Aa
Aa
A
A
A
Close
Avatar universal

Lymph nodes slowly grew to 3.1x1.1x1.4cm over 2 years..still no biopsy

25 male,

Used to post here a lot, 2 years ago I had 12 lymph nodes along the left side of my neck and jaw pop up after a bad infection and never go down. Painless, rubbery, mobile etc. doc ruled out HIV, EBV family and several others. Well I was told on my 6month ultrasounds they were stable. Reviewing the images of the sonography they were growing. In 2019 the largest was a right side submandibular lymph node measuring 2.1x0.7x1.2cm in 2020 it had grown to 2.4x0.8x1.4 now in February it was 3.1x1.1x1.4cm. Normal architecture sure but WHY ARE THEY GETTING BIGGER AND NO ENT SAYING THEY ARE ‘STABLE’

I am livid. That is not stable, it has seen a big jump in size. Others gave seen small increases. I have 5 lymph nodes over 2cm long but short axis is under 1cm. Also have a 5mm thyroid cyst that grew to 6mm over 2 years.

Anyway I’m just at a loss, can someone explain to me how this is stable? How a doctor could in good conscious read that report and not do more tests? Regardless of the slow grow that size (over 3cm long and over 1 short axis) is way beyond normal isn’t it??

Please I just need advice, do I force a biopsy? What should I do. I gave 9 lymph nodes longer than 1cm, 3 longer than 2 and q over 3 with a short axis of over 1cm that have gotten steadily bigger over two years and none of my doctors test further.

An uncle died of lymphoma at 28 (low grade) when no one believed him about a lump in his groin region. I can’t let this go
17 Responses
Sort by: Helpful Oldest Newest
1081992 tn?1389903637
COMMUNITY LEADER
Hi, Spartan. I'm sorry to hear that this is continuing. I'll start by agreeing with you on very rightly being more than concerned. But I'll also end with the reasons for it still being likely not-cancer.

"do I force a biopsy?...
Yes!

"An uncle died of lymphoma at 28 (low grade) when no one believed him"
That's additional reason for a 'yes'.

"That is not stable"
I agree, since there are 3 done (which supports there being a trend) and not just 2 (which can almost be dismissed as fluctuation - though a 50% increase in length is a lot of increase).

"...can someone explain to me how this is stable?"
Most docs proceed by the book, and quickly so; they don't spend the time and effort in reasoning things out.

"Regardless of the slow grow that size (over 3cm long and over 1 short axis) is way beyond normal isn’t it??"
Yes, it's beyond normal and there's something extraordinary going on.

But the size alone is not a strong argument toward it being a cancer, because the oval shape is still maintained. Cancer tends to get more spherical.

"ENT"
You should have an oncologist to oversee this.

"Normal architecture"
Hilum still there? No suspicious dark or bright spots? No alarming blood flow on Doppler? Borders are sharp?

"sure but WHY ARE THEY GETTING BIGGER"
Probably from the same process(es) that started them getting bigger in the first place. It could still be accumulating fibrosis. However, it could conceivably be something else and so a biopsy is warranted to find out what *exactly* is going on. Or more precisely, it's foremost important to fully rule out a cancer, even though a cancer is not likely. But please be ultra sure to not let the pathology be limited only to that - you also want them to go further on examining the biopsy samples so you can know what is causing the growth.

One top guess is that the thyroid is currently driving inflammation in the nodes. 3cm can still be from inflammation, while 5-6 cm cannot.

"I am livid."
None can blame you for that.

"I can’t let this go"
Yep. Docs will vary, so pick the one you think will most agree with what you want. Or get a new one. Even a primary.

Here's my take, Spartan: the evidence pretty much still points to not-cancer. **BUT** no one IMO should take that for granted at this point because of the unrelenting size increases. Cancer can do surprising things, but so can the benign inflammatory chemicals.

Helpful - 0
4 Comments
My thyroid levels are all normal, negative for antibodies to thyroid as well.

An ENT did refer me to hematology a year ago and they even said how one was 2.9x0.8 at the time and the hematologist said they weren’t worried and put in the notes ‘past infection or natural variant of size’ and that was hardly any smaller than now. Reports all say normal appearance and I have some of the images (info cropped) if you’d like.

