CLL Support Association
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Still not sure

My absolute lymphocytes have been averaging about 5.5 since 2012. My absolute neutrophils have been slightly elevated as well. Wbc anywhere from 12.0 to 15.1. My last labs 7/31/2017 my absolute lymphocytes went up to 8.7 in less then 2 months, & my absolute neutrophils went down to a normal range of 5.4. Wbc 14.7. My % of lymphocytes had a normal count with atypical cells. Everything else was normal. My doctor is having me repeat tests along with flow which has always been normal. Any thoughts would be appreciated.

Thanks

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Hi again Cindyrella,

Given your Flow Cytometry test has always been normal, there is probably another reason for your slightly raised lymphocyte count over the past few years. So you probably don't have leukaemia/lymphoma. It would help if your doctor would tell you from your latest tests which lymphocyte type was elevated. (Flow Cytometry testing provides the definitive test for CLL and some other related blood cancers, by identifying which lymphocyte type is elevated and reporting if a large proportion of that elevated count is due to clones - the cancerous lymphocytes that divide faster than they die.)

You may just have some sub-clinical/low grade infection that is driving your body to produce more white blood cells, hence your elevated neutrophil and lymphocyte counts.

Neil

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hi Neil, called American cancer society and she told me flow cytometry test would not be done unless biopsy showed cells of cancer, can I just ask for it to be done to find out too? don't want to do whole excision of lymph node in neck....

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Flow Cytometry is the definitive test for CLL and other lymphomas. The fact that you have been informed by the American Cancer Society that it will not be done unless cancerous cells are found - and hence need testing to find out what kind of cancerous cells they are, makes sense. If your cells aren't cancerous, there's no need to do extra testing. I guess you could ask for this test, but would expect you would have to pay for it in full, with no insurance coverage...

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yeah, true about insurance....

The lady at American Can Society said that the flow test was for finding out exactly what kind, but seems it is also for diagnosing....? then my doc should order it so I can be tested for it....?

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This test is only done if your pathology test shows you have a lymphoid cancer, to find out which type. IF your lymph node changes and a future biopsy test shows positive pathology, only then does it make sense to find out which type of lymphoma. Your insurance would then cover the Flow Cytometry testing.

Neil

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hi Neil, ok but I am confused.

If fine needle aspiration biopsy showed no pathology in cells, why would it change?

Also, I know it could be misdiagnosed by a needle biopsy missing it but then, why don't they be sure?

I mean the ENT told me I could be in the group where it just stays swollen forever or goes away or the group, some type of cancer.

why doesn't he want to find out now?

why cannot they find out now? I am confused. Why not take out lymph gland now, why did he not want to? and I don't want to either, if not necessary.

One person said the flow cytometry test would show me if I have leukemia or lymphoma in numbers there....? would it?

then, I want to get it now.

Just been so ill for 10 years and worse last four years, in bed 75% of time, would like to get some treatment for whatever I have and find out what it is.

Or like you told me, fibromyalgia is used after all other things are ruled out.... Then need to do tests...

I am not feeling well and confused

thank you very much

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Further to the excellent information provided in the various answers to you and Cindyrella in this post, in particular by Bubnjay1 and SeymourB, I get how relieved you would be to have a definitive diagnosis explaining your symptoms. Unfortunately as they said, having a CLL diagnosis isn't going to improve your situation, because it is not treated until absolutely necessary, i.e. bone marrow infiltration causing reduced levels of other blood cells approaching life threatening levels during treatment, sufficiently swollen nodes interfering with organs, or really debilitating fatigue, which I suspect would not be caused by just one swollen node.

You mentioned having pain all over your body and thankfully with CLL, pain is generally not a symptom and when present, it is localised - caused by swollen lymph nodes. With lymphomas, there are also classical symptoms which you haven't mentioned, such as drenching night sweats (so soaking you need to change your bed clothes and even the bedding), unexplained weight loss and fevers. Other common symptoms are frequent and longer lasting infections, anaemia/breathlessness and unexplained bruising.

As was mentioned elsewhere, there is a precursor condition to CLL (in the blood) called Monoclonal B-Cell Lymphocytosis, which is quite common in older people: cllsupport.org.uk/cll-sll/s... There is also a form (called SLL), where it doesn't appear in the blood, but only in the lymph nodes and bone marrow. As I and others have said, a Flow Cytometry test is the definitive test to determine if you have a lymophoma/leukaemia and which type it is. I don't think you need to see a haematologist to order this test; you can probably ask your doctor to request it, but it will have to be done on the biopsy of your swollen node, in case the presumed CLL cells haven't spread to the blood.

Because no pathology was found in your node biopsy, it wasn't deemed of concern - hence the advice to come back if it changes. My swollen node wasn't even biopsied and it was only a few years after it was ignored that I was diagnosed with stage IV CLL/SLL.

In addition to monitoring your node for any changes, you should keep an eye out for any consistent changes in your blood tests (and keep a copy of them) - the CBC test is sufficient. In addition to increasing lymphocyte counts, you may see the comment 'smudge cells present'. Other indications of leukaemia/lymphoma are falling red blood cell or haemoglobin counts and/or falling platelet or less often falling neutrophil counts.

Neil

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thank you again so much Neil. You are so helpful. I will do all you suggested here.

