Hello i did have the cyclometery test done, but i didnt put it here before. Is thaat the same as a FISH test? Here are my results:
An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction and expression of CD23 and CD200. It is negative for CD10 and CD103. The overall immunophenotype is compatible with chronic lymphocytic leukemia/small lymphocytic lymphoma, although not entirely specific. The number of these cells based on the concurrent CBC is 1.9 k/uL, less than the 5.0 k/uL generally required for a diagnosis of chronic lymphocytic leukemia.
This is why my dr asked me to wait to see if it worsens or to do PET scan and bone marrow for diagnossis. Does yhis maake sense? Thanks to all!!!!!!
Updated:
first off thank you ALL for your tremdous encouragement, support and advice!!! My words of saying my numbers were low should have been explained in more detail. My dr said that my numbers do not quite meet the criteria for a definitive diagnosis of CLL but he thinks that I have it. These are my abnormal blood/urine results:
WBC 12.2
Lymphocytes, 5.5 K/uL
lymphocytes 45 percent
IgG, urine, electrophoresis <0.6 mg/dL
IgA, urine, electrophoresis <0.5 mg/dL
IgM, urine, electrophoresis <0.7 mg/dL
Protein, urine, qn <4.0 mg/dL
All other numbers are within normal range. He did not encourage the PET scan and BMB, he does not think that i need it per say but he gave me a choice to chose to do those for a definitive diagnosis, for my peace of mind. He is an oncologist/hematoglogist and he does not explain things to me in a way i can understand and i do not feel heard when speaking to him at times. Thank you for the suggestions and i will definitely look into CLL specialists.
hello, i hope you are all well. I was recently diagnosed with Probable CLL by Oncologist/Hemotologist. Because my numbers are low, he cannot diagnose me to definite CLL. He said he wouldnt know until my numbers went up. He is giving me the option for a full body PET scan and bone marrmarrow biopsy to get a definite CLL diagnosis. I am most likely going to move forward with those 2 tests.
Can anyone tell me their opinion? I appreciate your time!!
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People here will try to help you with advice as well as moral support.
A bone marrow biopsy is not necessary for a diagnosis of CLL, nor is a PET scan. flow cytometry and immunophenotyping of peripheral blood is sufficient.
If you provide more data about your blood parameters maybe it will help to navigate better.
A PET scan is used if the doctor is looking for something specific under certain indications.
Take advantage of the experience of the many members here and be confident you will get good answers.
Thanks for providing some of your blood counts. A lymphocyte count of 5.5 is kind of borderline. That's because some CLL guidelines call for a monoclonal B cell population of over 5.0 and some just require the B lymphocyte population to be over 5.0. If your lymphocyte count is lower than 5.0, in the absence of other CLL/SLL symptoms you have Monoclonal B cell Lymphocytosis (MBL). If you have a swollen node biopsy and a flow cytomery check which is positive for CLL/SLL, then you have the SLL expression of this blood cancer. This is why I said in my first reply
"The only proviso to the above approach is if your lymphocyte count is in the normal range and it is thought that you might have Small Lymphocytic Lymphoma, the variant of CLL when the CLL/SLL cells are hard to find in the blood, as they prefer to congregate in nodes."
I was diagnosed with CLL/SLL via an immunophenotype flow cytometry test when I had a lower lymphocyte count than yours. There were still enough cells identified with the typical CLL CD pattern for a diagnosis. I progressed to the CLL presentation within a couple of years. That doesn't necessarily happen, but otherwise you face the same immunity and other challenges as those with the CLL presentation.
thank you! These are from the cyclometry test. Is that the same as a FISH test?
An abnormal CD5-positive B cell population accounts for approximately 35% of lymphocytes and 13% of total events. This population shows kappa restriction and expression of CD23 and CD200. It is negative for CD10 and CD103. The overall immunophenotype is compatible with chronic lymphocytic leukemia/small lymphocytic lymphoma, although not entirely specific. The number of these cells based on the concurrent CBC is 1.9 k/uL, less than the 5.0 k/uL generally required for a diagnosis of chronic lymphocytic leukemia.
