bad on scans, only 35% turn out to actually have a cancer. That's 29 out of 82.
Also: "A total of 29 malignant lymphadenopathies were identified for a prior probability of 1.1 percent"
So that 29 includes mostly the ones who looked bad.
29/82 = 35%. But that 35% is not specifically for supraclavicular. Something is really off here. But I can't see the whole paper.
Finally: "A total of 29 malignant lymphadenopathies were identified for a prior probability of 1.1 percent"
So out of all with supra who went to a GP, only 1.1%v have cancer, and they would be those who most likely had bad scans.
"That 90% stat is just messing with me so much..."
Let's address that then, I did some digging. You should like this a lot. I know you're probably kind of burned out. I hope you get through this.
https://www.medilib.ir/uptodate/show/8386#rid7
"Evaluation of peripheral lymphadenopathy in adults" 2022
Scroll down to 'Supraclavicular'.
"Supraclavicular lymphadenopathy (figure 1) is associated with a high risk of malignancy. In two studies, malignancy was found in 34 and 50 percent of patients with this presentation..."
Now, that's much less than 90%. Even so, let's look further. "Presentation" means when they first show up at the doc's office, right? 35% is still pretty ominous, then. Right? No, not if we track things down.
The two cites start with:
7 : Unexplained lymphadenopathy in family practice. An evaluation of the probability of malignant causes and the effectiveness of physicians' workup
"A retrospective analysis was performed of 82 patients who underwent biopsy for unexplained lymphadenopathy from 1982 to 1984..."
Ahaaaaa. So what was described as patients who were *presenting* with supraclavicular lymphadenopathy, was really only about those who were so concerning as to warrant a biopsy. You now know from personal experience that not everybody gets a biopsy, even if they want one. Only the cases that seem the worst, most likely from scans, get a biopsy.
So let's rephrase things: of the cases that look bad on scans, only 35% turn out to actually have a cancer. That's 29 out of 82.
Also: "A total of 29 malignant lymphadenopathies were identified for a prior probability of 1.1 percent"
So that 29 includes mostly the ones who looked bad.
29/82 = 35%. But that 35% is not specifically for supraclavicular. Something is really off here. But I can't see the whole paper.
Finally: "A total of 29 malignant lymphadenopathies were identified for a prior probability of 1.1 percent"
So out of all with supra who went to a GP, only 1.1%v have cancer, and they would be those who most likely had bad scans.
Take the week off from worrying about this. On the weekend please post what the ENT says.
Well, listen... you'll probably return to the worry eventually, so I suggest you push for the US anyway on Thursday. Tell the new ENT that the worry is giving you severe symptoms. Don't be stoic there, while nevertheless always being rational.
I have to laugh because when I looked for any supporting cite for the "90%", the first one I encountered refers to the study I analyzed. LOL
Seems like a massive foulup, yes. That study's abstract does not even contain the figure of 90 in any shape or form.
Enjoy your respite.
Good work in finding that full text. That helps a lot. Bravo.
I'll be brief. I was going to hold off on replying, but you'll probably be worrying again in the morning about the 90%. So here goes, in two parts. Feel free to not read until the weekend.
The authors themselves say what I'd been saying: that the results from studying their subpopulation (those referred for surgical biopsy) shouldn't be applied to the more general population of people with unexplained lymphadenopathy at the GP. But, since those were early days, it's fair that they can go on to take the liberty of speculating.
"Variables and models discriminating among causes of peripheral lymphadenopathy have almost exclusively been studied in referred or selected populations similar to the population studied here... In selected populations these variables could be useful, but they cannot be applied in primary care without caution. Patient characteristics with high specificity in selected populations may have a
much lower specificity in unselected populations presenting to the family physicians; indiscriminately applying these characteristics may therefore lead to a tremendous increase in unnecessary referrals."
Focus on these statements in there:
CANNOT BE APPLIED IN PRIMARY CARE WITHOUT CAUTION
and that doing so
MAY THEREFORE LEAD TO A TREMENDOUS INCREASE IN UNNECESSARY REFERRALS [to surgical biopsy -- in other words, benign cases like yours shouldn't get a biopsy, only bad-looking cases. In reverse that means that only 'bad' cases were included in their data.]
==============part two=============
"Because of the relatively low number of cases, a multi variate analysis was not deemed appropriate." (That's a math/statistics thing.)
But then, the part about 90% is doing just that, sort of, by speculating on how supraclavicular PLUS age over 40 jumps way high to 90%. That's **Mulivariate** ! But again, it's fair in beginning research. What is NOT fair is for endless docs in our time to be talking about the 90% figure as if it is factual.
