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, Tina. Yes, I do remember you. It's very good to hear that removal of the implants has let the nodes go back down to normal. That's wonderful news. Hopefully, your overall health has improved also.

I wouldn't worry about the WBC. First off, it's only slightly high. Also, it might be up a little, just because of stress. Think of it this way: let's say you are in the woods and you see a bear. The stress reaction involves putting more immune cells into circulation, in case the person gets wounded. That same reaction can occur even if there is no physical danger. Also, you'd said in the past that your WBC is usually a little high. Overall, there is no reason at all to think of any blood cancer.

As for the headaches? I don't know, except that if they are not severe, that might be from stress, too. Nobody can blame you for being very stressed, after everything you've been through.

Since your enlarged nodes and everything associated with that turned out to not be from any spreading of cancer, there is even less reason to think that you might have a brain tumor. In fact, having a very reactive immune system can actually be protective against any future cancer.

And thanks for the compliments :) Write again anytime if you have any other concerns, it's not a bother at all. I think you'll be very happy with the results of your upcoming CT.

[tina7]

Hi again Ken.  first of all THANK YOU!!!! You brought me out of my depressed mood last year and once again you are giving me much hope and encouragement.  If its not too much trouble.. may I ask.. if there were any signs showing up in my blood test results indicating  there is CLL... what else would show elevated? Because I am hoping this slight elevation of the WBC is from just anything... but I am curious would it be the lympocites that would be elevated? I am also hoping that my CT is normal.. I dont have a scheduled date for it yet.. It should be within the next month or so. and then Onco in Sept.. I will keep you posted on the results. Lastly... .have you ever heard of the CLL almost completely disappearing 8 months after the removal of the implants... the family dr and onco both think that the silicone implants played a role.   Anyways... thank you again so so so so much for your quick response.. I literally was up all night .. it is 8:06 am here and I will be leaving for work. BUT AGAIN.. I am so grateful for your wisdom, help and support to get me through this.

Kindest

Tina

[Ken_PA]

I believe that CLL is known for only rarely going outside of nodes. I'd say that it's important to be aware of anything that seems suspicious, but then to not get carried away with that and drive yourself ragged. Sorry, I know that must be very difficult to do.

However, you did have the experience with the bladder that was alarming, but turned out to be a false alarm. I hope you don't have any more alarming things; but if they unfortunately do come then there is reason to believe that they, too, can be false alarms.

When my father had lymphoma, I always tried to learn as much as possible about the range of outcomes that were reasonable to expect. There's always a range of what might happen. Then I chose to deliberately believe the best out of those.

[tina7]

Hello Ken, Hope all is well with you and your are safe with all the COVID issues in the world.  Im not sure if you remember all my issues when we last spoke a year ago.  But just wanted to thank you again for all your help the past year .. you have been a wealth of knowledge for me and kept me from breaking down on more than one occasion. Not much has happened in the last year other than that my implants were finally removed. Strangely I had a CT scan 6 to 8 months later.. and the onco was surprised to see that the report read that my nodes were almost of normal range and that treatment was working... however I had not received any treatment. This was good news.  I continue to move along, and am now preparing for my next routine CT Scan to see how things are moving along and had some blood work done.  These are the results from the blood work:  The only thing that stands out that they flagged was the WBC it is reading at 10.7. (the rest seems to be within reach - the lymphocites and monocites seem to be ok)  I believe normal range is up to 10 for the WBC.  I am so worried now ... is this 10.7 WBC reading something for me to be worried about? I dont see the onco until Sept as I am awaiting for the next CT.. which I am hoping is a positive scan like my last.  Also.. a month ago or so.. I started to experience headaches on the upper right side of my head and asked the Onco secretary to request a scan of my head to be done as well since they are doing the whole body anyways.  I am now worried that I have an aneurisim or a tumor. I am so sorry to bother you.. but you were so helpful and a godsend to me last time.. I wondered if you could shed some light once again.  God bless you and thank you. I am so sorry to bother you.  Kindest Regards   Tina

Hematology
WBC
A10.7
4.0-10.0
10*9/L
RBC4.49
3.50-5.00
10*12/L
Hemoglobin 127
115-155
g/L
Hematocrit
0.38
0.35-0.45
L/L
MCV
85
82-98
fl
MCH
28.3
27.5-33.5
pg
MCHC
333
300-370
g/L
RDW
13.1
11.5-14.5
%
Platelet Count
342
150-400
10*9/L
Differential
Neutrophils
6.7
2.0-7.5
10*9/L
Lymphocytes
3.0
1.0-4.0
10*9/L
Monocytes
0.8
0.1-0.8
10*9/L
Eosinophils
0.1
0.0-0.7
10*9/L
Basophils
0.0
0.0-0.2
10*9/L
Granulocytes Immature
0.0
0.0-0.1
10*9/L
General Chemistry
Sodium
140
135-145
mmol/L
Potassium
4.5
3.5-5.0
mmol/L
Creatinine
75
45-90
umol/L
Estimated GFR
76
>=60
Units for eGFR are mL/min/1.73sq.m
Kidney function estimate based on
assumption of a stable serum creatinine
concentration: diet, drugs, pregnancy,
clinical state and muscle mass can affect
accuracy of the estimate. Urinary ACR may
assist interpretation.
See www.bcguidelines.ca/pdf/ckd.pdf
Calcium
2.44
2.10-2.60
mmol/L
Total Bilirubin
4
<17
umol/L
Alkaline Phosphatase
93
35-120
U/L
Gamma GT
18
<31
U/L
Alanine Aminotransferase
20
<36
U/L
Lactate Dehydrogenase
175
<225
U/L
Serum Proteins
Protein Electrophoresis
Total Protein
69
60-80
g/L
Protein Electrophoresis
Albumin
41.3
35.0-50.0
g/L
Alpha 1 Globulin
3.2
2.0-4.0
g/L
Alpha 2 Globulin
7.2
5.0-9.0
g/L
Beta 1 Globulin
4.7
3.0-6.0
g/L
Beta 2 Globulin
3.2
2.0-5.0
g/L
Gamma Globulin
9.2
7.0-14.0
g/L
Pattern
No paraprotein band is seen on routine
electrophoresis at this time.