No the FISH (Fluorescent In Situ Hybridization) test reports whether you have any of a select set of deletions/additions in your CLL DBA; 13q del (good), Normal (can't find anything commonly wrong, also fairly good), Trisomy 12 (Extra strand of DNA), 11q del and 17p del (hard to treat with the old 'chemo' drugs, but not that much of a problem with today's targeted therapies).
Are you seen by a CLL specialist? If not, you can gain access to one via the CLL Society’s online access program. It’s an awesome free program for folks in the US.
I agree with Yalokin that a patient can be diagnosed with CLL without a BMB and a Pet Scan. At least I was. That being said, getting both of those tests upfront by a CLL specialist is common to establish a baseline and to rule out other possible diseases. My initial BMB indicated that my bone marrow was 92% by CLL cells which explained why my hemoglobin was falling rapidly. This fact couldn’t be determined without a BMB for example.
Perhaps you misheard why your doctor was ordering these tests? Maybe he is suspicious of other diseases? Again, it’s not uncommon for these tests to be done upfront. The key is are you being seen at a research hospital by a CLL Specialist? You can read about my experience and see that I was initially seen at a research hospital but my a general oncologist which was a mistake. Essentially, I was in the wrong department being seen by the wrong doctor at an amazing hospital!
Please don’t be afraid to ask questions respectfully of your healthcare provider.
First. You don't need either to diagnosis CLL, just a FLOW. Have you had that test yet? Its just a blood test. If SLL is supected, then a bone marrow biopsy or lymph node biospy would be done. SLL is the same disease as CLL but found in the lymph nodes not blood. PET scans and CT scans are not a normal way to determine if you have CLL. So my next question is, like the others, do you have a CLL expert? If not, I would seek out a second opinion and the CLL Society's webpage is a very good resource to use. Usually CLL is a slow moving disease so you have time to seek out a second opinion from a doctor that deals with CLL daily. Consider using the CLL Society's Expert Access Program. You can get your second opinion through them and its free to you. Also, if you live in CA there are many good CLL experts in that state.
I agree with the replies of the others. CT scans, rather than PET scans are better at detecting any enlarged nodes. If your numbers are low, why is there a hurry to confirm your diagnosis? I would only consider a BMB if you had concerning symptoms and only after a flow cytometry test was inconclusive. The only proviso to the above approach is if your lymphocyte count is in the normal range and it is thought that you might have Small Lymphocytic Lymphoma, the variant of CLL when the CLL/SLL cells are hard to find in the blood, as they prefer to congregate in nodes. Even then SLL can be in just a few nodes before spreading into the bone marrow.
So, I was pregnant with my second child and through routine pregnancy blood tests, it was discovered that my Hb was very low. Long story short, I was given iron infusions. These were actually futile as my iron stores were fine. It was Hb I couldn’t produce. Following the birth of my son, I continued to have blood tests to monitor my Hb. It was in September (my son was born in March) that the GP referred me to the 2 week wait (in the UK, this is where cancer is suspected and you get fast tracked through the system). My referral to the 2 week wait was prompted by, heavy night sweats, low Hb and dramatic weight loss.
I then went through the nerve wracking process of many appointments with haematology. I will never forget the doctor that told me she thinks I have CLL. She also then told me, I can expect to live for 10-12 years. Imagine that, I have a son under 1 and a daughter who at the time was approaching her 4th birthday.
What followed was a BMB, ultrasound on spleen, PET scan and of course more bloods.
Spleen fine, PET unremarkable. Bloods rubbish, BMB, my marrow was crowded out with CLL hence low Hb.
I have a wonderful consultant, one of the very best. I have great support through my CNS and also great support through Guys Cancer Centre.
