Minor things about the axillary path report:
"aggregate of lymph nodes measuring 3.0 x 2.5 x 1.0 cm."
Round is bad, oval is good. That is round. But in actuality, it probably was two together. Two ovals can make a round.
"lmmunohistochemical..."
That'd be the flow cytometry. It generally looks for ceratin protein molecules found on a cell surface. Such as the CD5 etc that has been mentioned. Different immune cells have different CDs on their surface, and for example B-cells are the only ones with CD20.
"...and/or in-situ hybridization"
That's the FISH I'd mentioned. The ISH in FISH. It generally looks for mutations in cell DNA.
From the other biopsy:
"left inguinal
2.0 x 0.8 x 0.7 cm"
That's oval, which is good. Do you remember if they did an ultrasound on that node, before biopsy?
About saying "we"?
That's you the patient's mother, and me. In a cooperative effort. So as not to appear to be talking down to anybody. But if that's confusing, I should stop saying it that way :)
Angela, please remind me of what questions I've not answered.
"I thought I had specified that he was diagnosed with PTGC already..."
Yes, you certainly did. But I didn't know if that was the only diagnosis. They can coexist. Also, there were scattered references to "suspicious of lymphoma" and "suggestive" of lymphoma. But all that is cleared up now from the axillary path report. Lymphoma is off the table. There is no lymphoma.
So let's move immediately to your most pressing question:
"Also, can a person be borderline or on the verge of cancer developing?"
From what I've read, the chance is very small, at 1-2%. Also, the studies show that there is that small association, but **association is not causation**. If you want to go into great detail on this, please start a new post - so things don't get lost in this long one.
"How might this relate to Granulomatous Disease, if at all?"
I think it certainly does, because having one kind of immune dysfunction makes having other kinds of immune dysfunction more likely. Please start another post on this topic, it's very interesting. Also, doing that might help you to understand what happened to your mother. IIRC, enlarged heart, with no significant atherosclerosis/blockage, is what caused the heart attacks. Her immune system going awry was probably behind that somehow. And the repeat stenting is also odd.
There's also the pattern in your sons lungs, IIRC similar to hers, as you've pointed out.
"Also, and maybe you have no idea, which is fine obviously, but what would have to change for it to turn into a cancer?"
Inflammation can tend toward developing malignancy. Every time a cell divides, there is a chance for a mistake to occur - a mutation. Inflammation can lead to an increased rate of cell division. In fact, that's why a PET lights up on areas of cancer AND inflammation: there is increased "metabolic activity" in each.
Also, dysfunctional immunity can mean that bad cells don't get destroyed as they should. Also, inflammation around new cancer cells makes them more likely to thrive, rather than just fizzle out.
"Also, is the NLPHL the only one that it could turn into?"
Offhand, that's the only one I've seen "associated". But we can look into other possible sequelae or long term complications.
"...I search the different terminologies, and references that are in his reports."
Excellent. And that's burdensome at first, having to learn all the new terms. So bravo.
Angela, I think we've got this figured out. It's good news.
-- Your son has PTGC, which can create a lot of enlarged nodes - just as lymphoma can, but lymphoma is cancer and PTGC is not-cancer. Other words for not-cancer are "benign" and "reactive".
-- Even for a pathologist using a microscope, PTGC looks a lot like a certain rare type of lymphoma called Nodular Lymphocyte Dependent Hodgkin Lymphoma (NLPHL). Both even tend to occur in young children.
-- At some point, there was talk of a treatment plan. But PTGC is not treated, they just leave it alone and it plateaus out or even shrinks on its own. So when they discussed treatment, they might have still believed it was NLPHL. (But then NLPHL is 'indolent', which means 'slow growing'; so we have to keep that in mind as indolent lymphomas grow so slowly that they might not get treated for a long time anyway. Nothing is simple here, sorry.)