And I have heard that over 2cm long can be considered normal for submandibular nodes.
https://imgur.com/a/p3Zdfrb

There’s the images, same node 6 months apart.  The 2.6 is what it hung at for a long time. Then obviously the 3.1. First image was in June second in February.
https://imgur.com/a/p3Zdfrb Let me know if you need me to send these another way
1081992 tn?1389903637
COMMUNITY LEADER
I couldn't profess to be able to read sonograms. But still, yours sure do look like they're absent of anything malignant. Also the long length stands out so much, much more than in just reading the figures. I mean the lack of suspicious roundness.

One thing, though: I remember the "doubled" nodes we'd talked about some time ago. Doesn't it look like that just might be true there? With one behind the closer one, and a little to the left so that the combined length is longer than either alone. Was that the area on the neck of the possible double nodes?

Also, it's easy to see how ultrasound is less precise in measuring, as the marker on the right can easily have been placed a little this way or that. So generally, small variations in size are not significant in US, and can vary between operators.

Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
>> the hematologist said they weren’t worried and put in the notes ‘past infection or natural variant of size’

Past infection? Yep, the fibrosis; and also something current because they are getting bigger.

Variant of size? I think if that one were always big, you would have spotted it long ago. Still, there certainly is variance; I even remember a study which said that Brazilians tend to having longer nodes.

Not all people have the same number of minor muscles or minor nerves.
Helpful - 0
1 Comments
The ‘double node’ actually wasn’t a node, it was a small calcification in my neck. They don’t know what from but said likely some past resume. That was there since I was a child so I’m not too worried about that.

These nodes aren’t the palpable ones i first mentioned, they are tucked away in by the jaw and jugular where to feel them I need to extend my neck a particular way. They just seen them when doing an all around neck ultrasound at the start of this thing. For over 2 years the left one stuck around 2.4cm by 0.6 cm and right one 2.6cm by 0.8cm. So honestly these could have always been relatively larger I can’t say for sure.

Given their relative size being the same and in the same position on each side is it actually possible these are just my regular jugular/submandibular region nodes?

(My doc agreed the 3.1 warrants taking a peek at. He’s doing about her ultrasound in a couple weeks to see if it’s returned to previous size, if not he said they’ll start with a needle biopsy, which I’ve already had on another node, still it’s progress)
1081992 tn?1389903637
COMMUNITY LEADER
"My thyroid levels are all normal, negative for antibodies to thyroid as well."

Enlarged though, right? So there's some process going on, even though it doesn't have to be typical Hashimoto's or similar.

Unless you eat tons of broccoli and other goitrogenic foods.
Helpful - 0
1 Comments
Actually no my thyroid wasn’t enlarged. I had a small complex cyst on one gland but that was it. One gland was 5cm the other was 4.6cm long which they said was normal for men RHR ither dimensions were normal as well
1081992 tn?1389903637
COMMUNITY LEADER
"Given their relative size being the same and in the same position on each side is it actually possible these are just my regular jugular/submandibular region nodes?"

Yes, it's possible.  But not likely, IMO - though you might be 1/10000 or so, somebody has to be. Your thinking is correct, though: if it was from the tooth, then wouldn't the downstream inflammation effects be only on that same side? However, I'll remind you of Cat Scratch Fever. A bite on the hand often ends up with swollen neck nodes bilaterally. That's even though the lymphatic drainage goes up the arm, over to the heart and into the venous blood stream then to the whole body. So that doesn't quite make sense as far as pathogenesis, yet it's true.



"(My doc agreed the 3.1 warrants taking a peek at. He’s doing about her ultrasound in a couple weeks to see if it’s returned to previous size, if not he said they’ll start with a needle biopsy, which I’ve already had on another node, still it’s progress)"

Good doc :) At this point, though, I'd be more interested in the Doppler US looking for abnormal blood flow. Cancer makes biochemicals that induce growth of new, out of place, blood vessels (angiogenesis). In the periphery. Whereas benign inflammation makes stronger blood flow in the central cortex.