Go ahead with the tests, the BMB is unpleasant but not painful. The PET scan was scary due to the unknown but actually was fine. Apart from the fact that when I had the PET scan, there were labels on the scanner saying ‘don’t look at the laser’. I couldn’t see what they meant I was not to look at, so I opted to keep my eyes closed 😂
Hello Sun California. I too was recently diagnosed and my hem/oncologist sent me for a pet/cat scan as well. I was not too happy to take the test because it is not needed to diagnosis CLL. But I complied - the test came back totally normal and I was relieved. I was advised on this forum to seek a CLL specialist and I am seeing one next week. I hope you get insight here on this forum on what to do. It seems in the USA they really push the pet/ cat scan unnecessarily. Peace to you as you make your decision on what to do. Adalente
I have had 3 CAT scans and 1 PET scan and not in a trial. I suspect that my doctor was very curious as to why my CLL was so aggressive. Wanted to establish a base line scan to compare with later on. I recall my WBC raising 52k in one month and ALC doubling every 2.5 months. My last CT scan was to check for abdominal lymph node size and possible enlargement of spleen or liver. Neither spleen nor liver was enlarged. Had massive bulky lymph nodes which explained my distended stomach and weight loss. The PET scan was because of suspected Ricther's Transformation. PET was to rule that out or in by checking for any cancer spread from enlarged lymph nodes. Turned out that PET scan did not show any additional cancer spread. PET scans are used for a lot of things, that is just one of them, but not used to diagnose CLL.
A PET/CT isn't intended for CLL diagnosis. And you don't *have* to have a Bone Marrow Biopsy(BMB). If they don't actually know 100% that this is CLL (which as others have noted, can be done by blood tests even if "numbers are low") I imagine it's possible the PET/CT is being asked to *rule out a different cancer*, not to verify a CLL diagnosis. I happened to be a person who went to the doc because I was actively ill, with symptoms, and they did those tests to determine *what* I had. It was initially thought I had an acute leukemia going on, and the FISH/FLOW verified it was CLL. Albeit an aggressive, active variant. For some of these cancers, having a BMB is helpful in monitoring as well as establishig a baseline, but you don't *need* it for diagnosis.
Ask your docs why they want the tests. Since CLL is the most commonly diagnosed *leukemia*, it's a "presumptive CLL" unless further testing shows something else. I know older medical references say "get a CT & PET" but newer data indicates this may not be needed.
Great replies, I too don't see need for BMB or PET scan, neither of these tests are going to benefit slowing, or stopping CLL. There are better diagnosis tools. In any case best choice is to track blood test results to determine advancement rate and whether to treat or not to treat. I am not a doctor, so this is only my opinion. My CLL specialist told me BMB not necessary to detect most CLL and used only in cases where Flow and other tests are not conclusive. Blessings.
My CLL stage 4 was only confirmed after BMB. Ct and Pet scan were required to confirm the extend. My marrow was 98% CLL cells and i have internal lymph nodes everywhere some as big as a fist. I had no symptoms prior and was picked up on my annual routine bloods with Hb of 80 and platlets of43
Going to comment, because so far, most of the other comments seem to have missed a key element of your story.
Yes, CLL can be diagnosed with a blood test. But your counts are too low to get a definitive diagnosis.
This was the vase for my fiancé. His counts were clowe to zero across the board when he was admitted to hospital. We later found out that this was because he had CLL as well as Primary CNS lymphoma. He was very unwell.
BMB is not fun at all. He's had two this year because his counts still haven't recovered, even though he's finished with chemo. First BMB showed that his bone marrow was packed full of CLL cells. They couldn't even get any fluid out.
2nd one showed that there was no CLL present. They were both necessary because of how low his counts and how quickly he needed to be treated. Had we walked away from the biopsy, he probably would've been in a really bad way within a week.
If you think that you have time to see whether your counts will respond to something else, or if your doctor thinks he can start treatment without the biopsy, then skip it.
But my fiancé eventual had a bone and brain biopsy. So if you can aftord them, I would say do them so you know for sure what is going on with your body.