==================================
Well, that wasn't very brief after all.
But here's a btw: surgical resection of supraclavicular nodes is known to have much more risk of trauma harm than most biopsies in the actual neck; so that's another reason they don't want to do that.
This is not a bother at all, Chloe. When I sink my teeth into something, I want to keep at it until it's solved.
Here's a tip: if the ENT won't order a US, you can ask for the existing CT images to get a "review" by another radiologist. It's so odd to me, to report only the diameter, so old fashioned. (I'd asked where you are in case you live in Bermuda or something, where they might do things old fashioned. I dunno.)
You want to know W x L, and yes also about the fatty hilum being present or not. (The reason: the hilum gets "effaced" aka replaced by cancer cells, but not so in a reactive node.) Why is shape important? Because cancer typically grows out in all directions, while a reactive node gets bigger in an orderly fashion and keeps its oval-ish shape. [It's easier to remember things if you know the why of it.]
But a US can also see blood flow, when using color Doppler, as they always use. Cancerous nodes release chemicals which stimulate growth of new blood vessels, so they can grow and grow, bigger and bigger. (Angiogenesis--> angio = blood vessel, and genesis = create.)
Why might your nodes be still enlarged after a long time?
(1) The most frequent reason is prolly that they have formed fibrosis (scar tissue) inside. That can happen when an infection gets inside the node, esp with an overactive immune system. Immune cells tell other cells to "grow collagen/fibrosis". Also to deposit calcium or not, which often happens in metastatic nodes.
(2) Or it has 'granulomas', which I doubt. (That's an immune system thing.)
(3) Or it is being chronically stimulated by downstream release of pro inflammatory chemicals like cytokines. From infection, or from an immune system gone amok. That's being chronically reactive.
So as you can see, there are genuine benign causes for a node not going down.
Oh well, I knew I should have said that a "review" almost certainly has to be ordered by a physician. But I thought I had bombarded you too much already. Lots of people shrink away if there's 'too much' discussion. I'm pretty sure that "review" is the correct term. (And I have to "stop" using the "quotes" too much.)
Btw #1: one of your docs might order another scan, 6 months is the usual period. Some docs readily order tests and scans, some don't. Yes, you should want the 6 month followup scan for peace of mind - preferably an US.
Btw #2: a doc might say that a US won't see deep enough to get a good look at the 2nd, deeper node. But I'd buy that ONLY if the inner one was MUCH bigger - which it's not, right? Otherwise I'd want the outer one for an US.
The approach should be to get at the most suspicious one, *if* it's sufficiently accessible.
----
I have seen the term diameter referring to the short axis probably more, but also sometimes the long axis.
----
Absence of hilum can rarely be caused by fierce inflammation. Not only by cancer.
Thanks for the update. I actually LOL'd through most of it, he sounds like a loon. But at least he says he doesn't believe in censorship.
I also agree with the conclusions about not-cancer, of course. As I have from the beginning.
I interpret his words like so: "your signs are so far removed from having cancer, that no further scans are warranted". That should be reassuring.
"Granted, I did talk over him quite a bit in the beginning because I was nervous."
That was an LOL spot, too. Though I suppose it's not the tactical thing to do :)
If you ever want to write a script for a sitcom, you have some material there. (I'm laughing at him, not a bit at you - of course.)
"(His medical assistant had said they have lots of patients with "reactive to the vaccine" nodes, especially women). "
Kudos to her for admitting that.
"Then he went off on a rant about how 98% of studies show the vaccine is safe..."
That's not quite scientific of him, is it? The central point should be that people with overactive immune systems would be at more risk than the average person.
"I feel better cause he also said there is nothing wrong with me"
good
"BUT then again with his attitude, can I trust anything he says??"
Well... the part about it being not-cancer, yeah. Because that is a valid clinical approach and conclusion. Except for saying the info in the CT report was enough. Though you never did post that, word for word.
"He was so condescending, rude, know it all, etc.... "
That's irrelevant to his conclusion though.
Now, let's jump ahead to tonight and tomorrow when your mind will be going over the what-ifs. As in "what if it really is cancer because..." Instead of that, try to steer your analytical thinking to the following: what sort of inflammation upstream from the node caused the node to enlarge?" In that way, you can keep your mind directed to something productive. Plus you'll be acquiring valuable knowledge which you'll use for the teast of your life. E.g., inflammation is a central factor in chronic conditions like heart disease, so by daily being anti inflammatory, you tend to be healthier in the following decades.
As always, I am glad to be of help.