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In early Lymphoma can blood test still be normal
I have a very hard, swollen, fixed lymph node under my ear. Its been this way for about 6 months. I finally got enough nerve to go to my PCP. His words we not very encouraging. He said with what he felt best case scenario was a "raging infection somewhere inside my body. Worse case is Lymphoma. The node is not painful and the one in the same spot on the opposite side is also hard and fixed but only fingertip sized, whereas the other is about the size of a quarter. I has a CBC done yesterday and all reading we within normal limits. My RBC was on the lowest side of normal and my WBC is 6.8. That would lead me to think we could rule out infection. I have had a low grade constant fever for approximately 3 months, intense night sweats. Sometimes I have to change clothes in the middle of the night. I am also very fatigued all the time and we have a very busy life so I constantly have something I have to do and it takes everything I have some days just to function. I will be seeing a surgeon in 4 days, but I am very apprehensive and was just wondering if anyone has an opinion or similar experience. I am a 35yr old female and have always been in pretty good health.
COMMUNITY LEADER
That's considerate of you to let me know,thanks.
I wouldn't recommend plunging too deeply at this time into those 2 articles I cited. I myself only read the first few paragraphs, because that tells it all.
I would recommend this well done one on flow cytometry:
http://www.med4you.at/laborbefunde/techniken/durchflusszytometrie/lbef_leukaemievortrag_engl.htm#DFZ_B
Scottish? you probably mean Denis Burkitt. He's back from Africa (Burkitt's Lymphoma), researching high fiber now.
Here is what I think is the key to hyperplasia: when B cells get activated (to attack a real or imagined enemy) they multiply. That's why lymph nodes swell during infection, it's like a military base cloning troops during wartime. The difference is that non-malignant cells don;t invade and destroy surrounding tissue.
I don't believe that ~30% of lymphomas go into spontaneous remission ,sorry.
Also, most patients feel fine for a long time after they first have lymphoma as if nothing is wrong.
Your thinking is very good on the daughter. Your sister might have some exotic pathogen as a carrier that was brought home, but with no symptoms herself. Or it's autoimmunity.
"She does;n;t have that pathologist report describing what her cells look like under the microscope." That's why I'd said "If it exists", I was wondering how they'd get cells that are both clonal and CD10+ out from a blood sample.
Still, even such a microscopic examination might not be definitive: http://www.medscape.com/viewarticle/521365
"Because low-grade lymphoma cells (MALT or follicular lymphoma) morphologically might mimic the benign lymphocytes seen in HT, the diagnosis of lymphoma based on cytologic examination of fine-needle aspirates often is difficult if not impossible" So you'd need a whole node taekn out to examine its architecture - cancer wipes out the nodes internal structure. But then so does non-malignant inflammatory pseudotumor... I mention this all as a way to say that in some cases diagnosis is not easy.
Yes, some doctors are bullheaded and egostistical, Getting then to admit a misdiagnosis would be an uphill battle, probably resulting only in anger.
I wouldn't recommend plunging too deeply at this time into those 2 articles I cited. I myself only read the first few paragraphs, because that tells it all.
I would recommend this well done one on flow cytometry:
http://www.med4you.at/laborbefunde/techniken/durchflusszytometrie/lbef_leukaemievortrag_engl.htm#DFZ_B
Scottish? you probably mean Denis Burkitt. He's back from Africa (Burkitt's Lymphoma), researching high fiber now.
Here is what I think is the key to hyperplasia: when B cells get activated (to attack a real or imagined enemy) they multiply. That's why lymph nodes swell during infection, it's like a military base cloning troops during wartime. The difference is that non-malignant cells don;t invade and destroy surrounding tissue.
I don't believe that ~30% of lymphomas go into spontaneous remission ,sorry.
Also, most patients feel fine for a long time after they first have lymphoma as if nothing is wrong.
Your thinking is very good on the daughter. Your sister might have some exotic pathogen as a carrier that was brought home, but with no symptoms herself. Or it's autoimmunity.
