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Finally getting lymph node excision, but they aren’t removing the suspicious nodes?

You’ve seen me here plenty of times and my new ENT is thinking it’s time to remove one since I’m so concerned about it. However he says he will not be touching the big boys due to their location near arteries and facial nerves. He is doing an ultrasound to look for a node in a better place among the side of the neck that he can just use local anesthetic for. While I’m totally onboard with this I’m concerned removing a node so far from the big guys will potentially miss something…is this likely? The biggest one is 3.1cm by 1.1cm and it’s the right jugkiodiastic node behind my jaw. The left node symmetrical to it is 2.7 by 0.8cm and he won’t touch that one either, he’s looking at the nodes on the posterior part of my neck and while they did become palpable assumedly the same time as the others (they were the ones I initially noticed 3 years ago) they are all bean sized, measuring barely over 1cm. However the did become palpable suddenly and just on that side so whatever would be causing them all to change should be present there shouldn’t they? I just don’t want to go through all this and potentially miss the actual culprit. What’s your opinion here?
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1081992 tn?1389903637
COMMUNITY LEADER
"While I’m totally onboard with this I’m concerned removing a node so far from the big guys will potentially miss something…is this likely?"
It's certainly possible. Both in theory and also in an actual case I've seen here. But it would be rare.

"However the did become palpable suddenly and just on that side so whatever would be causing them all to change should be present there shouldn’t they?"
Probably. Very probably.

Here's what will almost certainly happen: the biopsy will show not-cancer. But that doesn't prove beyond a doubt that the big nodes are not-cancer. So after a few weeks or months, you'll still be back to where you've always been.

Except for the following: the pathologist will have a whole node to examine. So there is more of an opportunity, as compared to a needle biopsy, for the pathologist to discover the real cause of the nodes enlarging. But if the order to the pathologist doesn't say to explore every avenue (fibrosis, any pathogens, active inflammation, etc.), then I'd say the biopsy is wasted - since you can always reason that the other nodes are possibly different than the biopsied node. Or let's say that they did take out one of the big ones, then you can still think that the *other* big one was the bad one all along.

Btw, I'd guess that the ENT is doing this to more or less placate you. If any doc thought there was actual cancer then they wouldn't be deterred from biopsying the big node(s) because then the risk is outweighed by the assumed benefit. But with you it is not seen to be much benefit, because there is no sign of cancer except for absolute size -- and size alone is not very much convincing.
Helpful - 1
1 Comments
So just to be clear; you do however think it’s very likely that a lymph node at least in the same area would reveal cancer if it’s present? You’re saying it’s rare that it wouldn’t be present in those nodes too?

I get your point about looking further into things and he had they look for granulomas on the needle biopsy so I will ask what all we can do here.

A couple questions, one lymph node being removed isn’t the same thing is full on neck dissection is it? Also is potentially taking out one node going to potentially cause lymphedema or is that more when several are removed?
1081992 tn?1389903637
COMMUNITY LEADER
As far as your surgical risk, I would want to speak to the surgeon.

I think that if a nerve has to be physically pushed aside, that is a big factor to consider. I don't want to increase your stress, but I've always been honest with you over these years - and that difference in risk is not a small thing, IMO.

The worst risk is paralysis, then maybe loss of sensation or else getting constant neuropathic pain. Then constant tingling or weakness.

I looked but haven't been able to find any authoritative statistics on this, sorry.
Helpful - 0
1 Comments
He made it clear that he brought it up only because it’s part of his obligation to make sure I know every risk. He also said he thinks it’s less than half a percent nerve damage occurs. He said the most likely (but still unlikely) is some weakness for a day or two from having to move the nerve. So he seems confident it’s not a big issue, I guess I just don’t know another option. With them getting bigger we can’t really put it off.
1081992 tn?1389903637
COMMUNITY LEADER
"...one lymph node being removed isn’t the same thing is full on neck dissection is it?"
Oh, I think you're talking about something different: when it's known that a cancer is present for sure, they might take out downstream nodes aka sentinel nodes - just in case those nodes might have already collected a few undetectable cancer cells in them.
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"Say they do only get half of it, if that’s benign does that still speak for the rest of the node?"

Let's imagine that the node is clear, except for one spot of cancer in that other side that does not get excised. If there were such a spot of cancer over there, it would have shown on an ultrasound.

If the suddenly growing node contained any spot of cancer that was growing fast, then *that* fast growing spot would have shown on any ultrasound. The node would also be misshaped, which would have shown on a US.

