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help on a pathology report for Lymphoma

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.
32 Responses
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1081992 tn?1389903637
COMMUNITY LEADER
Always glad to be of help, Tina. No one knows absolutely the answers to your questions, as they relate to any individual rather than group averages. But the news will everyday talk about people who say they know the answers absolutely.

There's been a lot of fear mongering, too, that caused a lot of needless anxiety in a lot of people; don't let that get to you.

I'm confident that your upcoming scan will be good, there's no reason to think otherwise. You know, you were kind of a trailblazer in the knowledge that implants can cause widespread immune reactions. That was when lots of doctors and doctors' groups said it wasn't true, but your experience proved it was true --- and you did great after the removal. Just as you'll most probably do great after this virus.
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Hi Ken,
How are you? I am once again reaching out to you. I am so sorry to bother you again... you have always been a wealth of knowledge for me and I am now grappling with something that is bothering me... I wonder if you could shed some light. As you know I have body ct scans with contrast now once a year for the CLL.  I dont know if I ever shared with you in my posts in the past.. but I have also had some heart issues and had an Atrial Flutter procedure and an SVT (Supraventricular tachycardia) these two procedures were done in May of 2019.  I still have some ongoing heart issues... so this past week I had a heart ultrasound....due to severe shortness of breath.... today I received a call from the family doctors office saying I need to have an ultrasound of my liver.. because in the heart ultrasound report they found an 8.7 cm cyst on the liver.  I am so upset... because I asked the receptionist to send me copies of the CT scan in July 2021 and the cyst showed up as 8.4 cm and also to send me the CT scan report that was done in 2020 and the cyst was 8 cm on that one.  So you see it has been growing... I don't understand two things.... one - did the doctor and oncologist both miss the liver cysts in the last two CT' scans? or did they not think it was a concern?  I am so worried. I now have to wait until monday to talk to the doctor to find out when the liver ultrasound is.  The other thing I think is weird is the fact that  a CT scan with contrast would rule out any potential malignancies? is that correct? If so.. is this something they dont think is a worry. I now have to sit and go mind crazy all weekend.  I am sorry again for bothering you.. but just wanted your true genuine thoughts and opinion.  As always... thank you. God bless you. Kindest

Tina
1081992 tn?1389903637
COMMUNITY LEADER
Hi again, Tina. Your highly reactive immune system could mean you defeated Covid more quickly and easily than the average person. Being highly reactive means you had the bad effects from the implants when the average person didn't, but it also can mean that you defeat infections better than average people.

"is it still building protection to so that my symptoms are milder?"
Yes. I'd say that the vaccine probably gave your immune system a jump start in fighting the virus.

"I am wondering if I have surpassed the worse of it being day 5..."
That could very well be true. It does seem to be true, as you say, from how the cough got better. But you have to live through it some more to know for sure, and just be aware of changes in symptoms without being too worried. You have good reason to be optimistic, Tina, just like way back when you had the upcoming CT and the results then turned out to be very good for you.

"My cough has subsided alot, but that could be because of the antibiotics..."
It's long been known that zithromax is also an anti-inflammatory. Anti-inflammatory is what you want, so your highly reactive immune system doesn't get carried away.

"I do however have shortness of breath today, but I am thinking that could be anxiety"
Probably true. If you are okay breathing when walking up steps, then you probably don't have any fluid in your lungs.

I'll also throw this in, at the risk of complicating things too much: just as you maybe didn't ever really have CLL, it might be true that your positive test for Covid was a "false positive".

I don't think you are "immuno compromised", I think the opposite: you are highly immuno reactive. You are not typical, as always, and the nurses won't understand that :)  

I'd want to be most aware of how the lungs are doing.

Write again any time, I'm always glad to be of help. And please let me know when you are feeling tip top :)
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Hello again Ken.. and THANK YOU again so much for your help and wisdom! I always feel better after I receive your notes! You are definitely a wealth of knowledge. My breathing seems to be ok... my headaches... although they have diminished every now and then I feel either slightly dizzy or off, but not like when the headaches came on on April 1st and 2nd.  The cough is so minimal now.. but still there. Lungs are ok.. every now and then I get a tiny twing feeling in the left lung or heart.. but its really really I am still in shock I got this... but happy I did have the first vaccine... even though it was only on March 21st. I guess my worry is...1) will traces of this virus stay in my body? apparently I can test positive again, even if I am negative. 2)  Once you have had this virus can we get it twice?
Im tired and nervous also because my onco skipped one body ct scan since the last one was favorable and good.. but now I have to have one in either June or July for my next 6 months follow up.  

thank you again.. kindest regards

Tina
1081992 tn?1389903637
COMMUNITY LEADER
Yes, Tina, great news for you once again. You can happily relax even more now.