Btw, submandibulars are known for being more rounded naturally, yet yours are not.
Helpful - 0
1 Comments
The tech did Doppler, I can verify that with certainty as she showed me it. The report says normal structure and no abnormal blood flow.

You saying submandibulars are more rounded but mine aren’t.. is that a good thing or bad thing?

I did hear from one ultrasound tech who said submandibular nodes are often 1.5-2cm long on ultrasounds even non reactive. He also explained the long to short axis and that when something says ‘up to a cm’ they mean short axis. He even shared a video they showed him during his sonography classes where the instructor can be heard saying ‘do NOT report this as a 2cm lymph node, it may be 2cm long but is only 0.5cm wide, that’s the dimension to report to physicians as the elongated measurements vary significantly between people’ (Node was like 2.4) so it does seem that some nodes can be that long.
1081992 tn?1389903637
COMMUNITY LEADER
"it was a small calcification in my neck"
That's odd, because I think it was a sono tech that had suggested the hypothesis, right? Calcium reflects a lot, and so shows up very bright on a sonogram, there would have been no initial doubt.

Oh, but that's just a side issue and a distraction at this point.
Helpful - 0
1 Comments
Yeah whatever it was the radiologist didn’t even report it, just feels like a bit of hard tissue in my neck
1081992 tn?1389903637
COMMUNITY LEADER
Take a look here, at the sonogram which says, "Despite a maximum dimension of 3 cm, it is clearly benign with long-/short-axis ratio >>2 and a clear central hilum"

https://radiologykey.com/ultrasound-and-mapping-of-neck-lymph-nodes/

There are also some Dopplers after that.


Long long ago, (~10 years), max size in a dimension was considered very important, but no more. So be aware of the date of any source you are reading... as far as accuracy goes, older = less accurate.
Helpful - 0
1 Comments
Hmm so nodes can just be long guys from the start without any concern? I have a lot of nodes over a cm long but the big boy is the only one over a cm wide.

In your opinion if the node has returned to 2.6cm by 0.8cm on the next ultrasound should I let it go? Can we be confident in that scenario it was reactive etc?
1081992 tn?1389903637
COMMUNITY LEADER
Right, they normally do the Doppler but I'm saying that is more indicative than the dimensions.

"You saying submandibulars are more rounded but mine aren’t.. is that a good thing or bad thing? "
good

"wide, that’s the dimension to report to physicians "
I've never seen an ultrasound report that only states one dimension. Have you?

Otherwise yes, there is natural variability. You can likely websearch and find studies, but unfortunately study authors are obsessed with averages. So surely there are people with benign 3cm long nodes, but you can't know how often that occurs, except if the authors follow the more recent practice of including a graph called a scatter plot.

If a node was 'naturally' 2.5cm, it wouldn't  be growing - and we have discussed the growth as the big factor.

Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"In your opinion if the node has returned to 2.6cm by 0.8cm on the next ultrasound should I let it go? Can we be confident in that scenario it was reactive etc?"

I've always thought that and still do. A minor change either way doesn't sway that.

But I think you should have the biopsy if you can, to set your mind at ease. The growing nature might convince a doc to order the biopsy - but I personally don't think it is alarming.
Helpful - 0
1 Comments
I appreciate you opinions as always. In this case if it had returned to its prior state (2.6/0.8) wouldn’t that be chalked up to being reactionary at the time? The one on the left was slightly larger as well so I suppose it’s possible some minor immune upset was occurring from the mouth or sinuses etc. or are there lymphomas/leukemia’s that can also make them go up and then down again? Because couldn’t it going up half a cm just be reactionary if it’s short term even if I didn’t feel ill?
1081992 tn?1389903637
COMMUNITY LEADER
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5073388/

"The smallest lymph node diameter observed was 0.4 cm, and the largest was 2.7 cm.'

That gives the maximum, in a study group of only 20 supposedly healthy people. But it still doesn't give a clinician or a patient an idea of how prevalent long neck nodes are. Other studies you can websearch might be more revealing. There also is a Table with some figures.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"In this case if it had returned to its prior state (2.6/0.8) wouldn’t that be chalked up to being reactionary at the time?"
Yes. Or even if it got a little bigger, that could be chalked up to being reactive. That's why I say it doesn't matter either way in the large scheme of things - though admittedly it would be very reassuring in the short term if it goes down.

