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.
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!
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.
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.
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.
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.
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.
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
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.
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
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.
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.
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.
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.
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
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.)
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.
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.
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
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.
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.
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"
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.
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.
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!!!!
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:
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.
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.
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.
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.
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.
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
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