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Primary cutaneous marginal zone B-cell lymphoma (PCMZL)

Posted by georgie2 @georgie2, Jan 23, 2023

Looking to connect with others also diagnosed with PCMZL. This is a rare type of nonHodgkins, B-cell cutaneous lymphoma. This past year, I began an informal private FB support group called PCMZLers which is small, but growing.

I was diagnosed in 2018 after surgical removal of two odd purple nodules on my arm. My biopsy sample (which was benign, but deemed "atypical") was sent to two different labs for a conclusive diagnosis.

Since then, I have been a wait & watch patient, managing symptoms mostly via my own natural care plan. I am being monitored quarterly by my primary care physician who is a D.O.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 5, 2023

Welcome @georgie2, as you know primary cutaneous marginal zone B-cell lymphoma (PCMZL) is a low-grade malignant B-cell lymphoma and it is very rare. I'm so glad that the odd lesions on your skin were sent for further investigation to confirm your diagnosis.

Many patients are nervous about being put on watch and wait. I prefer to call it active surveillance because you are being monitored. Did this treatment approach make you nervous? What testing is done during follow-up?

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georgie2 | @georgie2 | Feb 7, 2023
In reply to @colleenyoung "Welcome @georgie2, as you know primary cutaneous marginal zone B-cell lymphoma (PCMZL) is a low-grade malignant..." + (show)
@colleenyoung

Welcome @georgie2, as you know primary cutaneous marginal zone B-cell lymphoma (PCMZL) is a low-grade malignant B-cell lymphoma and it is very rare. I'm so glad that the odd lesions on your skin were sent for further investigation to confirm your diagnosis.

Many patients are nervous about being put on watch and wait. I prefer to call it active surveillance because you are being monitored. Did this treatment approach make you nervous? What testing is done during follow-up?

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Quite the contrary, I am very relaxed about the wait & watch approach. I'm not in a crisis or anything & finding ways to manage status quo symptoms pretty well.

I don't really have any kinds of tests done on my followups for PCMZL, unless a need for one were to come up. Just routine bloodwork now and then. Mostly that's due to past history of AITP (longterm remission), then subsequently AIHA (also longterm remission).

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