The BMB is done with local anesthetic. It takes a while and there is pain. Its painful for a daday or two after and soar for a week. Can't actually say how limiting the recovery is because my finacé can't walk due to his brain cancer. But he was fine after a day or two on painkillers and the information found was helpful.
Our doctors haven't prescribed any invasive procedures unnecessarily. I don't think your is either. What is making you question the tests?
first off thank you ALL for your tremdous encouragement, support and advice!!! My words of saying my numbers were low should have been explained in more detail. My dr said that my numbers do not quite meet the criteria for a definitive diagnosis of CLL but he thinks that I have it. These are my abnormal blood/urine results:
WBC 12.2
Lymphocytes, 5.5 K/uL
lymphocytes 45 percent
IgG, urine, electrophoresis <0.6 mg/dL
IgA, urine, electrophoresis <0.5 mg/dL
IgM, urine, electrophoresis <0.7 mg/dL
Protein, urine, qn <4.0 mg/dL
All other numbers are within normal range. He did not encourage the PET scan and BMB, he does not think that i need it per say but he gave me a choice to chose to do those for a definitive diagnosis, for my peace of mind. He is an oncologist/hematoglogist and he does not explain things to me in a way i can understand and i do not feel heard when speaking to him. Thank you for the suggestions and i will definitely look into CLL specialists.
It doesn’t sound like a great relationship and your doctor’s expertise isn’t likely sufficient to have a firm understanding of the considerable complexities of CLL. I was in your position 5-years ago and I didn’t trust my instincts. I commend you for finding this forum and quickly educating yourself.
Finally, you are a perfect candidate to take advantage of the CLL Society’s online service. Over the last several years I have heard many wonderful comments about the program. It’s free, done from the comfort of your home and you will be matched with a CLL expert. Give it some thought.
What you stated above was exactly how I read your first comment. An ALC below 5K is not technically CLL which is what my CLLO Specialist professor explained to me after my first treatment, although we both knew I still had CLL, he was giving me comfort as he knew I had very aggressive CLL. I never made it past stage 0-1 before I had to have treatment. I had Great CLL Specialist, he even called me personally day after first appointment to see if I had any additional questions that I might have come with overnight, now that is what I call service. Blessings.
I’m in the US and was referred to a hematologist after my WBC was high for a period of time. I was diagnosed with CLL by a FISH test only. When my counts were getting too high after about 6 years of W&W he referred me to a specialist and before I was treated they did BMB and CAT scan as a baseline. I would just ask for a FISH test and then go from there.
Sorry, JulieS and cll2013 , but doing a FISH test requires the knowledge of the blood cancer, or in your case, suspected blood cancer. That's because there are dozens of FISH test probes. Specific probe set selections are used to check for the different common deletions unique to each blood cancer. The immunophenotype flow cytometry test is the definitive test for CLL. Per the iWCLL Guidelines, section 1, the order for diagnosis is the blood smear (CLL cells are small), the immunophenotype and in some cases the genetic features of the circulating lymphoid cells (the FISH test, with a suitable probe set).
I've lost track of the number of CT scans I've had during trials, but never had a PET scan. I had a lymph node biopsy (because they thought I had lymphoma) and FISH test which determined it was CLL. I only had BMBs during one clinical trial. Absolutely not necessary. Get to a specialist. You probably have years before you have to do anything and even if you I have a super aggressive form of CLL like I do, they won't do anything until you have other symptoms and a a WBC that is way higher which won't happen overnight.
I would definitely not do the BMB. I never had one. It's pointless at this stage. Before treatment is the time to do it. What you need is a flow cytometry test.
I am still confused, as to why your doc thinks a PET/BMB would give you a CLL diagnosis if he thinks there aren't enough cells in your blood. A FISH/FLOW would be more likely to pinpoint a problem. And don't let them run just a "CLL only" panel that only looks for markers specific to CLL. I had expanded panels done when I first was ill, they didn't know exactly *what* I had. The expanded one looks for things other than CLL, it looked for any & all abnormalities.
