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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.
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1081992 tn?1389903637
COMMUNITY LEADER
Hey, bobken, thanks very much for the update. I'm gad for your good news.

Platelets can vary without any pathology involved. Or with inflammation.

"So I am thinking if the Absolute lymph count is almost normal that has got to mean the cancer cells are dying."  I don't think she ever had leukemia.

Some spleen lesions are benign. Or else whatever is there is causing her lymphocytes to go high.

She must be very happy she didn't start chemo. Worse yet, the improvement she would have undergone anyway would probably been credited to the useless chemo.

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Avatar universal
HiKen,

I don't know if you are still reading this but I thought I would update.  She appears to b about the same. Spleen still enalrged, no signs of any other enlarged nodes. Her Absolute Lymphocyte count has been steadily trending downward since winter. It is now 5.0  and reference range is 3.5. So its just about normal.   WBC steadily went down and now is 7.5 quite normal. Her platelets jump around from 113 to 156. They could be going down and then suddenly the jump up 30 or 3 points in a monh. Her percentage lymphocyte is still high 68 but down from a high of 77 this winter. percentage neutripils still low but steady. So I am thinking if the Absolute lymph count is almost normal that has got to mean the cancer cells are dying. At least her spleen isn't any bigger although we have not had an ultra sound since march. But the lump is still there.  But all across the board, her blood work is better than it was this tim elast year and that has got to be a good sign

Bobken
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Avatar universal
When I see the kappa light chains, and the mention of B cell Monoclonal  my mind jumps to a Myeloma related disorder.

This might be because I am a myeloma survivor (or living with Myeloma, however you want to think of if). So my tests are always looking for these things.  Swollen spleen is not that uncommon with this, my doctor checks mine sometimes.

Has your sister done any tests to check for abnormal protein in blood?

In this case a bone marrow biopsy seems like it would be an important test. Or the classic myeloma screening test is a blood test , SPEP.  
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1081992 tn?1389903637
COMMUNITY LEADER
I'd have to mull that spleen thing. I don;t know much about trauma there, except that it can be fatal. I'd assume that an inflamed spleen would be much more susceptible to damage by trauma that might not have been excessive otherwise.

Suppertime for me.
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1081992 tn?1389903637
COMMUNITY LEADER
Spontaneous remission:
http://lissarankin.com/hiv-baby-cured-medical-breakthrough-miracle-or-proof-of-self-healing#more-1584

An MD, she has a long presentation on PBS (and youtube videos) that you might catch. I don't really like a lot of her approach, but it was worth watching for me regardless. Videos are great when a person is burned out from reading too much :)

My summary: *some* (not all) people who are unhappy and perpetually stressed can develop diseases, then get better when they change their life circumstances. Rankin had that as her own experience. I'd say it does not apply to or work with everyone. But it might with some.
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Avatar universal
she went in because of the large swelling on her left abdomen, which she was told was very very enlarged spleen, Until the doctor pointed out the swollen nodes in her neck, arm pits an groin, she had not noticed them. So we don't know what came first.
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1081992 tn?1389903637
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.
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Pls how can i contact you ken, here is my email ***@****
Avatar universal
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!!!!
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1081992 tn?1389903637
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".)
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1081992 tn?1389903637
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.
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1081992 tn?1389903637
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.
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1081992 tn?1389903637
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.