-- Further analyzing/testing of the excised node might have confirmed that it is PTGC (not-cancer). This is what to hope for. It's not only the best outcome, it's probably also the most likely.
-- What we want is to see the path report say that it is PTGC, not Hodgkin Lymphoma. Or else followup testing like 'flow cytometry' saying it is PTGC not Hodgkin Lymphoma.
-----------------------------skip the rest below if you like-------
I'll just post these here for the future:
[The 1st is very technical, about the difficulty in telling the good from the bad condition. Note that it's recent. But don't tackle that yet.]
Pitfalls in the Diagnosis of Nodular Lymphocyte Predominant Hodgkin Lymphoma: Variant Patterns, Borderlines and Mimics 2021
https://www.mdpi.com/2072-6694/13/12/3021/htm
"The key feature that permits the separation of PTGC from NLPHL is the lack of LP cells in PTGC, along with the lack of PD1 rings. Identifying LP cells, however, may be confounded by prominent centroblasts, follicular dendritic cells and histiocytes, which may falsely impart a resemblance to LP cells. In such cases, looking for extranodular LP cells can provide an important clue. Furthermore, while both entities show a range of misshapen nodular structures, NLPHL nodules frequently exhibit ragged outlines in comparison to PTGC nodules, as best visualized on an IgD stain. A BCL2 stain can also provide helpful information, although the BCL2 expression in paracortical T-cell zones makes the visualization of a clear separation from mantle zone B cells less optimal. Increased IgG4-positive cells have been described in association with PTGC but not NLPHL, and therefore, IgG4 is another useful marker to separate PTGC from NLPHL [51]. Given the often-subtle differences between PTGC and NLPHL, awareness is important to avoid misdiagnosis."
[Te 2nd one refers to PET, in PTGC versus Hodgkin Lymphoma. Your son's PET report did not look like Hodgkin Lymphoma to me.]
Progressive Transformation of Germinal Centers in a Pediatric Patient Initial Evaluation and Follow-Up With Serial F-18 FDG PET/CT Imaging 2011
https://journals.lww.com/nuclearmed/Abstract/2011/10000/Progressive_Transformation_of_Germinal_Centers_in.38.aspx
Why is a PET scan ever done? It generally goes like this:
A bump is found. If it's very suspicious, then a scan, usually an UltraSound, is done to measure the dimensions. Oval is good, rounded is probably bad. The US scan can also see the inside of the node, to look for signs of cancer. (E.g., if the inside is destroyed.)
If the scan is tending to something bad, then next comes a biopsy. There are two choices. If the node looks only somewhat bad, a biopsy sample will be taken with a hypodermic needle. But if the node seems really bad, then a surgical resection is done. A resection gives much more sure results, because they can examine the whole excised node.
If the biopsy finds cancer, then next a PET scan might be done. It's something like a whole body snapshot, done to see if the cancer has spread or not. It looks like a photograph negative, except some spots "light up" from either inflammation or from cancer. In your son's case, the results look like various spots of probable inflammation - and are not like what would probably be expected from cancer. Also, if the biopsies did not find any cancer, then any spots on the PET that light up are likely not-cancer.
Sorry, it's complicated but nothing is simple. It will take a while to absorb, especially since your son's case is not straightforward - which is better than being a straightforward case of lymphoma.
Here is why the path report on the axillary biopsy is of prime importance. Everything up until the biopsy is merely justification to perform the biopsy. The results determine what happens afterwards.
Docs can't do a biopsy on everybody with swollen nodes. It's a risk versus benefit analysis. Often, a biopsy can be a way to rule out lymphoma. Then the real cause of the swollen nodes can be pursued.
If scans point toward lymphoma, the biopsy is a way to confirm that. Scans and blood tests alone can't confirm anything.
Still, sometimes a biopsy shows lymphoma, even though scans and other preliminary evidence tended toward immune dysfunction. A lymphoma can even cause immune dysfunction. But that is the RAREST possibility.
