What value screening for CLL?: We are well aware... - CLL Support

CLL Support

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What value screening for CLL?

AussieNeil profile image
8 Replies

We are well aware of public health cancer screening programs and I'm certain I'm not the only one here wondering if screening for CLL would help our community. Here's a fairly clear explanation by academics Katy Bell, Alexandra Barratt and Andrew Hayen from New South Wales, Australia, of situations in which cancer screening can be helpful - and why using cancer survival rates to promote screening, as is often done, is misleading!


As the article concludes: "Death rates are improved only where screening has led to a real benefit; they are unchanged where screening has no effect on natural disease progression.

Survival statistics, even when they are used by well-meaning advocates who misinterpret them as a measure of the success of cancer screening, are misleading. They tell us nothing about lives saved and the potential value of screening programs."

So would screening for CLL help our community? Given CLL is quite rare and the usual outcome is for the patient to go onto 'Watch and Wait", along with the confusion of whether Monoclonal B-lymphocytosis (MBL) may or may not progress to CLL, I think not. What I do think would be of value is for doctors to be more proactive in following up unusual blood test results - or being more aware of leukaemia or lymphoma as a cause worth investigating for symptoms that can quite often be dismissed.

What do you think?


Photo: This shot looks to me like some bizarre gladiator contest where a contestant with those giant hands you see in sports audiences is taking on a giant bee. I guess I need more sleep...

8 Replies
Cllcanada profile image
CllcanadaTop Poster CURE Hero

I agree, better investigation... better education of GPs and down the line.. NPs, PAs and techs...

But why put my children through years of unecessary concern... CLL does not follow Mendelian progression...

CLL jumps around, skips generations, might effect a son in one generation, then the daughter of a daughter's son...


I LOVE pedigrees


But CLL is non Mendelian


Nice shot!

MsLockYourPosts profile image

I think doing basic blood tests routinely and following up when numbers are out of line is important. Many have posted that when they were diagnosed they discovered that they had labs that had been out of line, in some cases, for several years, before their doctor reacted. I had labs that were so out of line that I finally took them to my vet, who agreed that my doctors were ignoring things that they shouldn't have been. Screening specifically for CLL or other blood cancers does not seem to me to be appropriate unless or until one has either labs or symptoms that indicate that more testing should be done.

In my family - father's side - we have multiple myeloma, follicular, CLL, and now AML, but that is out of about 40 people through the generations. We have looked at the family health issues (breast, prostate, and lung cancer are also in there) and have made sure that everyone is aware that they need to alert their doctors of the family history so that if tests show something of concern their doctors will know to check for those things. Beyond that, everyone is getting on with life.

ThreeWs profile image

I am wondering if screening that would detect not only monoclonal populations of B cells at low levels but some of the more subtle markers in the transcriptome, for example, could lead to important data filling in some of the mysteries of leukemogenesis and progression biology given that we now have the tools to identify and chart markers in a way never before possible?

While I can see the rationale for mitigation of unnecessary worry by not screening I could make an argument that if poor prognostic markers were uncovered as a result of screening some folks might want to know, to better plan for the future of not only their personal goals but that of their family's.

I guess I am in the camp of pro information no matter whether it is potentially bad or actionable at the time of screening. Screening for CLL might be analogous to Climate Change on a personal scale. No one can prove with certainty that we have all the information or a handle on the consequences of climate change but does that mean that we should ignore the evidence at hand to continue the party?

Individualized health management will depend on the dynamic monitoring and alteration of the immune system(s) in the future and CLL is an exceptional model to study the differing ways those systems can fail us.

If privacy can be functionally dealt with and that may be a big if, my vote is pro-screening.


I am a very big supporter of annual blood analysis as a general preventative medicine. For 20+ years I've gotten one every January consisting of a Metabolic panel, CBC w/differentials, Lipid panel, Thyroid panel and CRP plus PSA. Since entering a clinical trial they are done and paid for me but last time I self paid, which was 8 years ago, it was abut U$ 225 for the lot, which I considered very cheap health insurance.

And when my CLL developed the docs said my having such a good history made diagnosis easier.

SeymourB profile image

Mukherjee makes a good case against early detection as the default policy for all cancers in his book, The Emperor of All Maladies: A Biography of Cancer. It has led to much needless treatment, more suffering, and economic waste. We have been sold early detection as a key strategy for in the "war on cancer" for decades. It has indeed been an important factor in a few cancers, but they actually seem to be the exception.

After taking a few courses on genetic bio-ethics. I think screening a whole population, while not having any useful therapy is counterproductive, and possibly unethical and even cruel. If a person wants such screenings, then I think they should be able to have them. But as general public policy, I think it's bad.

The genomics revolution is making this a more urgent topic. Some states mandate genetic screening at birth. Should parents be informed of possibilities based on preliminary science, and for small risk factors that might actually be wrong? How small of a risk factor should trigger disclosure? What if the genetics are a small part of risk, and environment is the largest factor?

There should be plenty enough volunteers for exploring the etiology of CLL without a public health screening program. If science reveals some actionable early markers in blood or genetic tests, then the whole public policy situation changes. I'll be watching and waiting in the meantime.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to SeymourB


SeymourB profile image
SeymourB in reply to Cllcanada

CD160 for screening, or for future focused therapy?

Once the therapy is there, and proven, then I say, screen everyone over the age of X, where X is yet to be determined.

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply to SeymourB

Sorry... MRD negativity... post treatment screening...


Pretreatment early canary in the coal mine.. CD23


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