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Avatar universal
Hello Ken,

She was tested in 2011 for thyroid and had good numbers. Her daughter has hashio moto disease which is a thyroid condition, autoimmune condition, but my sister doesn't appear to have that. MY sister is very healthy, and very active physically or was until her enlarge spleen. Always had gastrointestional issues even when we were kids, but nothing that the doctors were ever concerned over or that interfered with her daily life. Her Vitamin D level is 63.
Her B!2 is in a good range. She is quite thin but with strong muscles. She was the last person in the world anyone would think would get any type of cancer. But it is a strange world. I hope that as you suggested perhaps she might be in a miracle remission. I have been reading on the internet for other diseases that could mimic Lymphoma and the only thing I came across was Lyme disease, as sometimes one can get a enlarge spleen. But the thing is she had the energy level of a teenager. She would run up the steps two at a time. She did heavy gardening, played tennis. Even now she gets on the trend mill a few times a week and power walks a mile in 12 minutes and she doesn't break a sweat. The only thing that bothers her is when she tries to wash the floor as the bending aggravates her spleen somewhat. It would be wonderful if it wasn;t lymphoma. And if she could just shrink that spleen she could have her old active life style back. She tried to tell the doctors that when she was hanging out with some teen age boys who were showing off their new Karate moves, one accidently, as she was standing in the wrong place and he was turning at the wrong place plut a side kick right under her rib cage and up at her spleen. She screamed, we thought her ribs were broken but she said that he missed the rib and went under it as he kicked up. We iced it for a couple of hours and she was sore. About two months later she waked up with this huge sweling on her left abdomen. The doctors say there is no correlation between the enlarge spleen and the Karate side kick, but we often question it ourselves.

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Avatar universal
LYMPHOID POPULATION; AN ABNORMAL LYMPHOID POPULATION (35%
OF LYMPHOCYTES) IS PRESENT CHARACTERIZED AS CD5 - , CD10+ ,
CD19 ++,  CD20++ , CD23 -  AND LIGHT CHAIN RESTRICTED FOR KAPPA OF MODERATE INTENSITY. THE T- CELL POPULATION IS WITHOUT ABNORMALITY.
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1081992 tn?1389903637
COMMUNITY LEADER
Has your sister ever had thyroid problems? Or any type of autoimmune condition?
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1081992 tn?1389903637
COMMUNITY LEADER
Well, in arguing for my position that she never had lymphoma, the cytometry report could be seen as "it looks like a duck but isn't *necessarily* a duck".

Before I go further  can you zero in on this phrase:

"Lymphoid population: abnormal. (35% of Lymphocytes) 15 present characteristics as cd5, cd10+, cd19++, cd20 ++, cd23-. And light chain restricted for Kappa of moderate Intensity."

and post it exactly as in the report, with no typos.



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Avatar universal
Hi Ken,

Took a while to find it. I could;t upload ,so I copied the best I could.
I appreciate you explaining the terminology on the scan report.. that helped  a lot.  Belowe is what was on the flow cytometry report and the name on the report is correct

Antigen Panel Lymphoma/ lpd, mds/ panel. ( 5 color, cd45/slide scatter gating) cd2, cd3,cd4,cd5,cd7,cd8, cd10,cd11b,cd16,cd19,cd20,cd22,cd23,cd34,cd38,cd48,cd52,cd56,cd57,cd64, FMC-7 and light chain( lambda and kappa).  Antigen Density, as interpreted from fluorescence Intensity, is expressed as negative ( -, not different from isotype control). Dimly positive( +, greater than control but with significant overlap). Moderately positive(++, distance from or slightly overlapping control)  and brightly positive (+++ 1.0 -2.0 logs brighter than control. Cell viability is 99% by 7-aad stainin.

Final Diagnosis:  Monoclonal B Cell population consistent with malignant lymphoma

Lymphoid population: abnormal. (35% of Lymphocytes) 15 present characteristics as cd5, cd10+, cd19++, cd20 ++, cd23-. And light chain restricted for Kappa of moderate Intensity. The T cell population is without abnormality.

Myeloid Population: orderly maturation with normal expression of cd10, cd11b, cd16, cd64, and cd45


Monocyte population – not relatively increased with normal antigenic expression of cd4,cd11b,cd38,cd64 and cd45

Blast population is not increased nor antigenically abnormal for specimen type.

