Oncology doctors and experiences

Hi this is my understanding of your position. In a very simplistic overview CLL is usually CD5 positive (and typically CD23 positive), whereas LPL is generally CD5 negative and CD20 positive. So if your bone marrow report shows CD5 negative B cells with lymphoplasmacytic features, that may be why your latest doctor feels this is LPL rather than CLL. If CD20 is very bright (CD20++) then you should ask if Marginal Zone Lymphoma or something else is at play. If both are positive CD5 and CD20 then it may take a bit more work to figure out what is going on.

It might be worth getting the actual marrow pathology report reviewed at the cancer centre, as that should help clarify exactly what the abnormal B-cell population represents. LPL can sometimes be difficult to distinguish from other B-cell disorders. Maybe ask for it to be looked at by a Centre Of excellence. I am afraid that Heamatologists and Oncologists are like all of us, good and bad. These rare manifestations need a little more effort on their part, but it should be fairly easy to distinguish if CLL/LPL or a possible combination of both from your marrow report, but if unusual then an specialist maybe required.

Jon

It's very simple to look up the qualifications of any doctor as far as education, training, experience and expertise that can be tied to any published articles and their reception in the medical community. I go to a local hospital affiliated hematology-oncology practice, but the doctor I see has impressive credentials and several well regarded published articles. Not every local doctor is a country bumpkin and not every doctor affiliated with the large and nationally recognized centers is equally qualified. Ultimately, each of us has to have a certain comfort level with our doctors that only we as individuals can determine. Having faith in our doctors is a large factor in our treatment.

@jonyb Thank you for your response and the information 😊. My bone biopsy report diagnosis states: small monoclonal CD5-positive B-cell population. I am also CD6-positive B cell population.

@suzjlance Yes interesting and I understand why they maybe having problems. This is very complicated so just ignore if you want. My understanding and I am not an expert is CD5 positivity can certainly be seen in CLL, but that CD5 alone doesn't establish CLL. I would be interested to know whether your marrow/flow report mentions CD20, CD23, CD200, FMC7 and light-chain restriction. LPL is usually CD5 negative, although a small minority of LPL cases can be CD5 positive, so perhaps that is part of the reason your doctors have interpreted the findings differently. CD6 if I remember is often associated with T Cells not B Cells so are you sure it is CD6? it can ocassionaly be B Cell I think. I personally think you need the marrow looked at by one of the true experts and the USA has many, Mayo used to have Dr Ansell who is very good and Dana faber has Dr Castello's team, I am not sure if these still take new patients but their teams do. I have heard the argument that not all these rare Lymphoma's can be diagnosed fully and it does not always matter, my personal opinion is try and find out as closely as you can so you understand what to look out for if on active monitoring and/or how to best treat if needed.

I forgot to add did you have anything on MY88, normally MYD88 L265P or MYD88 WT (Wild Type, normal) in LPL if Waldenstroms (LPL IgM) then this is normally MYD88 L265P (aprox 95%) and if LPL is IgG, IgA or Non Secretory then around 40 to 60% have the Wild Type.

I am sorry you are going through this confusion but from my wife's LPL I know how little many Haematologists (except the real experts) understand about marrow reports and it has taken me around 3 years to understand them a little, and I am still learning.

All the best

Jon

@suzjlance Yes interesting and I understand why they maybe having problems. This is very complicated so just ignore if you want. My understanding and I am not an expert is CD5 positivity can certainly be seen in CLL, but that CD5 alone doesn't establish CLL. I would be interested to know whether your marrow/flow report mentions CD20, CD23, CD200, FMC7 and light-chain restriction. LPL is usually CD5 negative, although a small minority of LPL cases can be CD5 positive, so perhaps that is part of the reason your doctors have interpreted the findings differently. CD6 if I remember is often associated with T Cells not B Cells so are you sure it is CD6? it can ocassionaly be B Cell I think. I personally think you need the marrow looked at by one of the true experts and the USA has many, Mayo used to have Dr Ansell who is very good and Dana faber has Dr Castello's team, I am not sure if these still take new patients but their teams do. I have heard the argument that not all these rare Lymphoma's can be diagnosed fully and it does not always matter, my personal opinion is try and find out as closely as you can so you understand what to look out for if on active monitoring and/or how to best treat if needed.

I forgot to add did you have anything on MY88, normally MYD88 L265P or MYD88 WT (Wild Type, normal) in LPL if Waldenstroms (LPL IgM) then this is normally MYD88 L265P (aprox 95%) and if LPL is IgG, IgA or Non Secretory then around 40 to 60% have the Wild Type.

I am sorry you are going through this confusion but from my wife's LPL I know how little many Haematologists (except the real experts) understand about marrow reports and it has taken me around 3 years to understand them a little, and I am still learning.

All the best

Jon

@jonyb Also have MYD88 L265P Wild TYPE (1gM)

Your point that not all country docs are bad or academic center docs are superstars is true, but when you are a hem/onc you first have to understand you may be presented with patients with a 100+ different blood disorders and there are likely some that don't fit neatly into a known presentation. You can't possibly be up-to-speed on all of them and need to be aware that those outside your comfort zone are best handled by doctors more likely to see more cases. Academic cancer centers see far more patients with vastly more diseases and have access to better labs and diagnostics on site than any local cancer center. Additionally, the pathologists at those large centers have researchers on site they work clinical trials and studies with who can help to better diagnose atypical disease presentations. I started my cancer journey at a nearby local clinic in the NYC area. After doing some basic research on current trials and drugs I quickly learned my local doctor was not up to speed as he didn't even know the new drugs being trialed and instead talked to me about 10 year old chemo regimen largely no longer recommended. I asked for a referral to Memorial Sloan Kettering and my world completed changed at the first appointment. I shared my experience with a disease expert at MSK and she said local doctors have a hard job, but they can't possibly be experts on every blood cancer nor keep up with the rapidly changing treatment landscape. She added, my disease, CLL/SLL is the only disease she treats because she too can't be an expert on multiple blood disorders.

@suzjlance yes yours is a complicated picture indeed from my little time spent looking and you need a true expert. From my little knowledge I would assume your CD20 and PAX5 positivity confirms the B-cell population, but CD5 positive with CD23 and CD200 negative doesn't look like the usual classic CLL pattern to me.

One thing I would check on your reports is the exact MYD88 wording. You mention both MYD88 mutation detected and MYD88 L265P wild type. If the detected mutation was specifically L265P, I don't think it could also be L265P wild type on the same test/sample. It may be a different MYD88 mutation or results from two or more different tests? If it truly says MD88 L265P Wild Type you need to question this, as it seems an unusual statement, but again I am no expert.

Also, was it definitely FMC7 rather than FM27? If you can post the exact MYD88 and flow cytometry wording, it might make the picture much clearer. So you have an IgM m-spike (paraprotein) and are your IgA and IgM surpressed? and any Free Light Chains, kappa or lambda? It is looking like an LPL to me, but does the marrow report say two populations as this would explain why your favourite Doctor said this. T Cells are also in the mix from what I can see but these could just be normal background readings? again it is in the wording and well beyond my knowledge.

As you have been told it is an LPL it maybe worth you joining the IWMF forum, Waldemstoms Macroglobulinemia this site has some people with much more knowledge and experience than me and they also sometimes have indirect access to some of the experts and you really do need a very cleaver Doctor to work this out for you.

All the best

Jon

@jonyb Sorry I meant to say IgG and IgA surpressed.