To my mind, everything with your son points to immune dysfunction. But we need to see the path report to be 99% sure.
If the path report is equivocal/ambiguous, then we'd look to family history (Fx) and all the rest to tip the scales.
Btw, what usually happens when docs find a cancer is that an appointment is set up to begin treatment ASAP. That's usually, but not always, the case. That apparently didn't happen with your son. We should want to know why not. If there is no cancer, then why was the PET done? (Sometimes, treatment for a slow growing lymphoma can be put off for years.)
The one crucial piece is still missing. That's the path report on the axillary node.
"A piece is placed in RPMI for potential flow cytometry."
We want to see that report, for 'flow cytometry'. That's *if* it was done.
Also anything that says 'FISH'.
"Findings are suggestive of lymphomatous involvement of lymph nodes in the axilla and chest wall and to a lesser extent in the neck."
That radiologist might have concluded differently, if they were aware of the family history (Fx) of immune oddities.
"old granulomatous disease"
with "old" meaning it was there for a long time, not recent. But let's leave that for later. EXCEPT that whenever you talk to any doc about your son, you tell them about your mother. Every time.
"Reed-Sternberg cells are not seen"
That's sort of ruling out Hodgkin's Lymphoma (as opposed to non-Hodgkin's Lymphoma, which never has Reed-Sternberg cells)
Angela, at this point I don't see why the PET/CT was even done. The biopsy results seem at most equivocal. (There's the BCL-6 for discussion at a later point.) Even the excised node was oval, not round.
Didn't any doc tell you what the diagnosis is??? Is this Mayo?
[I'm trying not to say that I think somebody jumped the gun in ordering the PET and talking about treatment.]
Another oddity, the path report says "SPECIMEN(S) REC'D: Lymph node, left inguinal"
inguinal, not axillary
Which person are we talking about there??
"Kind of irrelevant though"
Maybe not.
And do you mean "Chronic granulomatous disease"?
Can you get the biopsy report on the portal? The sooner the better.
The docs believe he has lymphoma. That is what they are proceeding on.
"I'm curious what made you say it's a lymphoma"
From this: 'status-post gross total resection' apparently says that there was a surgical biopsy (not merely a needle biopsy).
...and then this: 'PET-CT to plan initial treatment and stage disease' which is what's done after a diagnosis has already been made by biopsy.
Can you post the biopsy report?
Btw, the thymus is where T-cells go to mature. Killer T-cells fight cancer, but they also fight virus and other infections. Other subtypes of T-cells have different jobs. The low SUV in the thymus says the T-cells are probably multiplying to fight something.
In your profile, you list autoimmunity plus granulomas, suggesting that family history. So if there were no biopsy proven lymphoma, altogether there is ambiguity and there wouldn't be reason enough to believe there is lymphoma. There is, e.g., that one spot which is either fluid (i.e., not-cancer) or else it is necrotic -- which in turn can be cancer, or not-cancer (such as some granulomatous disease).
Sometimes, granulomas form because there is some real disease like TB, which is usually mainly in chest and neck. But sometimes granulomas form for mysterious immune system dysfunction, as with Wegener's or sarcoidosis, also in the chest and neck.
(https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7829575/ "Causes of necrotic features in fine-needle aspirates from cervical lymph nodes" 2021)
But since apparently there is biopsy proven lymphoma, then it's reasonable to suspect that all enlarged nodes might be lymphoma.
However, the one large node is oval, which tends toward that one being not-cancer. Lymphoma tends to make nodes get rounded.
The node sizes are not very large. Overall, there is ambiguity. So if the biopsy also has ambiguity, that changes everything. But if the biopsy is very certain, then many of those other nodes could merely be reacting to the lymphoma (and are not-cancer) - which would mean the lymphoma is not spreading rapidly.
Yes, it's complicated. Are you suspecting that it's not really lymphoma? It's possible to ask for a review of the biopsy.