I really appreciate info and I am going to get that test from my doc. and check cbc numbers now I know.

thank you

So glad to see you on the ptsd site too, you are so helpful, thank you....

may pop in again, see you on ptsd site too

many blessings

xxx

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Thank you Neil

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Hi Cindy

I wonder why you had a blood test, have you experienced any feelings of being unwell or is a blood test a normal medical check for you ?

In all honestly unless you feel unwell I would carry on with living my life and forget about CLL until my next blood test. I think here in the UK our doctors often do not tell patients that they have elevated white cell counts at the level of yours saving us a few years of worry. Most including me were annoyed not to have been alerted earlier, but it did save me 3 years of anxiety. ALC of 5.5 to 8.7 in 4 years would seem to indicate slow progression and you may be one who never needs treatment, if CLL is confirmed.

However you have come to the right community, if information is what you seek. Lots of knowledge and experience, more than you need at this stage.

Best advice is look up a haematologist who specialises in CLL to whom you can be referred, once diagnosed, and read the pinned posts written by PaulaS with lots of advice on what we can do to help ourselves.

I wish you well and whilst I understand how you feel, I hope you find it reassuring that nearly everyone here would be so pleased to swap their results with yours.

If you make your posts private to the community you may have more replies, otherwise everyone on the internet has access to your post, and many are reluctant to reply.

Take care of yourself and let us know how you get on.

Bubnjay1

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Thank you for your response. I do have regular blood tests due to diabetes. I guess the concern to me is the atypical cells found in the lymphocytes & the jump from 5.5 to 8.7 in less than 3months. I will be doing the flow cytometry next week as well as repeat of a full cbc.

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which test do you do to find out if you have cll or sll etc? flow cytometry like Neil said, I should do too?

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Yes, the flow cytometry test should give you a definitive answer. Best of luck

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can I tell doc I am concerned about it and want to order this test? it is just a blood test right? I am in US, do they give hard time about it if you want to test for it?

thank you

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peacefullandcalm -

I agree with Bubnjay1

CLL is not usually the type of cancer where early detection leads to less suffering or better results in treatment. If you are suddenly feeling more poorly, then push for testing. Otherwise, take your time.

The thing to consider is what you will do if the test is positive for leukemia? Also consider what will you do if the test is negative. Sometimes it's choice between the devil you know, and the one that might be lurking. Some people find one or the other preferable.

Are you prone to worry? If so, you might seek counselling if you don't already have a psychiatrist, psychologist or social worker to discuss it with. I say this especially if the test is positive. I find the worry to be a big part of a my symptoms.

In the U.S. you can always ask for any test or treatment you want. Whether the doctor will order it, and whether the insurance company will cover it is another matter. I think flow cytometry is a cheap enough test that they may not push back. They may want to just wait a few more months and re-do the CBCs.

To get an idea of cost, I found this blog useful for recent prices in the U.S.:

todddunn.wordpress.com/2016...

The flow cytometry will confirm leukemia, but additional, more expensive testing is needed to determine which mutation(s) and prognosis.

Much depends on what kind of doctor, what specific tests, and whether the tests are done at a hospital, or sent out to nationwide labs (often much cheaper).

I also find the whole insurance and medical industry hassle to be debilitating. I really think I need treatment for Medical Payment Traumatic Syndrome.

You may already be aware that medical care costs in the U.S. are not at all driven by market competition, because they are not advertised in advance, and you often cannot reliably shop by phone. Whatever they tell you verbally is not the final word.

Here's how blogger Todd's year ended:

todddunn.wordpress.com/2016...

He's doing monthly CBCs - which I think is quite excessive in early stage. I do mine every 6 months with my hematologist visit. I think they may be milking him. But he did say he was neutropenic in another post.

Oh, and also note that you can sometimes negotiate prices after receiving the first bill - especially if you offer to pay your entire after-insurance share immediately. Always worth a try.

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I am tired, will have to come back, thank you very much for response...can I ask my primary doc for referral to hemotologist and that doc can order flow cytometry test?

thank you

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You should be able to. Do you have elevated WBC?

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hi Cindyrella, are you still not sure if you have cll/sll or not? why do you suspect it if I can ask? or your doc?

The flow cytometry test will tell me if I have that or not? or just what type of it it is?

I am so confused and exhausted.

I want to test for it due to a few different things. Don't really want to take out whole swollen gland under jaw, but find out for sure. Not just needle biopsy which could miss it? with extreme fatigue, pain last ten years, in bed 75% of time.

why are you testing for this yourself is I can ask?

thank you for allowing me to be in on your post....

back to bed...

thank you so much

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@cindyrella50

Anyone mention Monoclonal B Lymphocytosis (MBL) to you?

cllsupport.org.uk/cll-sll/s...

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No they have not. Im having more tests 8/14. Thank you! Ill check the link you sent.

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Im not sure yet if I have either yet. My doctor referred me to an oncologist in 2015 after 3 years of continued elevated WBC's & more importantly absolute lymphocytes. Also they showed atypical cells. Most recently they went up from 5.5 to 8.7 which is significant since it had been less than 90 days. My doctor is having me repeat a full CBC, Blood smear & the flow cytometry. If they come back high then I will have a bone marrow test. Good luck to you! I sure hope you can find out what's going on with you. i understand the frustration.

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