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]

Hi again, Tina. This looks very much like what is called 'sterile inflammation' that mimics a UTI. That brings us back to an overactive immune system. That does therefor tend a little to supporting the idea of having Castleman's - a mystery immune condition..

I wouldn't take any more antibiotics unless there is a positive test for infection first. Too much antibiotics over and over can be harmful.

Do you have intestinal problems? That would contribute.

When will your genetic tests be back?

[tina7]

Hi Ken.... I had a colonscopy last month and they removed two polyps that were fine and said I have diverticulitis, but thats about it. I am having an Ultrasound of bladder / kidneys tomorrow morning and my doctor sent the urine to the lab again. The first part of the report came back with blood in the urine but the culture (indicating if theres infection or not has not come back yet ) my doctor thinks it will come back again with no infection.  I just had the genetic test done and I have a follow up with Onco on April 29th. Im so tired of all this.. not to mention Ive gained 12 pounds just from eating to stay alert as I have no energy and eat to try and combat that... which is not the best thing to do.  Thank you for your response... I was worried about this being bladder cancer and got scared. do you  know off hand  if there is anything I can do for this condition?
Again, thank you so much for your help. God bless.

Tina

[Ken_PA]

Oh no, that was some terribly bad luck, Tina. I can't imagine why the GP talked that way - completely out of line and causing so much needless anguish. What he was apparently referring to is called a "stem cell transplant" - that is the most extreme treatment and there is no reason to think that would be called for right off the bat. I'd be very leery of what he says about cancer from now on.

Terrible luck again with the 1.5 hour wait, that must have been awful to endure given the prior experience with the GP. At least your luck finally turned good, with being told by the onco that you would be only put on watch-and-wait, with no immediate treatment needed. We had discussed that as being the best thing that an SLL patient could hear.

Also predicted was that the onco would say that you have SLL. If I understand you correctly, with all the stress, you didn't really have the opportunity to ask about Castleman's. After a week or so to put this stress away, you might email to him and put forward the case about Castleman's. Or... wait a minute, how about we just wait for the results of the genetic testing? If no SLL gene mutations are found, only *then* is the time to bring up Castleman's. There is still some hope for that. But now is the time to just coast and to relax if you can. When you do think about this, you can hope that the onco will say, "wow, this really is a strange case... there were no SLL mutations found". Maybe that's not likely, but it is possible.

You are a very reactive person and to my mind that comes along with a very reactive immune system. (There wasn't really time to ask about if you've had a long personal history, or family history, of unusual immune conditions.) So yes, removing the silicone is a great idea. You might find that you feel much better all around physically and emotionally, starting in a very short time. If so, that means you were indeed having some bad reaction and that would include inflammation.

I'm sorry to hear you had such a rough time; but very glad that it turned out pretty well, all things considered. I'll certainly be wanting to hear the updates. Take good care of yourself.

[tina7]

Hi ken, Its me again, sorry to bother you.. I have a  question and although its not really lymphoma related.. you were so knowledgeable that I thought I would run this by you.... In January I woke up with pain in the bladder... and went to the dr.. we both agreed it was a bladder infection ( I have always suffered bladder infections throughout my life.. in fact at one point about 20 yrs ago or so my previous dr referred me to a urologist and he did a cystoscopy, which was fine and they gave me long term mild antibiotics  for alleviate recurrence). having said this .. I had an infection last July and then this January and then it came back March 7th or so when all the CLL stuff was happening to me.  On March 7th, my dr gave me another prescription for cypro and sent the urine to lab... the results were that there was NO infection present, but microscopic blood in urine. I finished the antibiotics on March 21st and had a follow up today March 25th... apparently the blood still shows up in my urine so dr sent urine off to lab again and booked me an ultrasound of kidneys/bladder.  When I had the full body CT scan with contrast.. it indicated that the kidneys were normal, but didnt not mention the bladder.  I dont see any blood in my urine when I go to the bathroom so its mcroscopic only,I checked my results on line just now and it indicates blood again in the urine but its awaiting the rest of the results re infection.  Im scared again.. in your opinion do you think this has anything to do with the CLL? again... thank you so much for your wealth of knowlege and support and expertise.  I cant tell you how much I appreciate it.
Warm regards