However, always remember that your system reacts in ways that are unusual. Specifically, I mean your *immune* system; and the immune system can do a large variety of mysterious things. Always stress that with any doc that you see for any reason. Your cancer scare was because of your unusual immune system reacting to the silicone implants. My guess is that your heart symptoms are probably also from your immune system. It's best for us to start by wondering if everything has the one cause.


"I am thinking if it was my esophagus it would have showed up on CT..."
Nope, and not necessarily show up even with using an endoscope that looks at the esophagus from inside. E.g., there is a condition called eosinophilic esophagitis (say that fast three times). That gets detected only by an endoscope that also has an attachment to take biopsy samples. Everything can look normal with a scope or with a CT or MRI or ultrasound scan, but only a biopsy would find immune cells called eosinophils. (But if the esophagus is really really bad after years, the damage can be seen visually.)

The biopsy involves taking tiny snips, or else dragging a sort of brush across the surface. Then the pathologist uses a microscope to look for eosinophils.

There shouldn't be eosinophils there, but if they are there then they might be reacting to something you eat or drink. You can keep a food diary, and correlate that with any symptoms esp nausea. Or you can try various 'elimination diets'. I'd ask for the biopsy, and try the other approaches while you wait. There are some meds for that, which relate to immune suppression.


"I am hoping to get through the heart issues as I never feel the best anymore."
Immune system chemicals can make a person feel bad. E.g., when a person has the flu, all the symptoms are from immune chemicals, not from the actual virus. You can say that you are feeling 'malaise', right?


"I have had throbbing in my upper neck to upper chest bone (above breast area)"
Do you mean that it is to one side, or that it is along the vertical centerline? This is the most important question for the moment.


"Nexium"
I'd ask the doc if it's ok to stop that. It isn't helping, but suppressing stomach acid constantly can have bad effects over time.


"trazodone"
Many many people with mystery immune conditions are told that "it's all in your head" and wrongly given antidepressants or tranquilizers.


"I am not sure if I can direct these questions to a specific forum"
Yes, to this forum right here :)


Thanks for the update, Tina!
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1 Comments
Hello Ken,

How are things! I have some updates and am hoping once again with your expertise you could guide me or give me any insight. You have been such a god send to me and I am so grateful for that.... Here is the latest... sorry to bombard you....

I had my first vaccine (Moderna) on March 21st. I was diligent in every possible way... I continued to wear my mask and even doubled it at times, and always sanitized.  On April 1st at 10:00 pm, I developed a cough and headache, but never had a fever or loss of taste or smell. I had the doctor prescribe zithromax an antibiotic for bronchitis and started taking it immediately as I thought I had bronchitis.   I went for a covid test on April 3rd and found out today that I am positive.  I have been crying and am so worried.  especially with all my underlying health issues and have so many questions that I asked the health nurses...
1) I was told that the vaccine was only effective 14 days after the vaccine..... does this mean it did nothing for me as it is in my system.... and if it is working.... is it still building protection to so that my symptoms are milder?  I am on day 5 of symptoms.... I am wondering if I have surpassed the worse of it being day 5 or can it get worse. Usually with anything the first few days are the worse... so I am hoping now the oncoming days will start to be calmer and better.(Vaccine was given to me on March 21st .. symptoms came on April 1st and diagnosed positive on April 5th.   My cough has subsided alot, but that could be because of the antibiotics, I do however have shortness of breath today, but I am thinking that could be anxiety due to the news that I received positive at 4:00 am.   Apparently they told me that my quarantine time from day 1 of symptoms would be a 20 day period due to being immuno compromised (CLL)  I'm a mess and I am sorry for all the rambling on.  
Please help any knowledge is greatly appreciated.  Thank you again Ken!   Kindest Regards.
1081992 tn?1389903637
COMMUNITY LEADER
"would that be an indication that all the nodes in the body would be normal or small in size?"
It sure seems like they should all be behaving the same, yes. If you could have an ultrasound to see the fatty hilum on what was the biggest one, that should settle your nerves immediately. Maybe even your primary doc could do that in their office. (But a CT shouldn't be able to see the hilum unless contrast is used.)

