Just wondering...: Hi all. I was diagnosed with... - CLL Support

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Just wondering...

Martine1969 profile image
5 Replies

Hi all. I was diagnosed with low cll beginning of the year, with population under 5 so not officially cll yet. Over the last months I developed swollen nodes under arms and in groin areas, both sides. They are just over 1cm. The hematologist said not to worry, only to worry if they feel spongy and mine are very hard, knotty. I thought okay, not to worry. She didn't want to do CT because of radiation. But now I read something about hard nodes having a high chance of being malignant. I am definitely not the worrying type, but should I have asked for more tests? I am seeing her again in 6 months. Thanks!

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Martine1969 profile image
Martine1969
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AussieNeil profile image
AussieNeilPartnerAdministrator

Given you have an MBL/CLL diagnosis, you do already have malignant (but a chronic, slow growing type) of blood cancer in which the malignant B-lymphocytes collect in the nodes, spleen and bone marrow, causing them to swell. Given you now have lymph node involvement with negligible blood involvement, you'd be classified now as having the SLL form of CLL/SLL - Small Lymphocytic Lymphoma: leukaemia.org.au/blood-canc...

healthunlocked.com/cllsuppo...

Be reassured that you are in the early stages of this illness; I was diagnosed with stage IV CLL/SLL nearly 9 years ago and am still in watch and wait. That's a very good illustration of the difference between chronic and acute malignancies :)

Do you have a reference to what you read about hard nodes being malignant? It's probably not at all relevant to someone with CLL/SLL.

Neil

Martine1969 profile image
Martine1969 in reply toAussieNeil

Thank you. Yes, probably not relevant at all :). I will continue with not being the worrying type :).

colincll10 profile image
colincll10 in reply toAussieNeil

this is good news eg w n w after nine years. well done. i saw somone on here saying treatment in fouryears was norn that isnt the case. im not diluting the seriousness here but i have many freind in the cancer ward with twelve eighteen w n w and couple twenty five years not long ago treated. so keep chinup. there are times when lymphs swell due to virus like i hadlast year yes scary but they do sometimes flair up not due to cancer.

Hoffy profile image
Hoffy

An MRI is more expensive but does the same thing and does not have the Radiation.

I am not sure if it is needed though. I am no expert,

Cllcanada profile image
CllcanadaTop Poster CURE Hero in reply toHoffy

Depends what you are looking at ...MRIs are better at somethings, particularly tissue differences.. like looking for tumours.

~chris

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