Tina

[Ken_PA]

Well, I don't claim to be an expert on SLL but I think all this info will help you tomorrow. The onco might be surprised at how much you know - some docs appreciate that :)

Yes, after hearing all your info and history, I think you have every reason to hope that this is not really SLL. It is very strange, and you had a sense about that all along. So you can rightfully give yourself kudos for that.

Needle biopsies can give false negatives, if by chance the bad spots are missed. But they did take a lot of samples so that's less likely.

If you have the mental energy, you can reread this thread to coalesce the knowledge. There was a lot in just two days. Best of luck to you. I will certainly be waiting to hear what happened.

[tina7]

Hi Ken,

I had my appointment yesterday. It turned out to be an extremely emotional day .....I literally had to take 2 doses of ativan.  It turns out that I was feeling rather unwell on Monday and returned to my GP in the afternoon well before my appt with the onco.  My GP had the last pathology report from the biopsy, he decided to review it with me and it basically confirmed the diagnosis of CLL/SLL. He continued to tell me that I would need alot of chemo and would need to take a leave of absence from my job.. and it would be approx a one year recovery period for me.  I was not prepared to hear this, especially when I had gone to see him for another issue, which had nothing to do with the CLL/SLL  and I was totally alone. I never even got to show him the material from the links (re castlemans disease) to him as I had printed it.  It really made me sad and depressed to the point where I could not even drive myself home.  Anyways, when I did finally get home, I was a total mess and waited for my husband and my cousin to meet me so we could proceed to the onco app which was later in the day. When we got there, the onco was one and  a half hour late... so we waited patiently. He has been my onco for 10 years now and i really trust him, so went in and just listened to what he had to say and basically he confirmed the diagnosis and said from this point on he would be monitoring me for the rest of my life and would be sending me for CT scans and blood work every 3 months for a period of time and then 6 months etc and then yearly.  Interestingly... he is also sending me for blood work for genetic mutation. They will check the nodes on the CT scan and if they get quite a bit larger then he would proceed with a type of chemo (in a pill form) and said that if this becomes the case that this treatment is highly successful. In the meantime he doesnt want to treat me now unless it gets to that point. He also said this is much better than if it were a breast cancer recurrence (as that would have been a disaster.. given that I had alot of enlarged nodes).   Given the circumstances I felt this was a much better and more positive outcome than what my GP had given me.  Also.. I have breast implants (from my reconstruction) that that were recently recalled due to a  lymphoma that is caused by implants. (Breast Implant-Associated Anaplastic Large Cell Lymphoma (BIA-ALCL) .  Initially there was a scare that - this is what I had... but they outruled that type of lymphoma in the pathology report. Having said that... they have recommended that the implants be removed sooner than later.... as the node I had was extremely close to the right implant... and there was talk at some point that inflammation may have been caused by my body now rejecting the implants .  Today I received a call from the hospital setting up a time for me to have the implants removed next week .  Once this is done then I have to follow up with the onco as requested. So its been an emotional day/night for me.  I will keep you posted and am so grateful to have met such a kind a helpful person.  You have no idea how much you put my mind at ease and helped me during this very difficult time. THANK YOU.  Will be in touch with more news when I receive it.
Kind regards
Tina

[Ken_PA]

If the onco were to say: let's start the harsh type of chemo ASAP, I'd be surprised and ask why we don't test first to see how aggressive it is. I'd want to think that over for sure.