Clinical/Diagnotic Significance:
The phenotype study is indicative of B cell lymphoproliferative disorder. The co-expression cd10 is suggestive of follicle center cell origin( ie:  follicular lymphoma)
Correlation with clinical features, morphologic findings and appropriate follow up are essential

Medical indication-  malignant lymphoma.
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1081992 tn?1389903637
COMMUNITY LEADER
There is hopefully also some document you can find that describes what cell structure is seen by microscope, the "morphology" in a pathology report.
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1081992 tn?1389903637
COMMUNITY LEADER
bobken, you've got to promise to get ahold of that flow cytometry report and post it, okay? :)

Maybe I'm being too optimistic but this story has the potential to end up in such a good way.

Really, the first thing I'd want to check if I were you would be whether it actually has the correct patient's name on it. Then look for words such as "possibly" or "likely". She might have been so wise to have refused the chemo.
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1081992 tn?1389903637
COMMUNITY LEADER
Well now, the scan report show pretty much what I was looking for...

Nothing in what you quoted from the report actually shows a node of 3cm. So that's good. Very good. You see, once a node surpasses the maximum that it can be from enlargement due to infection, etc, then it is most likely due to cancer. But hers haven't surpassed that threshold.

The conglomerate (21 by 41 cm ) refers to a bunch of them together, near the heart.

"No single noe reaches critical dimension within the neck to im[licate pathologic adenopathy' so that's very good again. No nodes in the neck are necessarily cancerous .

The enlargement of her supraclavicular nodes are especially worrisome, because the mostly common cause is metastatic cancer, spread from somewhere in the thorax. But, supraclavicular nodes can also become enlarged from "reacting" to non-cancer causes, just like any other nodes. Besides, 8.3mm isn't super large anyway.

The final paragraph says that the report concludes it is "likely" lymphoma. But guess what? I think it never was lymphoma...  Now, that conclusion depends a lot on what the flow cytometry report says. If that report also uses words such as "likely" then the idea that she never had lymphoma is reinforced.

Tomorrow, I might look up misdiagnosis of lymphoma to see how common that is. I think in your sister's case it looked like a duck and quacked like a duck, but maybe it wasn't really a duck. Maybe she had some infection or immune reaction which made nodes become "reactive" and enlarge all over, as a reaction to the infection. Everything hinges now on the cytometry report. I'll be sure to keep an eye out tomorrow to see if you have it.

Her spleen might take a while to go down. Since her lymphocytes are still high, that tends to say that she still has whatever infection or immune provocation caused all this to begin with.

Since it all started a mere six months ago, even that also seems less like cancer and more like infection, or autoimmunity, or something similar.

Keep in mind that, while anything is possible, cancer almost never just goes away on its own.


(Btw, I hope she negotiated down all the costs of tests, etc.)




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Avatar universal
most of them were 1 to 3 cm

conglomerate left periaortic retroperitoneal adenopathy measuring 21 by 41 cm

numerous mildly prominent lymph nodes in both anterior and posterior trianglr regions . the largest nodesare partially covered by the sternocleidomatoid muscles and may be difficult to palpate , No single noe reaches critical dimension within the neck to im[licate pathologic adenopathy, but there are supraclavicular lymp nodes on both sides which may be clinically palpable. the larhest  on the left lying between the common carotid artery and the left subclavian artery at the level of the lower pole of the thyroid, measuring 8.3cm in short axis dimension . on the same slice there is also a 6.3 mmright supraclavicular lymp node

Given the extensive disease elsewhere in the body this is likely lymphoma but no single lymp nodeis elarged greater than 10mm in short axis dimension

sorry for the typos
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Avatar universal
she is in her late fifties
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Avatar universal
The flow cytometery test was a $1700 blood test, from a regular blood draw. She did not have a marrow apiration either, just the physical exam, the regular blood draws, the ultra sound and the cat scan.

I will see if I can get a copy of the flow cytometery report but from what I can recall all it said was something like it had cells that could be follicular cells or something like that. I will ask her if she has the the report.

LDH range is 81-215 for the lab they used.

We are in the USA .

Her spleen is still enlarged though, and her lympocytes are still high even though they are coming down.
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1081992 tn?1389903637
COMMUNITY LEADER
Very important question: what was the size of her largest nodes?
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