In early Lymphoma can blood test still be normal

[Terry8100]

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.

[looby194]

Hi Terry, sorry to hear about your recent troubles- I can relate as I'm in pretty much the same situation at present, it's not nice! Blood tests can show up normal with lymphoma, sorry that's not reassuring but there are a lot of other reasons you could be having these symptoms too- lymphoma is the big one and it dominated my thoughts for a long time. Chronic Fatigue Syndrome could be one of the nastier things that could be to blame but it also could be something like Coeliac Disease , I would ask to have that ruled out if it hasn't been already. Biopsy is the only way to diagnose lymphoma as far as I know so be prepared to be persistent, blood tests and CT scans are not definitive methods of diagnosis but some doctors seem happy enough with them. Good luck, it's not easy- I'm signed off at the minute through fatigue and it's horrendous struggling to function like this. I hope you get a good result!

[Mochadelicious]

Hi Terry8100,
I was just curious if you've heard the results of your biopsy yet?  Loony is correct about having normal blood tests and Lymphoma.  This happened to me and it was a biopsy that confirmed Lymphoma.  Your symptoms are concerning, however I would think blood tests would show something abnormal since you are experiencing symptoms.  

I know the waiting is hard, but I hope you get some good news soon.

[Terry8100]

I went to the surgeon on Tuesday,  they tired to see it in an ultrasound but couldn't see what they needed to see. I go tomorrow for a ct scan @ 12. I will go back to the surgeon tomorrow also at 3:50 for the results of the scan. Then depending on what they see, then onto a biopsy. The doc said he really didn't want to go cutting into that area of my neck unless absolutely necessary.

[Ken_PA]

Hi, one thing that tends against cancer is that you have the bumps at the same place, symmetrically on both sides. Lymphoma probably wouldn't behave like that.

Very hard (as a rock) nodes generally have to be investigated to see if they are from metastasis - when cancer cells break off of some other (non-lymphoma) cancer and wind up settling in a node where they multiply... but that also would generally be on one side only. Plus, any original (primary) cancer would very possibly have been noticed by now.

Sometimes an infection occurs right inside of nodes, and the battle that occurs can result in scarring. Much more rarely, but possible, is that the inflammation is fierce enough and long enough to result in calcification. So that's something to hope for as you go to your visits today. Good luck.

[Mochadelicious]

A CAT scan can see if something looks suspicious, but it can't tell you definitively if it's lymphoma or what kind of lymphoma it is.  It also can't tell you the grade (how aggressive it's behaving).  As mentioned before, a biopsy is the only way to know these things, and I'm sure they will do it if the scan comes back abnormal.  Because there are many sub types of lymphoma that require different kinds of treatment, it is imperative that they know exactly what kind of Lymphoma it is.

I do wish you the best and hope you let us know what you find out.

[Terry8100]

Hi All
I had the Ct scan today. Here is the findings. Palpable abnormality corresponds to bilateral borderline lymph nodes in region of jugulodigastrics. The left side measures .8×1.0 cm. For lymph nodes in this region, this is not technically enlarged as these can be up to 1.3 cm. There are occipital lymph nodes seen that measure 8mm.
Impression:
Bilateral symmetric 1cm lymph node does not appear necrotic or suppurative  
Naso-and oropharynx are unremarkable
Thyroid gland is normal
surgeon tells me since its it's not "technically" enlarged that we're not going to worry about it and to follow up with primary in a month.  I kinda feel like im at the curb and the bus left me. I didn't really get a satisfying answer. I guess since its grown to the size it has in 6 months thay I need to let it grt 3mm larger before they will do more testing?  I still dont have an answer ttothe cause of my other symptoms as I do not have any infection...  kinda frustrating. I know I should take this as everything is okay but I still have a  sinking feeling about this.

So with this the surgeon tells me that it is not "technically enlarged" so we're not going to do anything about it and follow up with my primary in a month.  So since its grown over the past 6 months, I guess I have to wait for it

[Terry8100]

Sorry about the crazy wording on my post. My computer is down and I'm using my tablet so I dont get to see what's there till I post

[Ken_PA]

You can ask for a needle biopsy, they are known for false negatives but you might get lucky and they'll spot some unusual cells of one kind or another.

[summerluvr]

I've got one of those (suspicious but not technically enlarged as they are only 1.1 cm, and 1.5 cm is the size that warrants more investigation)  I found out from the investigation of the lymph node i have autoimmune thyroid disease so maybe that caused it? I am not sure.

There is also the possibility the node is "scared" from frequent infections (I experience those as I am immune compromised)

So... I'm sort of left to monitor the really big/hard node by my ear for any changes at which time they will do more investigation.