[tina7]

Im actually at a loss for words with respect to the last appt I had with the onco... because at that time - we only had the fine needle biopsy report and it indicated atypical hyperplasia and further investigation is required (by removing the whole node) to get a definitive diagnosis. The onco said it was good news because really there was no cancer according to that report and he felt they got 3 really good samples with the needles so if there was a cancer that was aggressive something would have showed up. So he agreed to have the node removed altogether to get to the bottom of this.  I agree in that I would hope that he would not start with a harsh type of chemo and investigate further. Its just of strange how they called me to come tomorrow when my appt was scheduled for Wed..... it kind of made me think - is there something further they know, perhaps they have the other part of the report. I only have the preliminary (the first one I sent you) and the fine needle biop report plus CT scan.
And then of course one wonders... what this really is as it is somewhat strange the way it came about with the one node that was hurting me and inflamed (on the far right of my right breast way below the axilla) everything else was found as a fluke. I had no idea because all those other nodes are really deep and even my family gp could not feel them. Not to mention the yearly appts at the onco who also never felt them. Its all so strange.
Sorry for the long msg.
Thank you again.
Tina

[tina7]

PS ... I hope Im not keeping you up or away from your family. I am from Canada and it is 5:40 pm here.

[Ken_PA]

The *loss* of the fatty hilum does not necessarily mean cancer, because other conditions can cause loss of the hilum. But the presence of the hilum almost always means not-cancer, unless as mentioned when the cancer is still very new and small. That's because the cancer cells replace the normal cells in the hilum. The fatty hilum would mainly be mentioned on ultrasound reports.

"... what they found on the preliminary... is that always more or less 100% accurate in your opinion?"
What they found about CD5+ etc would not be in error (unless they mixed you up with somebody else's tests). But the conclusion might be in error or be uncertain. Also, what was seen with the staining+microscope could be uncertain as to what it means; it might not point clearly one way or the other, like the GP says.

The onc might say you have atypical lymphoid hyperplasia, let's wait and see if it changes. Or might say: let's do genetic tests to look for cell mutations that define SLL -- you should definitely want that done. The onco might say: let's schedule another CT scan in the future to see if the nodes continue to grow or not.

I didn't find anything definitive about the CD23, sorry. Overall that's up in the air.

Good luck tomorrow, Tina! You have a great attitude.

[tina7]

Thank you again Ken for this info... it really helps me to understand more of whats really going on! You are a godsend and a wealth of knowledge.  I guess theres always wishful thinking as this is all so new to me and is a foreign language.  At the end of the day I am hoping for the best outcome (and really hope he doesnt send me for a bone marrow biop as I am hoping if its there ... its just in the nodes and no where else). Thanks again for taking the time to research the CD23 for me.

Will send you info tomorrow eve after appointment.
With gratitude
Tina
Tina

[Ken_PA]

If the onco thinks for now it is SLL, they might want to do some tests to see how slow or fast it will behave... prognostic markers.

[tina7]

Im so glad that I came to this forum and had you to assist with all my questions. If I could I would bring you the finest bottle of wine to show you how grateful I am for all your valuable insight. Really... at this point its the only thing thats keeping me from falling apart. You are absolutely right about the fatty hilum, because I thought I read that somewhere that it was in favor of not being malignant if the fatty hilum  was present. But both the doctor doing the biopsy and the technician basically told me otherwise... I did not find them to be very pleasant and was scared to death so I chose not to ask further questions. For the staining....Yes I was referring to the results being CD5+ etc.  Im so sorry, Im really in the dark with all the lingo on the reports.  I actually typed them out exactly as they read as I dont have a scanner otherwise I would scan them to you.  Its strange though, how these reports dont mention the fatty hilum, unless its in a different lingo and I missed it. Just curious though.. and please forgive me if Im repeating but what they found on the preliminary... is that always more or less 100 % accurate in your opinion? Have they ever been wrong?

Thank you again and thank you for looking into the Castleman's and CD23. You are amazing! God bless.

Tina
Ps - will send you a note tomorrow evening after my appointment with onco to let you know what happens.