"it’s possible some minor immune upset was occurring from the mouth or sinuses etc."
Yes, that's likely.

"or are there lymphomas/leukemia’s that can also make them go up and then down again"
Yes, its called waxing and waning --- though that's from cancer-associated inflammation and not from the number of cancer cells going up and down.

"Because couldn’t it going up half a cm just be reactionary if it’s short term even if I didn’t feel ill? "
Absolutely. It could even be a local immune system flare up, without any actual infection to fight. It just goes amok for no known reason.


In summary, you do want to see it go down in size, but it's not so bad if it doesn't.

Helpful - 0
2 Comments
But what if it goes down and the docs go back to ‘well now you don’t need biopsy’ mode. I had the FNA on a different node over a year ago now and started to let it rest but I’m just worried if this one is concerning at its 2.6x0.8 size? I know that’s technically not enlarged but still, isn’t that fairly big? Or what if they needle biopsy again, it comes back clear and then they refuse excision, I know FNA can detect abnormalities with lymphoma but isn’t it only like 60% effective at that?
Also with the waxing and waning-even a low grade blood cancer would cause progressive overall growth though wouldn’t it? It’s been 2.5 years now with no change until that report, isn’t that long enough to even make indolent cancers unlikely? I’ve never heard of what that stops and starts (without treatment that is)
1081992 tn?1389903637
COMMUNITY LEADER
"But what if it goes down and the docs go back to ‘well now you don’t need biopsy’ mode."

Yes, they would do that.

"I had the FNA on a different node over a year ago now and started to let it rest but I’m just worried if this one is concerning at its 2.6x0.8 size?"

Nope, size is almost irrelevant here. Relevant/bad would be: roundness, loss of hilum, new blood flood at periphery, irregular borders. Then these are mainly in metastasic nodes (not lymphoma): calcification flecks, and cystic (fluid filled) areas.

"I know that’s technically not enlarged but still, isn’t that fairly big?"

Yep, but size is almost irrelevant here.

"Or what if they needle biopsy again, it comes back clear and then they refuse excision"

It will, and they would.


"I know FNA can detect abnormalities with lymphoma but isn’t it only like 60% effective at that?"

Those numbers can vary.But mainly there is no suspicious spot to put the needle into, aka a guided needle biopsy. So in this case, it's mostly a shot in the dark at something that isn't there.   :)   <1% chance of finding cancer.

The doc might be merely assuaging you with the needle biopsy. I wouldn't order an excision regardless, except that it would make you feel better. So ironically, you would want the node to get even bigger so that you warrant an excisional biopsy to prove it is not cancer.

PLUS, as I've always said to you, the biopsy is a chance to uncover the real non-cancer cause.
Helpful - 0
1 Comments
But how do I be sure they even test that? I’ve joined several groups taking about lymph nodes like mine online and it’s been reassuring, it seems that these mystery shorty nodes are actually very common in fact one ENT even had me feel her’s too. Yet the few who do get a excision often just say it is reported benign and that’s the end of it. Occasionally one would comment ‘they said certain cells implied a mouth issue or scalp issue was causing it’ but nothing about fibrosis etc.

Also maybe this is totally unrelated but I do technically qualify for macrocephaly, my head is just over the top 2% in size mark, does that mean other structures in the head could be as well like the nodes?

I guess I’m just confused, you really don’t seem concerned about malignancy which is reassuring but is that based more on the fact the sonography is so clean? Is ultrasound really specific enough to see signs even of slower growing stuff?
1081992 tn?1389903637
COMMUNITY LEADER
"Also with the waxing and waning-even a low grade blood cancer would cause progressive overall growth though wouldn’t it? It’s been 2.5 years now with no change until that report, isn’t that long enough to even make indolent cancers unlikely? I’ve never heard of what that stops and starts (without treatment that is) "

Yes,  it would be like an undulating upward trend.

Yes, 2.5 yrs without growth is a long time. If you want, I  can tell you why a cancer can switch into growth mode.

