Confused with Diagnosis

Hi back from hosp had a long day 10 30- 430 , my first visit with Dr. Routy at the Royal Vic Hosp in Montreal ,my CLL diagnosis was given at the Baker Cancer Cente in Calgary last Oct, 3 biosipies taken today,one from the thyroid one from swollen lymphnodes on right side of neck and a patch on my nose that wont heal and the usual vials of blood ,and he may be changing the diagnosis grrrr im very confused now may not be CLL but monoclonal b cell lymphocytosis which would be good as never needs to be treated but has to be watched as can progress to CLL ,hmmmm he is a world renowned blood expert he is disputing the other so called xperts diagnosis makes you wonder rather streeeesfull have to go back for results and 2 more scans waiting for appt for those .neck and nose is bloody sore lol.

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  • Let's hope for MBL... he has ruled out SLL? Your blood counts (ALC) are normal?

    ~chris

  • Which one is the ALC I can look it up on my last result

  • David, you gave your Absolute Lymphocyte Count (ALC) as 6.06 in a previous post; it's the Lymphocytes result (not the percentage, which is also generally given). Also, as Chris asked earlier, have any of your specialists done a Flow Cytometry test on your blood as that's the definitive test for what kind of leukaemia you may have.

    Chris is right; your specialist needs to rule out SLL, where the ALC can be low - even normal, because the cancerous lymphocytes can be hidden away in internal nodes, the spleen, bone marrow and sometimes elsewhere.

    I hope you get that definitive answer and soon...

    Neil

  • I had that done in Alberta in Banff ,they had to rush the bloodwork to a lab in Calgary.I see Dr. Routy again on Oct 2nd guess I should ask him about SLL.

  • Hi David,

    While it's frustrating not having a clear diagnosis, it does look like your news will be better than first thought. The important thing is that you will be monitored for any signs of progression to CLL and may never need treatment.

    I'm not surprised that you are getting varying diagnoses, as you are borderline MBL/CLL by your ALC count.

    Neil

  • Things have taken a turn as of Friday past, was at ENT Clinic have been seeing a ENT Specialist too, after CT Scan and Ultra sound in neck area, he suggests removal of half of my thyroid as a mass was detected and large lympnode on rt hand side,multiple nodes were detected in the ultra sound exam. This could happen in the nxt month , I see my Hematologist on Oct 2nd. Not too happy about having surgery.

  • Radiotherapy is not an option? I would get second opinion...

    ~chris

  • I will bounce this off my hematologist ,would rather not have more radiation

  • Hi Dsmitch,

    Hang in there. Not knowing is a stressful component for all of us. If you are in the medical hands of competence, it is better to have a thorough diagnosis than a half-ass guess from a Doctor who does not take CLL as a serious cancer. Because CLL is a cancer of the immune system many autoimmune conditions, infections and secondary cancers can develop as a result of having CLL or MBL through immune compromise.

    Few people know that CLL is only one of a collection of Leukemias and Lymphomas numbering near 75 separate identities in each category. CLL by itself is highly heterogeneous or different for each patient. CLL can exist simultaneously with some of these other cancers or be mistakenly identified as CLL when it is really MCL, a much more dangerous and harder to treat cancer.

    The part of your post that may indicate your Doctor's concern is the non healing cutaneous lesion on your nose and the thyroid node both of which could be caused by CLL cell infiltration but could also be another form of cancer needing treatment not appropriate to CLL/MBL.

    Think positive and hope for a good outcome from a Doc trying to accurately know what is going on.

    WWW

  • Yes Thanks its quite a mixed bag of tricks as he said I am in a very gray or grey area with regards to my ALC as is borderline ,so confusion reigns ,yes still positive just threw me for a bit of a loop as far as mindset goes.

  • Hi David,

    As Neil and Chris indicate, even many doctors are unclear on the exact difference between MBL, SLL, and CLL. It's not a perfect distinction, not black & white, but more shades of grey, since all three have exactly the same misbehaving (cancerous) white blood cells that live too long and reproduce too often as clones ( sometimes called monoclonal, B cell clones or CLL cells) .

    Each of us has a different rate of the bad cells reproducing and dying off. If the rate is balanced you have MBL or stable CLL, if most of the bad cells hide in your lymph nodes and spleen you have SLL.

    So the only difference for you- the patient is the rate of increase of ALC and symptoms.

    If you ALC is below 5k and you have no enlarged nodes or spleen most doctors will say MBL. If the ALC increases above 5k but stays low and your nodes or spleen grow, then most will say SLL. When the ALC is well out of normal ranges with or without enlarged nodes or spleen then it's CLL. But in any case the only thing that matters is the rate of increase and B-symptoms. Some of us go decades before the excess B cells cause a problem, others (like me) need treatment a few years after diagnosis.

    From Wikipedia, the free encyclopedia: Monoclonal B-cell lymphocytosis (MBL) is a condition that resembles chronic lymphocytic leukemia (CLL) but does not meet the criteria for CLL, and does not require treatment. However, CLL requiring treatment develops at the rate of 1.1% per year.

    The definition of CLL includes >5000 CLL-phenotype B-cell lymphocytes per cubic millimeter. Patients with <5000 lymphocytes per mm³ and no symptoms of CLL are diagnosed with MBL.

    The term monoclonal means that all the B cells are derived from a single cell.

  • Here is a good discussion on MBL by Dr. Tait Shanafelt from the Mayo... This is a count of monoclonal B lymphocytes by FLOW it has nothing to do with absolute lymphocyte count (ALC) .

    ncbi.nlm.nih.gov/pmc/articl...

    As Len mentioned there is a great deal of overlap... there is now high count and low count MBL, clinical and background population MBL... so it is very much a work in progress, and there is no real way to divide MBL from SLL... yet.

    Also see the HOVON Group from the Netherlands...

    njmonline.nl/getpdf.php?id=...

    ~chris

  • Just wondering is MBL classified as a cancer as I didn't go through with NZ Residency because of the diagnosism had it all ready to go then had the medical done and this happened last July

  • According to the Dutch paper by te-Raa et al. that Chris was nice enough to reference for us (see above), classic MBL is classified as "pre-leukemic" and "not lymphoproliferative" which suggests that it is not yet leukemia, and not yet cancer, but has an increased probability of converting to CLL. I myself don't see the distinction as being very important, since according to my last blood report, I am just above the borderline for ALC of 5000, yet I consider myself as having CLL. I think that all of us that have greater than 5000 monoclonal B-cells per microliter running around our body should be cautious. I think that there is still a lot to learn.

  • There have been proposals of using absolute lymphocyte count (ALC) to divide MBL from CLL, but they haven't been widely used...

    ncbi.nlm.nih.gov/pmc/articl...

    In fact it is a step back to the 1970s

    bloodjournal.org/content/11...

  • Wow. Very nice paper. Thanks. As suspected, the absolute threshold is not terribly important. I think this statement sums it up:

    Molecular characteristics of the leukemic clone are a better predictor of progression than an arbitrary ALC or B lymphocyte count threshold.

    and:

    Consistent with other reports, our analysis suggests that the biologic characteristics of the leukemic clone (e.g., CD38 status) are a better predictor of an individual’s likelihood of progression than an arbitrary ALC or B lymphocyte count threshold. Further studies evaluating how best to draw the boundary between MBL and CLL in patients with borderline lymphocyte count elevations are clearly needed and will add to our clinical and biological understanding of these commonly encountered disorders.

  • Don't confuse me more Chris lol

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