"everything he has seen with my case has been very different"
Yep, and that turns out to be good :)
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2 Comments
Thank you again Ken. It puts my mind at ease. Thats a great suggestion for ultrasound... but... we have to make appointments for ultrasounds as a result it might take a while to get one so I may probably just wait for the CT, which will be with contrast.  I am hoping for good results.  You have given me hope and for that I thank you profusely.  I will definitely keep you posted and may bother you with more questions if I think of any.
Kindest regards and god bless!
Hello again Ken, Hope you are well and keeping safe.  I wanted to update you with the results of my ct scan in July.  I had a virtual  appointment with my oncologist a few days ago.  Apparently all the nodes are pretty much down to normal with the exception of one slightly enlarged one under my left arm pit, which he claims is not anything that I should worry about. I recall when I had my mastecomies back 10 yrs ago.. they removed two enlarged (fatty) nodes and they were cancer free.  Which he believes confirms that the CLL did not exist when I had my breast cancer surgeries.  He is baffled in the way that the CLL is behaving and believes that there is a probability that it could have been brought on by the silicone implants as they have caused associated-Anaplastic Large Cell Lymphoma (BIA-ALCL) and at the end of the day.. he feels that CLL, is somewhat in the same "family". He has now changed my CT scans to yearly as opposed to every 6 months since the last 2 CT scans were good and favorable.  The CT of my head was also good.  I am hoping to get through the heart issues as I never feel the best anymore.. and for a long time I have had throbbing in my upper neck to  upper chest bone (above breast area) and seem to feel nausea alot with these symptoms. My family GP cannot seem to diagnose what this is.. other than he feels its acid reflux and prescribed me with Nexium 40 mg (twice a day - long term) and trazodone 100 mg  once a day to relax things.  I feel so sick all the time and am starting to lose faith in that because its been going on for several years.. I am thinking if it was my esophagus it would have showed up on CT... and I have had an ablation for atrial flutter last may and a procedure for SVT (Supraventricular Tachycardia ). The cardiologist says everything is fine. They cant seem to find out what it is... I am so sorry to ramble on.. I'm just so grateful to you for listening and all your expertise and help.  I am thrilled about the CT Scan results... now I just want to feel good once again.  I am not sure if I can direct these questions to a specific forum, because I dont think its heart related... dont know who to turn to now. Any advice you have is greatly appreciated.

Thank you again so much! I hope you are keeping safe and are well given these crazy time with COVID.  THANK YOU again so much! I cant tell you how grateful I am for your help.

Kindest

Tina
1081992 tn?1389903637
COMMUNITY LEADER
Tina, I would look at the upcoming CT as a way of hearing that "hooray, everything looks good!"
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Also.. forgot to mention... I did give the info to the onco re castlemans and he did not say much other than ... everything he has seen with my case has been very different.

Kindest
1081992 tn?1389903637
COMMUNITY LEADER
"would it be the lymphocytes that would be elevated?"
Yes, they would in CLL.

"any signs showing up in my blood test results indicating  there is CLL?"
No, and even your "globulins" are normal, whereas they can be *low* for CLL, and probably also for SLL.

"have you ever heard of the CLL almost completely disappearing 8 months after the removal of the implants"
No, but it seems very curious. It's a medical mystery. It seems enough for an oncologist to perhaps possibly re-evaluate everything that happened before.

The implants were apparently stimulating the immune system to react. Is removing that stimulation enough to make a cancer regress? I don't know, but I think that would happen very rarely, if ever; but otherwise maybe it means there never was actual CLL/SLL, just something that looked like it.

Did you ever talk to any doc about Castleman's mimicking CLL/SLL? I seem to remember that your primary doc was my favorite.
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Hi again,  You are really a godsend. I am so thankful for all the info you provided.  I am so stressed these days... I don't think I've ever mentioned but I also have a heart condition that was  also diagnosed last year " Atrial Flutter" and so while I was enduring all the stuff with the new diagnosis of CLL and removal of the implants.. I also had a cardiac heart ablation, which at the time they also found SVT (Supraventricular tachycardia ), which they also apparently took care of. However, after having the procedures several months later, I started having the symptoms again, thus the ablation did not work for me.  

Just wanted to mention and ask....when I had the CLL diagnosis last year.. I had a lymphnode on my neck that was somewhat swollen.  As of today.. I cannot even feel that its there... would that be an indication that all the nodes in the body would be normal or small in size?

I can't thank you enough.. You have brought my anxiety level down!  I will definitely let you know when I receive the CT scan and the results... it might not be till Sept as that is when I see my oncologist for results.

Kindest regards
Tina
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