Note that there are such things as benign lymphoid hyperplasias, maybe that's what is going on. They are not-cancer. But they probably would have shown on an ultrasound. So it's a mystery.

Have you had a vaccine lately???


As for surgical risk: That's not my field, but actually having to touch and maybe push a nerve out of the way would seem to have extra risk, than if not touched.
Helpful - 0
1 Comments
Nope no vaccine. So in this case IF a node were to have indolent lymphoma etc or blood cancer, wouldn’t any part of the node of sufficient size show that? Keep in mind this node is still technically a bit smaller than the right side one but he wants to do this one since it still went from 2.2cm to 3.0cm. I assume it would speak for its brother too on the other side of the jaw?
1081992 tn?1389903637
COMMUNITY LEADER
You alternatively can think: "What caused this oddity? Doc, can we try a short-term powerful anti-inflammatory steroid to see if the node reduces?"

And thereby you might avoid the surgery.  
Helpful - 0
1081992 tn?1389903637
COMMUNITY LEADER
"got a cm bigger"
That's a lot, out of the blue. Completely unexpected and very odd. There was an ultrasound recently, right? Because the doc said the architecture is still normal. So that rules out a sudden cystic (fluid) formation, or a bleed - they would have shown as such.

So odd to have a rapid jump in size after all this time. It still doesn't seem like cancer, though; but the doc can't just wait and see, after this odd development. He has to be sure.

I wouldn't turn down the excision. Yes, I know: that's easy for me to say.

There are two time periods, to reckon with the fear: the day of the surgery is one, that they can readily deal with using a pre-operative tranquilizer. The other ultra stressful period is during the weeks until surgery day. I'm not sure what to say about that. You can ask for a med, and/or fling yourself into trying various anti-anxiety mental strategies.

I don't think that discussing how low the risk is will be much help.

But btw, I'd definitely make sure to discuss this with the anesthesiologist right before the operation. Just so they are aware. E.g., if they'll be using "twilight" anesthesia, then they might need more than usual because you have a very powerful adrenal response.

Let me know if I can be of some help somehow, my friend.
Helpful - 0
1 Comments
Yeah the size increase was enough for me to commit to it as well, the doc isn’t very worried about cancer or anything still, he even said IF I wanted we could recheck in a few weeks to see if it wasn’t just reactive to something and went down a bit but ultimately at this point said it was just enough to push him to the removing it part. It’s in a region near two arteries and a facial nerve and he wanted to make it clear he’d have to probably move the nerve to get what he needs, he said there is a small chance of permanent damage but I assume this would be pretty slim right? Docs have to warn of every potential I assume? He also said depending on the position he may not get everything but is sure he can get enough for what they need. Say they do only get half of it, if that’s benign does that still speak for the rest of the node?
1081992 tn?1389903637
COMMUNITY LEADER
"you do however think it’s very likely that a lymph node at least in the same area would reveal cancer if it’s present? "
Yes.

"You’re saying it’s rare that it wouldn’t be present in those nodes too?"
Correct. But it's not simple. The node to be excised is not downstream of the front, large nodes. So cells wouldn't spread in a direct path. The lymphatic fluid path goes down to the venous circulation, into the heart, then out to the whole body via blood circulation.

"I get your point about looking further into things and he had they look for granulomas on the needle biopsy so I will ask what all we can do here."
Very good.

"...one lymph node being removed isn’t the same thing is full on neck dissection is it?"
I'm not sure what you mean there. But normally in a cancer patient, many nodes are removed in 'debulking' surgery only for specific reasons.

"... is potentially taking out one node going to potentially cause lymphedema or is that more when several are removed?"
Each one would have it's own individual risk. Same for lymphocele. But in the neck, the risk is probably very small.

Happy Easter, Spartan.
Helpful - 0
2 Comments
Thanks Ken I appreciate your insight as always, my follow up is coming soon where we will discuss which he wants to take and I will fill you in on anything new we find.
Well on my follow up the ENT said one of the big boys changed and got a cm bigger. He said that architecture is still normal but at this point the change is just enough for him to want to go in. So he wants to take the node (jugliodiastic I believe, up behind jaw/top of neck) he said for this there’s a small risk of damage to the facial nerve and that I would have to be put under for….I’m terrified. Genuinely I get everyone is nervous about anesthesia but please understand I am that 1% with a true phobia. I don’t know how I’m going to do it. I’m happy this will put it to rest but just so terrified of surgery.

Any thoughts here?
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