"She does;n;t have that pathologist report describing what her cells look like under the microscope." That's why I'd said "If it exists", I was wondering how they'd get cells that are both clonal and CD10+ out from a blood sample.
Still, even such a microscopic examination might not be definitive: http://www.medscape.com/viewarticle/521365
"Because low-grade lymphoma cells (MALT or follicular lymphoma) morphologically might mimic the benign lymphocytes seen in HT, the diagnosis of lymphoma based on cytologic examination of fine-needle aspirates often is difficult if not impossible" So you'd need a whole node taekn out to examine its architecture - cancer wipes out the nodes internal structure. But then so does non-malignant inflammatory pseudotumor... I mention this all as a way to say that in some cases diagnosis is not easy.
Yes, some doctors are bullheaded and egostistical, Getting then to admit a misdiagnosis would be an uphill battle, probably resulting only in anger.
1 Comments
Pls how can i contact you ken, here is my email ***@****
Hello Ken,
Thank you for that information. I need time to process it, I understand, a little of how sometimes lymphoma can be misdiagnoised and be hyperplasia, and how there can be a colony of B cells without malignancy, I don;t know what this bcl-2 protein is that is expressed on neoplastic follicles but not in reactive follicles. I need to reread it several times and look up a lot of terminology that I don;t know. But I think I have the outlying jist of it, I think. I just need more time to digest it before I can comment or even ask questions. You are amazing in how you find these articles. Thank you so much for sharing.I need a few days to think on this one.
She does;n;t have that pathologist report describing what her cells look like under the microscope. I read all documents that she got as she went through the testing period and she requested copies of everything.
That article seemed to talk more about young people than older people. But as I said it was a hard read through the first time for me. I need to read it again and I will understand more.
I also looked up spontaneous remission project and that is very interesting and inspirational. When she was first diagnosed, I read, and I can't remember where, because I was in a torrent of literature, trying to understand as much as I could, but I do remember reading that thirty percent of people diagnosed with lymphoma have spontaneous remission. The oncologist denied that and called it rubbish.
I remember reading in some book a Scottish oncologist remarking on the side something like...: " And it is puzzling, but there are patients who we can't seem to help, or who decline help, often heal on their own without doing anything and we don;t know why that is."
So I think it does happen. And I hope that is the case here. She also questioned if it could be a misdiagnosis, during that first month. They said no. One day she went to see another Doctor exploring what her options could be, way back when she was first diagnosed. the MD looked at her records and said," I can see you are questioning your diagnosis as to whether it is cancer or not." He was very blunt in his response. He replied, " Don;t question it. You are a very sick women." It took her breath away and mine as without that report we wouldn;t have known she was sick at all. So we haven't questioned it since. We watch and observe, alas my question of why she isn't anemic yet.
I will reread the article, look up more terms, before I ask questions. I just wanted you to know I read the article.
Her daughter works overseas in the Middle East. She has held posts in Pakistan, Irag, yemen, latest in Turkey. She often vacations in Africa, Vet nam and especially Thailand.. But I can't recall how soon her last visit was before the diagnosis. I guess for something like that the visit would have been pretty close. And I don;t think it was. I guess I am just thinking out loud.
Thank you again, for these clues and possibilities to look into. Now, back to my reading!!!!
Thank you for that information. I need time to process it, I understand, a little of how sometimes lymphoma can be misdiagnoised and be hyperplasia, and how there can be a colony of B cells without malignancy, I don;t know what this bcl-2 protein is that is expressed on neoplastic follicles but not in reactive follicles. I need to reread it several times and look up a lot of terminology that I don;t know. But I think I have the outlying jist of it, I think. I just need more time to digest it before I can comment or even ask questions. You are amazing in how you find these articles. Thank you so much for sharing.I need a few days to think on this one.
She does;n;t have that pathologist report describing what her cells look like under the microscope. I read all documents that she got as she went through the testing period and she requested copies of everything.