Mayo Clinic uses this "selective scoring" method in low lymphocyte count patients:
In fact, it is recommended that a FLOW be done first. And if I recall correctly, blood and bone marrow correlate mmmm 95%? so I don't know why a BMB would be done before FLOW/FISH. Perhaps it's an insurance thing.
Note the section above says "blood, bone marrow, body fluids, and tissues may be used." I am not finding information where one is preferable to another.
The Cambridge University Press publication "Multiparameter Flow Cytometry in the Diagnosis of Hematologic Malignancies" states small amounts white blood cells/leukopenia can successfully be done using peripheral blood (PB)
My understanding is, if your lymphocytes are elevated over 5,000 you should have a high enough number of cells to run FISH/FLOW. However, US insurance may not pay for FISH/FLOW until you have had 3 consecutive months of lymphocytes over 5,000. I paid out of pocket to get mine run sooner, if I remember correctly it was under $500. This was a decade ago.I paid for a lot of tests instead of waiting 3 months, but I had severe symptoms. If your symptoms are mild, perhaps just wait a few months until insurance will pay. Our cancer is rarely urgently life threatening, and IMO if you were anywhere near something urgent, you would have symptoms & be checking them out because you felt and/or looked really ill. Extreme fatigue to where you can't walk, massive bruising, cuts that won't stop oozing, blood in stool, bleeding gums or mouth blood blisters, other things that would have you calling the doc.
Reference sentence indicating leukopenic peripheral blood can be used in flow cytometry
I hope you haven’t gotten those tests yet. Whoever suggested to get a specialist is absolutely right. The first test that is definitive in terms of which mutation you have that caused the leukemia because that will help determine treatment is the FISH test. That is a blood test. You don’t need the pain or radiation of the Pet scan and BMB. The next step is probably to do blood work in a couple of months to see if it changes. Also you want to make sure you don’t have an infection. The treatment most of the time in the beginning is watch and wait meaning keep checking blood work every three months and no treatment. I had no treatment for 8 years. Good luck and get a new doctor. He shouldn’t be asking you what you want. Unless there is something else you didn’t say, you can’t trust this journey with a doctor that doesn’t listen to you
I’m glad you had the flow test done. They will know what your mutation is and whether it is aggressive. Good luck. I have a pet scan next week and it is hard for me to not worry until there is something to worry about, but I am going to try to not worry
I can't encourage you enough to push Kaiser for a FISH test and if confirming, to allow you to see a specialist. Even a cash-pay visit is not a bad thing. I had Kaiser insurance during diagnosis and watch and wait then switched insurance to be treated at OHSU by a specialist (Dr. Danilov now with City of Hope in Duarte, if you are close then RUN to him!) I was misdiagnosed for 9 months while working with my primary, once assigned to a hematologist, they ordered quarterly CT scans on me which turns out were exorbitant but did order a FISH test which confirmed the CLL/SLL without a BMB. 9 years in and still have not had one, now in uMRD (remission). The CLL Society offers a free consultation with an expert as well, this non-profit's founder is a MD and a CLL patient. The California chapter is AMAZING, the information is non-stop. Do not stop learning, pushing and advocating for yourself! Best to you!
BMB = Bone Marrow Biopsy, which I guess you worked out.
Thanks for including your Flow Cytometry test results in your post, which concluded "The number of these cells based on the concurrent CBC is 1.9 k/uL, less than the 5.0 k/uL generally required for a diagnosis of chronic lymphocytic leukemia." Since that test was done, your Absolute Lymphocyte Count has climbed to 5.5 K/uL, so you are probably heading towards a CLL diagnosis other than one for Monoclonal B cell Lymphocytosis (MBL) or Small Lymphocytic Lymphoma, where you have a monoclonal B cell population with CLL characteristics, but you don't have a high lymphocyte count.
