Leukemia diagnosis

[Mariacat01]

I am confused .I was told I had leukemia .I now have a diagnosis of lymphoproliferative disorder .anybody got any answers please

[cajunjeff]

Cll (chronic lymphocytic leukemia) is a type of lymphoproliferative disorder, as are other illnesses where lymphocytes multiply abnormally.

[Mariacat01 in reply to cajunjeff]

Thank you for your reply.i was very confused .I just couldn't find an answer

[cajunjeff in reply to Mariacat01]

You are welcome. Here is a wiki article that might help you:

en.wikipedia.org/wiki/Lymph...

[Mariacat01 in reply to cajunjeff]

Many thanks I will have a read

[lankisterguy Volunteer]

cajunjeff provided an excellent link to this list

en.wikipedia.org/wiki/Lymph...

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And at some point some medical person may also mention other categories like NHLs

en.wikipedia.org/wiki/Non-H... and CLL falls into that broad group

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We can also be classed as CLL / SLL in Leukemias or Lymphomas

Chronic Lymphocytic Leukemia

Small Lymphocytic Lymphoma

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It can be confusing since medical science has so many ways to create categories for different purposes. It's like learning a different language.

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Len

[Mariacat01 in reply to lankisterguy]

You are right .thank you

[Mariacat01 in reply to Mariacat01]

Thank you guys .you have been really helpful .I really appreciate your answers

[Shedman]

Hi. How were you first diagnosed — that is, on what basis: high blood count or biopsy of a swollen lymph node?If blood count, do you know what that initial blood count was?

When was this (presumably mid 2018)?

Which country are you in? — have you got a CLL specialist, or are you seen by more generalist oncology or haematology consultants?

[it might be helpful to put some basic info in your profile, that way these things are accessible for all future questions - it helps with getting the best quality of answers appropriate to your situation]

[Mariacat01 in reply to Shedman]

Hi I had a couple of blood tests .then had cat scan and bone marrow biopsy. I am in the UK. I was diagnosed in 2019 .I just have a consultant .at the moment it's just tel consultations because of covid .but my appointments have been reduced to once yearly

[Jm954 Administrator in reply to Mariacat01]

Maria, occasionally doctors will used words like lymphoproliferative disorder when they don't want to use the work leukaemia (perhaps because he hasn't seen you face to face) or if the final diagnosis is still slightly uncertain in terms of exactly which type of lymphoproliferative disorder it is.

In the UK , even if your haematologist doesn't have a special research interest in CLL, he will almost certainly have seen and treated lots of CLL patients and there are treatment guidelines that have to be followed both for when to start treatment and what to give. That treatment/management decision will also be made collectively, by a team of all the haematologists at your centre so you are not reliant on the expertise of just one person.

In the USA there are lots of generalist oncology doctors who usually deal with solid tumours but dabble in CLL treatment so it's important to get a CLL specialist's advice in those circumstances. That does not happen in the UK.

Hope this helps

Jackie

[Mariacat01 in reply to Jm954]

Thank you .I spoke to him face to face at my first appointment.

[Mariacat01 in reply to Jm954]

Thank you

[Big_Dee in reply to Jm954]

Hello Jm954

You never know, luck of the draw. My GP was first one to diagnose my CLL, but he had handled many leukemia/Lymphomas cases. He was also the one who performed my BMB to confirm CLL.

[Jm954 Administrator in reply to Big_Dee]

Sounds like your GP is a keeper

[Mariacat01 in reply to Shedman]

Sorry 2018 .had a blood test twice that year.

[Shedman in reply to Mariacat01]

‘Consultant’ — have you googled to see what their specialism is?

Some haematology consultants are specialists in CLL, though not all..

..oncology consultants are rarely CLL specialists..

It is helpful to see that you have a good person applying expertise to your case.

Typical diagnosis is either a blood test followed by a more detailed check of those blood cells.. to confirm..

Else, where blood count is normal, the SLL presentation typically arises when a patient presents with lymphadenopathy (lumpy lymph nodes).. after ruling out other possibilities, a lymph node biopsy - and again a detailed look at the b-cell lymphocytes to confirm what the disorder is..

We are all tending to get telephone consults through the last year.

After all those tests, the question is whether they have a clear diagnosis of your blood disorder, or some uncertainty of the category — I’d say that you deserve to know!

First to work out, if you can, whether your consultant is a suitable specialist — if you PM (via chat) one of the UK admins, they might be able to help confirm this..

[Mariacat01 in reply to Shedman]

Can I message you tomorrow as I have my blood test results .its a long story I was unaware of a problem .I only found out when a locum gp wrote to me .I can explain it all tomorrow

[Shedman in reply to Mariacat01]

Yes. Of course.

[Mariacat01 in reply to Shedman]

Brill I will speak tomorrow.thank u

[Uplawmoorlass]

I have just recently been diagnosed. On my notes it initially stated lymphoproliferative disorder then after seeing a haematologist and a cat scan I was diagnosed with MCL. However after a bone marrow biopsy last month, I had a phone consultation 3 weeks ago and was rediagnosed with CLL and on watch and wait. I’m also in the uk and would like to hear what your blood counts are too. It’s all so confusing and difficult getting diagnoses over the phone but reading about other people’s experiences and having their support is helping me to understand.

[ChattahoocheeBoy in reply to Uplawmoorlass]

My CLL diagnosis was noted when I saw wbc go steadily up but at a count of about 20 still on watch & wait since it apparently is of no benefit to have treatment early??

[Mariacat01 in reply to ChattahoocheeBoy]

Same here .just once a year appointment

[ChattahoocheeBoy in reply to Mariacat01]

Thanks for ur response😊

[Mariacat01 in reply to ChattahoocheeBoy]

I have come to the conclusion that if I don't need any treatment I am going to put it to the back of my mind and get on with life

[ChattahoocheeBoy in reply to Mariacat01]

Probably a good mental health decision...it does nag your subconscious! In my case also juggling couple other serious issues so can be easy to become overwhelmed! Thanx

[Mariacat01 in reply to ChattahoocheeBoy]

Yes definitely.i tend yo start thinking more when I am due to get my blood test done .take care

[Derron256 in reply to Mariacat01]

If you don’t mind me asking what was your symptoms before diagnosis.

[Mariacat01 in reply to Derron256]

I didn't have any .it was picked up on a routine blood test

[AlphaOscar in reply to ChattahoocheeBoy]

Same for me too, wbc was 21 in 2017, now at 29 watch and waiting I am in the UK at the QE Birmingham under Prof Moss, lovely man

[Blue2018]

Wow, never heard of this diagnosis

[Mend123]

There’s also something called MBL. Monoclonal B cell lymphocytosis which is apparently a precursor to CLL and other blood cancers.

[Gypsysprite]

Lymphoproliferative disorders are a set of disorders characterized by the abnormal proliferation of lymphocytes into a monoclonal lymphocytosis. The two major types of lymphocytes are B cells and T cells, which are derived from pluripotent hematopoietic stem cells in the bone marrow. Individuals who have some sort of dysfunction with their immune system are susceptible to develop a lymphoproliferative disorder because when any of the numerous control points of the immune system become dysfunctional, immunodeficiency or deregulation of lymphocytes is more likely to occur. There are several inherited gene mutations that have been identified to cause lymphoproliferative disorders; however, there are also acquired and iatrogenic causes