That article seemed to talk more about young people than older people. But as I said it was a hard read through the first time for me. I need to read it again and I will understand more.
I also looked up spontaneous remission project and that is very interesting and inspirational. When she was first diagnosed, I read, and I can't remember where, because I was in a torrent of literature, trying to understand as much as I could, but I do remember reading that thirty percent of people diagnosed with lymphoma have spontaneous remission. The oncologist denied that and called it rubbish.
I remember reading in some book a Scottish oncologist remarking on the side something like...: " And it is puzzling, but there are patients who we can't seem to help, or who decline help, often heal on their own without doing anything and we don;t know why that is."
So I think it does happen. And I hope that is the case here. She also questioned if it could be a misdiagnosis, during that first month. They said no. One day she went to see another Doctor exploring what her options could be, way back when she was first diagnosed. the MD looked at her records and said," I can see you are questioning your diagnosis as to whether it is cancer or not." He was very blunt in his response. He replied, " Don;t question it. You are a very sick women." It took her breath away and mine as without that report we wouldn;t have known she was sick at all. So we haven't questioned it since. We watch and observe, alas my question of why she isn't anemic yet.
I will reread the article, look up more terms, before I ask questions. I just wanted you to know I read the article.
Her daughter works overseas in the Middle East. She has held posts in Pakistan, Irag, yemen, latest in Turkey. She often vacations in Africa, Vet nam and especially Thailand.. But I can't recall how soon her last visit was before the diagnosis. I guess for something like that the visit would have been pretty close. And I don;t think it was. I guess I am just thinking out loud.
Thank you again, for these clues and possibilities to look into. Now, back to my reading!!!!
COMMUNITY LEADER
Summary: we need next to look at the report I've been talking about (if it exists) about how her cells look under a microscope.
If they look reactive, then everything above applies. But if they look malignant, then we are back to a miracle remission. (I just saw reference to the "spontaneous Remission Project".)
If they look reactive, then everything above applies. But if they look malignant, then we are back to a miracle remission. (I just saw reference to the "spontaneous Remission Project".)
COMMUNITY LEADER
If I were you, I'd want to contact one of the docs in the 1st study I've cited at the University of Washington and tell them that you have another similar case for them to review.
We can talk about how to do that.
We can talk about how to do that.
COMMUNITY LEADER
With your sister at 35% of abnormal clonal cells, that's very high. But that's probably because every one of her many swollen nodes has been cranking out those clonal cells.
As to the spleen, you are probably correct. Which came first, swollen nodes or swollen spleen?
If you are correct, she probably needs to be seen by someone about the injured spleen - NOT a hematologist who thinks it is cancer.
As to the spleen, you are probably correct. Which came first, swollen nodes or swollen spleen?
If you are correct, she probably needs to be seen by someone about the injured spleen - NOT a hematologist who thinks it is cancer.
COMMUNITY LEADER
bobken, at some other time I'll ask you about *why* she was tested for a thyroid condition. That will relate to what actually happened to her.
As for now, I'll begin at the end and refer again to the best evidence that she never had lymphoma: it didn't behave the way lymphoma does. Look at the cytometry report: "Correlation with clinical features, morphologic findings and appropriate follow up are **essential** "
6 months ago, her main clinical feature was having swollen nodes all over. So it was natural that the docs thought the picture was complete for a diagnosis of lymphoma. But when the nodes went down on their own, that changed everything. Everything. The cytometry is never conclusive on its own. It's not a black-and-white test--> "Correlation with clinical features" is "ESSENTIAL".
The key to the report's conclusion that she has lymphoma centers on "monoclonality". The report says--> "Final Diagnosis: Monoclonal B Cell population consistent with malignant lymphoma"
What is monoclonality? One cancer cell develops, then splits into 2 then 4 then 8... finally there are millions. Each is identical to the others. They are all clones of that first cancer cell.
