I had a colonoscopy 9/29 and the original biopsy report identified hyper plastic lymphoid follicles, but no cancer. I just received an updated report that identified "atypical lymphoid aggregates consistent with involvement by previously diagnosed low grade B-cell lymphoma."
Needless to say, I was blindsided by this, as I wasn't even aware that there was a question related to the original report. Is this a bad prognostic indicator? I was diagnosed in July after CT identified lymphadenopathy and mild splenomegaly when admitted for acute sigmoidal diverticulitis (first and only episode). I am on W&W, asymptomatic, with most recent WBC 36 with ALC 29.
I have only had a video meeting with the oncologist in July and her communication with me is very poor. I am scheduled for PET/CT on Saturday and she wants to repeat flow cytometry to provide a more definitive diagnosis of either atypical CLL (CD5, CD10 negative) vs different low grade lymphoma. The polyp biopsies were CD5 negative and were negative for cyclin -D1 (I think that rules out Mantle cell lymphoma), "CD 23 has patchy positivity, CD3 highlights background T cells".
I am feeling very discouraged right now and angry at the poor communication from her office.
Anyone with this type of experience? Any advice? I am considering a consultation with Ian Flynn in Nashville, TN. I need to find a CLL provider that communicates better.
Thank you
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peacethruthestorm
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Reports like this are frequently updated. First a preliminary result, and then a final result. Sometimes, even the final results change. Sometimes two pathologist can examine the tissue sample, and come up with two different opinions. Medicine is not always perfect. As far as being dissatisfied with your MD, probably would be good to let him or her know you need better communication. A second opinion or switching specialist might be the way to go. It sounds like you are still going through testing. You definitely need an expert specialist with good communication. The second path results might not be necessarily bad. Try to take care of yourself until this is all resolved.
Try to hang in there. BTW, I had a small intestinal biopsy before starting treatment. There was not a clear pathology identified, but eventually turned out to be CLL.
I had a similar strange pathology report from a colonoscopy in 2010, the original pathologist in Oakland CA, suggested MALT Lymphoma. But when Dr. Furman submitted a slice from the original preserved biopsy block to his very experienced pathology team, they identified it as CLL.
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These papers ( some written in Med-speak) may either help or confuse the issue:
SNIP Immunohistochemistry can be used to help distinguish MALT lymphoma from other small B-cell NHLs. B-cell-associated antigens such as CD19, CD20, CD22, and CD79a are usually expressed. In contrast to small lymphocytic lymphoma and MCL, staining for CD5 is usually negative, and these lymphomas can be further distinguished with CD23 (positive in small lymphocytic lymphoma) and CyclinD1 (positive in MCL).
I wasn't able to tell from your post whether you're currently seeing a CLL specialist or not. If you're not, that would be a compelling reason to switch doctors.
The fact that the doc wants to repeat the flow cytometry test suggests that she's trying to confirm your CLL diagnosis. Did you ever get the FISH and mutation status tests?
I have had a video visit with an oncologist that I would not classify as a CLL specialist. Her communication has been very poor and connecting with her office very inefficient and frustrating. I am set to see Dr. Flinn 10/26 and his office has been receptive and very responsive. I am relieved already. I haven't had FISH or mutation tests to date. I am CD38 negative and in my research, I've seen studies that report some correlation that CD38 positive correlates with unmutated status. Not sure this is true or not. I imagine Dr. Flinn will order these tests. Thank you for your response.
You are correct about the correlation between CD38 and IGHV mutation status. While they are independent indicators of time to first treatment, you have around a 60% likelihood of being IGHV mutated if you are CD38 negative.
Very good call arranging to see Dr Flinn, a recognised and respected CLL specialist. Not long to wait thankfully .
Yes! I'm very thankful! Thank you for confirming the information about CD38. What a roller coaster of emotions this has been. Getting Dr. Flinn's opinion and clarifying my diagnosis will help settle a few of the" what ifs" that keep running through my mind.....no matter what is determined.
Peacethruthestorm, I also reside in Tennessee, Rutherford County, I see Dr Jia Bi at St Thomas West. She is highly recommended by LLS. Am also in a trial that is run by Ian Flinn. I have also heard great things about the Sarah Cannon Cancer Center.
Please seek out a second opinion. I had to release my first Onc after he looked me straight in the eye and didn't reveal the truth. He was a very snarky man and his sidebar comments were disconcerting.
FWIW, CLL cells occasionally infiltrate other tissues. The extent of clinical significance is best discussed with a specialist. My understanding is that unless it is a CNS or other involvement affecting urgent life functions, it can generally be treated without major sequelae. And it' true that even final pathology reports can change.
It's tough to be calm, but if no one is urging immediate hospitalization, I am sure it's not immediately life threatening. I am sure Dr. Flynn will order appropriate diagnostic tests to get a better handle on this. And please also do the CLL Society second opinion, although if you don't have FISH or flow cytometry or other test results, maybe wait until you have them.
Might be time to research a clinic like Mayo, or some similar org that can provide you a more thorough examination & diagnosis. Have you had a bone marrow biopsy? I've been with CLL for > 10 years. My WBC is around 25 & RBC is 4.01, and platelets are @ 85. I'm in the good ol "wait & see" group, but am in no particular hurry to start anything until I know it will resolve my situation. Don't get discouraged, but DO go get a 2nd opinion from a really well certified group of oncologists. Research is your best weapon!! Best of luck!!
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