Normally the next step is to do another blood test, the FISH test, which provides information on which if any, specific genetic markers in your CLL DNA that could be driving your CLL and hence can provide an indication of your time in watch and wait. Bone Marrow Biopsies are generally only done by a CLL specialist when they can't work out why something out of the ordinary has been observed.
Yet the flow test concludes "The number of these cells based on the concurrent CBC... ".
I wouldn't get hung up on these differences. You get variations between blood samples taken concurrently. Also, you have the confusion between, in order of increase, a monoclonal population of B cells, which, per your flow cytometry test, are considered(?) to be CLL/SLL blood cancer cells, then we have the total B cell population, then total lymphocytes, then total WBC. Slightly confusing this, different test machines were used for the CBC and flow cytometry test.
Let's recap.
You posted a week ago, which was your first post, asking about your uncertain diagnosis. You didn't know what you don't know and you have a less than communicative specialist.
There are around 200 blood cancers, with different blood cells involved. Among the lymphomas there are different B, T, NK leukaemias/lymphomas. Leukaemias appear in the blood, lymphomas are accumulations of lymphocytes in the tissues. CLL/SLL sits on the fence; SLL mostly accumulates in the lymph nodes, spleen, bone marrow and sometimes in other organs. CLL/SLL is on of the many Non-Hodgkin's Lymphomas - it's the most common adult leukaemia/lymphoma. Median age at diagnosis is around 70. While you can get itin your 20s, that's rare. There are a number of close cousins to CLL/SLL. Usually, the immunophenotype flow cytometry test is definitive, but sometimes it can be harder to be certain. So occasionally you get an uncertain result. You specialist was trying to involve you in how to resolve this. I would think that in the USA, a second option is usually the easiest to arrange. You could just arrange for your a sample of your blood to be sent to a centre of CLL management excellence, but given the acknowledged wisdom of establishing a relationship with a CLL specialist early on (this can potentially add years to your life expectancy), I would consider it best to do that or arrange for a free video consultation with a CLL specialist via the CLL Society's Expert Access initiative: cllsociety.org/programs-and...
The CLL Society can also help you find a local doctor recognised for their CLL.
Geting back to your question, CLL/SLL originates from monoclonal B cell lymphoma MBL). Only a couple of percent of these go on to progress to CLL/SLL per year, which is a good thing, because it becomes increasingly common with age. Many older people have it, but it's largely benign, though immunity is reduced.
SLL, like MBL doesn't appear much in the blood. Usually it's diagnosed by an immunophenotype flow cytometry test done on a biopsied node, but sometimes, like mine, enough is found in the blood for a diagnosis. Reassuringly, these are chronic illneses, so it can be years before treatment is needed, if it ever is!
So now we come to your original question, Bone Marrow biopsy or PET scan. I'd recommend leaving that question - if it ever needs to be answered, to after your second opinion appointment outcome . CT scans are preferable to PET scans for examining node sizes, but avoiding one avoids the radiation. Bone Marrow Biopsies are only needed when an answer to what is happening can't be determined otherwise.
Mreanwhile, you've found a supportive and knowledgeable group to help you if you have any further questions. If your diagnosis ends up not being CLL, should you need treatment, we are likely to have treatment drugs in common and you may find other topics, such as how to understand blood tests helpful.
I even talked a Kaiser doctor into doing a Notch 1 test.
I think it all might have more to do with who your doctor is within Kaiser.
I understand people’s misgivings. I just paid out of pocket to get a consult at Dana Farber with Dr. Jennifer Brown since I have some complications. Life would probably be easier if you can afford to find a good plan with almost complete freedom to go where you want. This might depend on where you live, work, income, etc. Non-CLL stuff…
I grew up with Kaiser and my parents were on Kaiser. My mother died in a Kaiser hospital. My dad moved to where I lived and changed to doctors there. He was astounded at what better care he received once he moved, and conversely, what poor care he had at Kaiser.
If you can see a CLL specialist in another institution, I would “run”, not “walk” to the other institution.
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