help on a pathology report for Lymphoma

[tina7]

Hello, Can you help me please... I am so sad and desperate. I am a 10 yr breast cancer survivor (DCIS/LCIS) no spread. no chemo/no radiation just tamoxifen for 5 yrs. Double mastectomy with silicone implants.Last month I felt a lump adjacent to my implant / lower armpit. Dr. checked and said it was either a lymph node or cyst. From there ended up with US/ which found 4 enlarged nodes under arm pit. A fine needle biopsy was done and a body ct scan. Findings on CT scan multiple enlarged nodes under both arms/groin/neck and some abdomen. Needle biopsy (3 samples taken) showed atypical lymphoid hyperplasia. suspicious for non hodgkins lymphoma, but recommend to remove whole node to get an inoperative consultation with a pathologist to establish the diagnosis. The whole node was removed and this is what the report reads: Flow cytometry report. Diagnosis -Involvement by a CD5+ B-cell lymphoproliferative disorder, kappa restricted with chronic lymphocytic leukemia (CLL)/small lymphocytic lymphoma (SLL) phenotype (see comment).. under comment it says correlation with biopsy findings is advised.  FLOW INTERPRETATION: Overall speciman viability is 50% the lymphocyte gate accounts for 99% of total . B-cells account for 80% of the lymphocyte gate. Accounting for 92% of these cells is immunophenotypically abnormal CD19+, CD20+(dim), CD79b+(dim), CD5+,CD10-,CD23+, CD200+(Bright), CD11c, CD25-/+,CD103-,CD123-,CD305+/-,CD27+,CD38-, IgM-,Kappa surface light chain restricted population of cells, including a minor subset with increased light scatter properties. T-cells account for 16% of the lymphocyte gate (CD4:CD8 ratio = 1.7:1) The expression of CD2, CD5, CD7, CD10, CD25, CD56, CD57 and CD 279 show no diagnostic abnormalities. NK-cells account for <1% of the lymphocyte gate and show no immunophenotypic abnormalities. Pre Interpretation data: cells were stained with a 3-tube panel to assess for involvement y a lymphoprofilerative disorder. The diagnositc panel included the following combinations of fluorochrome-conjugated primpary antibodies: Tube B1 (CD45, CD14, CD19, CD20, CD79b, CD3, CD5, CD10, CD27, CD38, IgM, kappa lambda) Tube B2 (CD45, CD14, CD19, CD3, CD5, CD23, CD200, CD11c, CD25, CD103, CD305, CD123, CD30)
Tube T (CD45, CD14, CD2, CD3, CD5, CD7, CD4, CD8, CD56, CD57, CD45RA, CD45RO, CD279) Data were acquired on a BD LSRForesta flow cytometer and analyzed with FACSDiva software using a CD45/side scatter gating strategy to identify lymphoid lineage cells. Clinical history: multiple enlarge lymph nodes (FNA supsicous for NHL by report.
I have always had lots of inflammation, my white blood count was always slightly high but not by much. There are issues with my implants and my family gp thinks this might be a result of my body rejecting the silicone implants and feels that if they are removed the problem might resolve itself. I am awaiting now to see my oncologist again. I am so confused and sad... does this report mean this is exactly what I have? or does it mean its a possibility but not for certain... could this all be inflammation. Any help or info you could provide would be so appreciated right now as Im not sure what to make of all of this.
Kindest regards.  
Thank you and god bless.

[Ken_PA]

The onco is probably positioned to say it is SLL and there might be watch-and-wait. You should be prepared to make the case that a rare variation of Castleman's should be looked into, at the very least to rule it out or else to discover that it is the actual true cause here.

When I get back later I'll look into Castleman's and CD23.

[Ken_PA]

When you say "staining", are you referring to the results being CD5+ etc? That's actually the immunohistochemistry testing, it uses glowing antibodies in a flow cytometer machine. On the other hand, I don't see where you posted any staining+microscope/pathology reports; but they should already be in your file. If it was done intraoperatively, the results were known right then. The onco might also order genetic (molecular) testing to look for mutations.

The results of the excisional biopsy testing (including the flow cytometry) supercede everything that went before. Though I can't imagine why anyone would say that the *presence* of a fatty hilum doesn't matter, except if it was a brand new and developing lymphoma -- but then the node probably wouldn't have been large enough to feel.

"Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope."
That's the spirit :)  The treatment might be the same for Castleman's as for SLL, as the aim in both is simply to kill off B cells. If the onco says you should initially only have an antibody treatment called Rituxan, that is the mildest thing possible and there is no reason to resist having that. Yes, nodes should shrink unless there is scar tissue from inflammation (fibrosis) built up inside.

"is there even a possibility that it could come back as something else other than a cancer (or cancer mimic)."
Yes, though I don't know what... except maybe possibly some exotic strange new variant of Kikuchi Disease.