In my case I'm already living with one incureable blood cancer, so maybe it is easier to accept this weird in between stage?  

I know it is hard not to worry you have cancer. But many blood cancers can 'smolder' so even though you have cancer you don't need treatment for a long time if and when it progresses to that point.

[Terry8100]

Decided on a 2nd opinion. I went to my ENT and he is concerned with the way it feels. As of yet I still have not had a biopsy. The new dr I went to believes they were looking at the wrong lymph nodes. It is defiantly swollen and hasn't went down.  This node has been this way for about 8 mnts now. The night sweats subsided as well as the random fevers but have since returned. I have a new issue now, I itch so bad and taking Benadryl and using anti itch cream, I don't get much relief. I have scabs from itching so hard I break the skin. Back around the thanksgiving holiday I was vacuuming when I had a crushing chest pain hit unlike any other. It lasted close to 30 minutes and was so bad I had to sit down and it hurt to move.  About an hour and half later it was completly gone. Since then I have had chest pains but not anywhere as severe as that. These pains are on the left side. No funny arm feeling but they are very scary. I said something about it to the ENT...  I go back for a follow up to the biopsy I was supposed to have 13 days ago. That dr decided he did not want to do it until he talked to my ENT.  I   Feel like I keep running into a brick wall. It's so frustrating. When I go tomorrow I'm done waiting and seeing what these drs think. I am to the point I will be insistant.   All the while this node has not been painful  yesterday when I would yawn or swallow it hurt. Not like inside sore throat, but it was very sore yesterday.  Not as bad today    

[Ken_PA]

Didn't anybody test you to see if you'd had a heart attack? There is a blood test for 'cardiac enzymes', plus you should have had an EKG at the minimum.

[bobken]

Do you know why some lymphomas have a high white blood count while others have a low white blood count? Is it because of the type of lymphoma such as follicular, or if it  T cell or B cell lymphoma?

[Ken_PA]

Hi, you might be thinking of the "leukemic phase" that some people go through. Mantle Cell and Follicular are probably the types of NHL that most often show a leukemic phase.

As for low WBC? People whose lymphoma has invaded the bone marrow will see a decline in white cell numbers as the bad cells crowd out the good precursor cells that would normally be producing blood cells of all types: white, red and platelets.

[bobken]

Thank you for answering. Do all people with lymphoma get anemic?  My sister has an enlarged spleen. Ultra sound six months ago showed 22.5  cm ,latest ultra sound shows spleen to be 18.5. Folliuclar lymphoma was diagnosis six months ago based on a flow cytometrey  blood test. The lymphoma was based on the enlarged spleen ,and nodes in neck, groin and armpits, and the Cat scan showed a "heavy burden of enlarged lymph nodes."
Lymphocytes were a high of 77 but have been slowly trending downward to 70.
LDH was 214 6 months ago and now is 163
All cancer blood tests came out normal. We cannot feel any nodes in her neck, or arm pits. The groin, six months ago, they felt like small marbles, now we can only feel them very slightly on one side.
The hematologist wanted her on chemo immediately.   She opted for a wait and see. The hematologist told her with the size of her spleen she would be anemic within 2 to 3 months and would be so fatigued that she wouldn't have any choice but to start chemo. She appears fine six months later and is not anemic at all. She is very careful of her spleen, All blood is normal except for the high lymphocytes and the low
nuetraphils. Is this how lymphoma normally progresses sometimes. She did not have a biosy as the hematologist said since she was paying out of pocket, it was really just a waste of money. It was already clear she had follicular lymphoma.

[Ken_PA]

What you say is very unusual and very interesting.

No, it is not at all the way that lymphoma usually progresses. In fact, I would wonder if she ever actually had lymphoma except for one thing: you say that she did have flow cytometry done. So I ask you: since she didn't have a biopsy, on what cells was the flow cytometry done? On cells from a blood draw? Or did she perhaps have a bone marrow aspiration?

Another question for you: What is the normal reference range for LDH on the tests that she took? I ask because different labs have different normal ranges.

All of her symptoms could have resulted from causes other than lymphoma. But not the results of the flow cytometry, as far as I know.

What country are you in?

I will await your replies. Something unusual is going on, I have to mull it over. Either she had a miracle of a spontaneous remission, or the flow cytometry test was done wrong somehow.

[Ken_PA]

- can you get a copy of the flow cytometry report?

- how old is your sister?

[Ken_PA]

Very important question: what was the size of her largest nodes?

[bobken]

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.

[bobken]

she is in her late fifties

[bobken]

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

[Ken_PA]

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.)

[Ken_PA]

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.

[Ken_PA]

There is hopefully also some document you can find that describes what cell structure is seen by microscope, the "morphology" in a pathology report.

[bobken]

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.