For the opposite, as when a cancer gets smaller without any treatment? As far as I know, that's when the immune system's killer cells get revved up: as when the person gets certain viral or bacteria infections -  especially if just by chance the covering of the virus or bacteria somewhat 'looks' like the covering of cancer cells.

Helpful - 0
1 Comments
So I’m a bit confused, in my case is the time likely enough to rule out even low grade cancers after so long (or at least make them very unlikely) or do some really spend this long before growing?
1081992 tn?1389903637
COMMUNITY LEADER
"But how do I be sure they even test that?"
You have to insist beforehand that it's in the order to the pathologist. Written precisely so. Otherwise, as you describe with the other people, it's only about "not-cancer", then let's forget it. What a wasted opportunity. Similarly, a few docs still order a scan on a suspicious node to be merely a CT without contrast, so nothing is learned about the inside of the node -- as opposed to all that a sono tell you.

"macrocephaly"
If no excess Growth Hormone? Then no problem that I see.

"you really don’t seem concerned about malignancy ...is that based more on the fact the sonography is so clean?"
Exactly.

"Is ultrasound really specific enough to see signs even of slower growing stuff?"
It sees the effects, whether they accumulated slowly or quickly.



Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"in my case is the time likely enough to rule out even low grade cancers after so long"
no

" (or at least make them very unlikely)"
yes

"or do some really spend this long before growing?"
I don't think that could be known with any certainty, since as a practicality who would be studied and how? Anything is possible, even it the odds are 0.0015%. But if it is that super slow, then the only thing for docs to do is have periodic scans. They are doing the right thing.


Btw, many people diagnosed with very slow growing lymphoma get put on watch-and-wait anyway, since the bad effects of treatment are not called for until years later when the cancer gets worse. The whole "early detection is crucial" is not always true.

Helpful - 0
1 Comments
I see, still from what I understand low grade lymphomas are pretty uncommon in young people right?

Plus would low grade lymphomas show signs of suspicion on ultrasound? Especially given the time passed and the size at this point?
1081992 tn?1389903637
COMMUNITY LEADER
Let me summarize that point: it has been years without any node showing actual signs of cancer. That is very strong evidence that there is no cancer.

The same is true for the very good scans.
Helpful - 0
1 Comments
Yeah, I will let you know what the next sonogram tells me. Like I said I actually stumbled upon a group of thousands online with these mysterious nodes and they all had similar stories. That really calmed me down, there’s no way we all have some indolent lymphoma etc and with others I’ve met in real life pointing out a node here or there it actually seems fairly common to have these. One ENT suggested the big boys have been that way awhile and I just didn’t notice (given the location it’s possible) as they are first defense to mouth and nose issues etc and see a lot of action.

However the only other thing I think is worth mentioning is when the chest CT was clear but showed a ‘tiny calcified granuloma’ in my central lungs. An X-ray as a child showed central calcifications and mildly prominent interstitial markings as well in what they thought was asthma now docs say that was very likely an incorrect diagnosis. My personal doc wonders about histoplasmosis or something else like that (we live near the Mississippi and it’s very common in our soil and I played in the garden all the time as a kid) could that play into the nodes at all years later? They did a TB test which was negative so no concerns there. You always hear about certain illnesses known to scar nodes (I’m assuming other random viruses can be prone to as well) and I just don’t know if there’s a correlation. If you recall this all began after a very bad chest cold that took 2 weeks if antibiotics to kick and then AFTER the antibiotics the nodes popped up, my cough lingered 6 months and it was tough. My doc now wonders if the antibiotics weren’t around long enough to fully kick it and that’s why it lingered.

1081992 tn?1389903637
COMMUNITY LEADER
"Plus would low grade lymphomas show signs of suspicion on ultrasound? Especially given the time passed and the size at this point? "

Yes, most probably. On both counts.
Helpful - 0
Have an Answer?

You are reading content posted in the Leukemia and Lymphoma Community

Top Leukemia & Lymphoma Answerers
1081992 tn?1389903637
PA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
An interview with the co-discoverer of one of the biggest breakthroughs in cancer research
From causes to treatment options, get answers to your questions about CML, a type of blood cancer
New drug options on the horizon may make CML, a type of blood cancer, one of the few success stories in cancer treatment
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.