Being clonal is the same thing as monoclonal, they are synonyms. The opposite is "polyclonal" which is the way that normal cells are (not being all the exact same).
So since she has 35% of her lymphocytes being clonal. that proves she has cancer, right? No, even the report says that it is "consistent with malignant lymphoma". It's not 100% proof, it's merely consistent with cancer. It can also be consistent with some other condition.
So now the next step is simply to find cases where people have tests which show clonality, yet they don't actually have lymphoma. Forget everything else and concentrate on the following (remembering that 'reactive' means not-cancer):
"Prominent Clonal B-Cell Populations Identified by Flow Cytometry in Histologically Reactive Lymphoid Proliferations"
http://www.medscape.com/viewarticle/473169
Like your sister, the tests of those six patients show that they have clonality, and docs would think they have lymphoma. But... "Available clinical follow-up ranging from 13 to 56 months revealed no evidence of lymphoma in any of the 6 patients."
Next step: you must find and post her pathologist's report. It will describe how the cells look under the microscope, using terms like nucleus, chromatin, etc. Please ask any questions you have at this point. There's a lot to absorb.
Oh, and let's look at one of the six cases.
http://www.medscape.com/viewarticle/521365
I quote this: "Pathologists should be familiar with this phenomenon to prevent misdiagnosis of follicular lymphoma in patients with HT."
Your sister doesn't have Hashimoto's Thyroiditis, but she has something else which similarly created monoclonality which was misdiagnosed as lymphoma. Note that when the misdiagnosis is made, it comes out as the Follicular type, which is the same as your sister.
As for now, I'll begin at the end and refer again to the best evidence that she never had lymphoma: it didn't behave the way lymphoma does. Look at the cytometry report: "Correlation with clinical features, morphologic findings and appropriate follow up are **essential** "
6 months ago, her main clinical feature was having swollen nodes all over. So it was natural that the docs thought the picture was complete for a diagnosis of lymphoma. But when the nodes went down on their own, that changed everything. Everything. The cytometry is never conclusive on its own. It's not a black-and-white test--> "Correlation with clinical features" is "ESSENTIAL".
The key to the report's conclusion that she has lymphoma centers on "monoclonality". The report says--> "Final Diagnosis: Monoclonal B Cell population consistent with malignant lymphoma"
What is monoclonality? One cancer cell develops, then splits into 2 then 4 then 8... finally there are millions. Each is identical to the others. They are all clones of that first cancer cell.
Being clonal is the same thing as monoclonal, they are synonyms. The opposite is "polyclonal" which is the way that normal cells are (not being all the exact same).
So since she has 35% of her lymphocytes being clonal. that proves she has cancer, right? No, even the report says that it is "consistent with malignant lymphoma". It's not 100% proof, it's merely consistent with cancer. It can also be consistent with some other condition.
So now the next step is simply to find cases where people have tests which show clonality, yet they don't actually have lymphoma. Forget everything else and concentrate on the following (remembering that 'reactive' means not-cancer):
"Prominent Clonal B-Cell Populations Identified by Flow Cytometry in Histologically Reactive Lymphoid Proliferations"
http://www.medscape.com/viewarticle/473169
Like your sister, the tests of those six patients show that they have clonality, and docs would think they have lymphoma. But... "Available clinical follow-up ranging from 13 to 56 months revealed no evidence of lymphoma in any of the 6 patients."
Next step: you must find and post her pathologist's report. It will describe how the cells look under the microscope, using terms like nucleus, chromatin, etc. Please ask any questions you have at this point. There's a lot to absorb.
Oh, and let's look at one of the six cases.
http://www.medscape.com/viewarticle/521365
I quote this: "Pathologists should be familiar with this phenomenon to prevent misdiagnosis of follicular lymphoma in patients with HT."
Your sister doesn't have Hashimoto's Thyroiditis, but she has something else which similarly created monoclonality which was misdiagnosed as lymphoma. Note that when the misdiagnosis is made, it comes out as the Follicular type, which is the same as your sister.
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