And no, it's not pestering at all :)  Ask away with more questions if you like. And did I miss answering any?

[Ken_PA]

"My GP said that whenever his patients have any type of test done like this it always comes back with a difinite diagnosis and he is also stumped as its still not very clear. "

Yep, that is pretty much what is meant by "atypical lymphoid hyperplasia". It's seems to be in between cancer and not-cancer.

Can you send an email to the GP and ask, "what about Castleman's mimicking lymphoma?" If the GP is open minded, send the two links about CD5+ and monoclonal. (Most docs would immediately think that Castleman's is not monoclonal, but the case study shows that it is very rare but possible.)

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Make sure to let me know how your Monday appt goes.

[tina7]

Yes I definitely will. Im a little nervous because initially my onco appt was scheduled for Wed Mar 13, but the office did call me at the end of the day on Thursday (they are closed on Friday) to tell me to come in Monday (tomorrow). So Im not sure why, but am very frightened. Again, thank you so much for everything. You are very kind and have been very helpful.
With gratitute
Tina

[Ken_PA]

Well, right away I'm going beyond just the simple here, but I'll still include this link to a paper showing that Castleman's can be CD5+

"Our study confirms that CD5 expression is a common feature of the B-cells in the expanded mantle zones of Castleman disease, and that this finding should not necessarily raise alarm for involvement by a CD5+ B-cell lymphoma."

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3834164/
"Increased CD5 positive polyclonal B cells in Castleman disease: a diagnostic pitfall"   2013

By saying "pitfall" they're meaning--> make sure you don't mistake Castleman's for being lymphoma.

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Next, here is a case study showing that Castleman's can be monoclonal. That's very rare, but possible.

https://www.jstage.jst.go.jp/article/jslrt/55/2/55_103/_article
"Multicentric Castleman Disease with Monoclonal Incomplete IgH Restriction: A Rare Coexistence"

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I would take those two url's along to the oncologist appt. No doc should care what I say, of course. But they should take notice of those journal articles because they are "authoritative sources".

[tina7]

Hello Ken,
I cant thank you enough from the bottom of my heart for all the work you have done for me.  I will bring these 2 articles to my onco tomorrow and will let you know the outcome.  My biopsy was done on Wed March 8th and the first report (staining one) was given to me on Thu March 9th. In your opinion... do you think the onco will have the rest of the bio results by tomorrow? They didnt say how long it would take for the rest of it to come.  Im prepared for the worst but at the same time want to be hopeful and thank you for giving me hope.  You've been so kind to take time out of your day to research my reports and I am so grateful for that. Also.... sorry to pester you... but in your opinion - what do you think that the chances are that the rest of the report will come back to confirm the staining diagnosis or is there even a possibility that it could come back as something else other than a cancer (or cancer mimic).  If it were castlemans disease.... would you know off hand if the nodes ever go back down and treatment options. I have an enlarged node on side of my neck... it kind of feels somewhat mid soft/rubbery and palpable. You can only see it slightly if I tilt my head sharply all the way to the side.  And in the worse case scenario... If i need chemo - do you think it would be for more than 6 months (do I lose hair with the type they use).  I am so sorry for all the questions... right now I feel that you are the only person that has given me any insight to what might be going on here.  I keep wishing and praying that this is a bad dream and I'll wake up and wont have to go through this again. I hope the onco does not send me for the BMB... thank you for giving me hope.

Warmest regard and sincere appreciation.
Tina

[Ken_PA]

"An excisional biopsy of the node is suggested with request for an intraoperative consultation with a pathologist to establish the diagnosis."

That means they quickly send the removed node to be tested before sewing you up, so that if the node is definitely found to be cancerous, the surgeon might go ahead and remove all the other bad nodes within reach.

But the surgeon didn't remove other nodes, so that seems to say that there was *not* definite cancer found at that point.

The pathology testing is done with a microscope and the staining. But the flow cytometry testing is done much later, as the sample has to be sent to a special, advanced lab. That's when the CD5+ and CD23+ and the 'monoclonal' was found.  

But Castleman's can mimic SLL. And Casteman's can be CD5+ and monoclonal.

[Ken_PA]

I'm very happy to help, Tina. Since your appt is tomorrow, I'll post a few things today simply and leaving out a lot so as not to overload you.

I think that a lot of people get themselves worked up way too much over anticipation of a bone marrow biopsy because they've heard that it's pretty bad. Then when they finally have it, they experience it as worse than it really is. So they tell others how bad it was, and the cycle gets repeated over and over.

I was in the room when my father had it, it was no big deal for him at all. It's over in a few minutes, too.

It's not testing for cancer in the bone. The B cells (and all the blood cells) are made in bone marrow. When a blood cancer gets into the marrow, the production of good blood cells gets reduced. But since you don't have reduced numbers of blood cells showing on your CBC tests, the docs might not order a BMB for you.