Updated Node Scan: am I still in the right forum?

[sainttsp]

Hi,just to review: 3cm inguinal node, not reactive, loss of hilum, needle biopsy showed no metestatic cells, now waiting for consult with surgeon for full biopsy. I had another scan of the node last week and VERBALLY, it didn't sound so good. I asked her if it still looked suspicious? Yes. Did it still show same characteristics? Yes. The largest node has only grown a tiny bit, but it still concerned her. She was very surprised that this was not being done in a more timely matter. She said the node needs to be taken out and we really need to see what is in there.The report itself is very simple. It states that it is noted AGAIN that there are multiple enlarged nodes, and that several of these have lost the normal architecture detail. However there has been no DRAMATIC increase in numbers or size since the last study. So I ask again: am I in the right forum?

[Ken_PA]

Lymphoma is the most dangerous possibility, but with the plateauing in size it very well might not be the most likely. So you have reason to put it out of your mind until August.

Yes, I certainly want to know how it turns out!

Here is a lymphoma story with an unusual outcome and a good ending, worth the read: http://www.medhelp.org/posts/Leukemia--Lymphoma-/Any-other-possibilities-than-lymphoma/show/2218418

"in how many nodes removed does it go from being a biopsy to a dissection? "    a resection is the same as a surgical biopsy, the same as "excisional" ----  all as opposed to a needle biopsy --- though you could also say that a resection can be a treatment, as in when a node is removed because it is pressing on something

Have fun on your trip. It should be a good day when you post back in August.

[sainttsp]

I have a surgical biopsy scheduled. The surgeon is going to remove at least two nodes, possibly more, he said, depending on what they look like I guess. But for sure two nodes are coming out. He said that they will test for many, many things, but he said that obviously lymphoma is the biggest concern.
He wanted to do the biopsy ASAP, but I am travelling in a few weeks, by plane and by cruise ship, so he did not want me post-op in the Caribbean. I agreed. So the first available after that is August 11th. Not ideal; still waiting, but the trip is non-refundable.
I didn't think to ask him, at what point, as in how many nodes removed does it go from being a biopsy to a dissection? He didn't warn me that I might have a drain in, and he is very thorough, so I think he would have mentioned the possibility of it if there was one.
I am more than happy to come back here in August and let you know how things go. You have been a tremendous help to me and I think you might also appreciate knowing how this story ends.

[Ken_PA]

yes, more involved

but if very node plateaus at 3cm, than that tends to not cancer, I'd think

[sainttsp]

I was just wondering that very same thing. The other nodes seem to continue to swell and  one node feels almost as big as the 3cm node. It sits right next to the large node. Does that make it a more involved procedure, with even more downtime? I was hoping to only have to take a day or so off work.

[Ken_PA]

Don't forge that a surgeon might examine the first node right there in the O.R. and then want to take the others.

[sainttsp]

Thanks Ken. I have decided to just sit tight for the next three weeks until I see the surgeon. I agree that since the rate of growth was no minimal at last scan, that this doesn't need to be a critical rush anymore.
We did discuss inflammatory pseudotumor, but you (with just guesswork, I know), thought it didn't fit because of what cells were not found in the needle biopsy. So with fibrofatty cells, loss of hilum and loss of normal architecture in a few of the nodes, I still think there is something serious going on, but what is it? A full biopsy will hopefully show what cells are in there. If I didn't have chatty and informative radiologists, I wouldn't even know that this was an alarming situation. But they are alarmed by what they are seeing. But nothing is ever "usual" with me. I have a history of growing things: kidney stones, gallstones, have had appendicitis, a neuroma, and fibroadenomas and ADH. So who knows what is in there? I will come back in July and let you know what the surgeon says. If he wants to try pred, maybe, but I would rather just take that node out.

[Ken_PA]

Hi, again. As this is all guesswork, I'd offer the opinion that since the growth of node #1 has apparently plateaued, that should take some of the worry away about not getting the excision quickly. Also, I think it tends against cancer, because I don't know of any process by which cancer slows -- unless somehow your immune system suddenly got activated against the cancer and is just now killing cells at the same rate as they are multiplying (not likely, I'd think). Or the cancer lost a tumor suppressor gene, also not likely.

I think we'd talked about plateauing and how that might indicate an inflammatory (and not a malignant) process. But if so, how could an inflammatory nodal pseudotumor get so big, since it can't stretch larger than the max of the capsules stretching limit?

Well, maybe this way: "with extension into... perinodal tissue"
http://www.pathologyoutlines.com/topic/lymphnodesinflammatorypseudotumor.html

Or maybe Mocha is right.

The right forum to ask on? At this point, I'd seek out some online pathologist. I remember one called WashingtonDeceit on youtube who has developed a website of his own. That could answer about 3cm for a non-cancerous node.

I remember your own path report suggested clinical correlation - your new clinical evidence (plateauing) seems to tend against cancer.

Your appt with surgeon gives you enough time to ask GP to try prednisone, and if that results in a very big reduction in tumor size, that can be a big clue that this is an inflammatory process. A small reduction won't say too much, I'd guess.

Even so, you might have an unusual kind of nodal inflammatory pseudotumor. There's an expression among docs: "unfortunately for you, you are an interesting case".

I'd ask to try pred, since you are waiting anyway. I should have thought of that before. I'd go for pred instead of dexamethasone, since the purpose is diagnostic and dex might have more cytotoxic activity in cancer and that might confuse things.

============

That page also has a Ddx section. Anaplastic large cell lymphoma? Maybe, but you don't have Reed-Sternberg resembling T-cells. You can find pictures, they really do look like owl eyes because of how the nucleus looks - a path wouldn't have missed that, I'd think.

You can maybe ask for your previous needle sample to be stained for CD30.

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If you do try pred, please ask about how to mitigate glucose effects.

[sainttsp]

Hi, thank you for your answer. I have read over a lot of both yours and Ken's answers to other questions and I find both of you very knowledgeable and very level-headed.
I do not have a biopsy date yet; only a consultation date on July 8th. I have no idea what sort of time frame I am looking at after the consultation for the biopsy. I think a lot will depend on if I will be put under a local or general anesthetic. Welcome to Canadian health care. This is actually fast compared to the other surgeon who gave me a consultation appointment for mid-August.
As to the rate of growth? From first noticing it to now has been nine weeks. The largest seems to have stopped growing rapidly but I can now feel another one next to it that has grown quite large. That one has only been large for about two weeks now, but both radiologists could always see that I had quite a few nodes enlarged in that area.

[Mochadelicious]

It's hard to say for sure but after reading your previous posts and conversations with Ken (who is an amazing resource by the way), I'd say Lymphoma is still very likely.  

Honestly I'm flabbergasted at the slow rate of speed it has taken to get an excissional biopsy.   Perhaps the small amount of growth in the groin nodes since your last scan is indicative of a slow growing lymphoma, but I can't remember how long you said it took for your largest node to get to 3 cm.  

Kudos to you for insisting on further testing and not letting your doctors give up on finding a diagnosis.  Do you have a biopsy date set yet?