[Ken_PA]

Tina, your thinking is excellent on every point, including about the unusual location of the first node. Bravo to you.

I did read the link you posted. The more that I read about this, the more I'm personally convinced that it is all very true in your case. There's possibly even a small chance that once the implants are removed, the nodes might shrink somewhat because there's not that constant inflammatory stimulus anymore. Your primary doctor seems to be a very good one. Very, very good.

I'm glad you had a great, informative ultrasound tech that gave the good news right then. Is it possible that you can get the report on the genetic testing directly to yourself - so that you don't have to wait for the appt with the onco to know the results?

[tina7]

I am not sure about the genetic testing and how long it takes.  When I had the genetic test done 10 yrs ago for BRCCA 1 and 2... it took a year to get the results... the government covered the cost becuz both my sister and I had BC within a  month apart. At that time... Canada did not have the same resources that the US had for the genetic testing as they sent my blood down to the states for analyzing. This time the Onco set it up and I believe its being done here and I think although it takes time - it definitely wont be a year as I should receive results at my next appt on Apr 29th...but will look into this matter further also.  Now.. I am not going to lie, I have shed quite a few tears the last few days... I cant believe this is happening to me ... this CLL its bothersome and Im sad and hope Im going to be OK but it still worries me.  They gave me a booklet on CLL from the Canadian Cancer Society and im reading things that are scaring me.  Also... I thought I read in it somewhere that this disease is more common in men than women and although it usually appears after 50 its more common in the 70's.  Im 57 and am female... and the fact that it started next to my breast just seems so uncanny and leads me to believe somehow its linked to these implants and they wont remove them right away now due to government protocol. I had clean nodes when i had my mastecomies so its just so weird.  I am becoming quite disturbed with the medical system here in Canada.  We have the best extended health coverage through our employer... you could not get any better and Im feeling like they are throwing me under the bus.  I am sorry to babble on.. Im just so sad and dissappointed.  And now this CLL is starting to freak me out. The Onco says he has seen people live with it for 30 yrs but now im thinking... if the implants dont come out right away... am I making it worse?

Thank you soooo much for all your wisdom and help. I just dont know anymore where to turn.
Warm regards

Tina

[Ken_PA]

"I had a colonscopy last month..."
Tina, I very much recommend that you refuse any more medical appointments that are not very necessary at this time.

You need to shield yourself and get pampered. Please shield yourself as much as possible from stress, get others to do things for you. This is very important for your physical health.

[tina7]

Hi Ken,

You are so kind and knowledgeable! and boy am I glad i found this forum. I was scheduled to have the implants removed on March 22nd, but the surgeon met with me and mentioned that becuz CLL is not linked to the silicone implants they pushed my surgery date back to 6 months or so down the road (apparently thats government protocol) My dr on the other hand is quite adamant that the implants have had something somewhat to do with the whole ordeal and feels that once they are removed things will improve immensely.... but unfortunately they've pushed my surgery date back and Im at their mercy. The good thing is today I did have an ultrasound of the bladder/kidneys and the technician was kind enough to tell me the bladder looked fine and there was no thickening of the lining per say and kidneys look good other than she mentioned a tiny bit of calcification (stone maybe), and said it was not cancer... so at least that was positive. I am going to try to push to get the implants out of my body sooner than later so will be call ing my dr to contact the surgeon once again.  I will be getting the blood work for the genetic results on Apr 29 when I see onco .. will keep you posted. The surprising thing is though.. there is no way I had CLL for a long time becuz... I had two nodes removed when I had my breasts removed and they were both clean just fatty nodes , which I would think would have showed up then.  So Im thinking this  CLL  came on quite recently. Incidentally I had something similar to intercystis approx 20 yrs ago. Thats very interesting...  Yes you are absolutely rite.. I need to shield myself from stress.. that is very important.  Thank you Ken for being so kind and such a god send.

Ps   Theres been alot on the news lately about breast cancer from implants - Check this out https://www.ctvnews.ca/health/breast-implants-linked-to-cancer-allowed-in-canada-despite-ban-in-40-countries-1.4350090

I feel that although CLL is not the same... the node that started this whole ordeal for me is 2 to 3 inches from my implant (its in a weird spot) Its gotta somehow be connected?

Warm regards

Tina

[Ken_PA]

Tina, did any doc mention "interstitial cystitis"? That would be inflammation of the bladder.

Sorry to say, but the extreme stress that just won't stop might be what's causing causing flareups. Other than that, I don't know - except maybe to recommend trying to be as anti-inflammatory as possible.

Your immune system reacting to the silicone might be a factor. I don't know how long after the removal that would stop being a factor.

I wouldn't guess at all that this is CLL in the bladder... which maybe would result in pronounced and visible red in the urine. I think, though, that inflammation does commonly result in microscopic amounts. Don't hesitate to post again whenever you might feel like it.  I wish you the best, you certainly deserve a break.

[Ken_PA]

..and don't think that you are being a bother :)