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.

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?

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)

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).

steiner | @steiner | Mar 21 12:14am

I have not been monitored since Friday 11 October 2024, for blood work, that was over 5 months ago, and I was to be monitored quarterly. Should I contact my GP to ask for a referral, or my Consultant directly in writing? What would you do? Thank you

Lori, Volunteer Mentor | @loribmt | Mar 21 10:18am

In reply to @steiner "I have not been monitored since Friday 11 October 2024, for blood work, that was over..." + (show)

Hi @steiner. If you were to be monitored quarterly for blood work and it’s now at 5 months, I’d definitely call your doctor and set up an appointment.

I’m a little confused, was this supposed to be with an oncologist? Have you had an appointment with that office before? If so, you can just call that office to set up an appointment. If you are seeing a new doctor and need a referral then call your GP for that referral.

Were you diagnosed with Primary cutaneous marginal zone B-cell lymphoma? Was this through an hematologist oncologist?

steiner | @steiner | Mar 21 12:31pm

In reply to @loribmt "Hi @steiner. If you were to be monitored quarterly for blood work and it’s now at..." + (show)

Hi Lori,
Yes. It was quite a shock for myself and my family. I was told I had a basal cell carcinoma. It was on my forehead. I had been feeling extraordinarily fatigued. They excised it. It was sent for biopsy by my Consultant Dermatologist. I was called back in after about 3 months (after it had been excused) to be informed it was in fact a Primary Cutaneous Marginal zone B-Cell lymphoma. When told I nearly fainted. My Consultant Dermatologist referred me off to a Consultant Haematologist.

Yes I am under the care of a haematologist Oncologist. My blood work was being carried out quarterly. I think they have forgotten about me. I don’t quite know how that could happen? I will call that office on Monday 24 March 2025 to set up an appointment. M
Many thanks for your help and assistance

Kindest regards

steiner | @steiner | Mar 21 12:51pm

In reply to @steiner "Hi Lori, Yes. It was quite a shock for myself and my family. I was told..." + (show)

Hi Lori,
I had asked for a MOHs Surgery for the excision of what I was initially told was a Basal Cell Carcinoma but was told it was unnecessary by my Consultant Dermatologist. As said above my biopsy came back 3 months later approximately I was then told it was a Primary Cutaneous Marginal Zone B-Cell lymphoma

Kindest regards

steiner | @steiner | Mar 21 1:01pm

Hi Georgie,
Yes. I would very much like to connect with other people who have also had a diagnosis of Primary Cutaneous Marginal Zone B-Cell lymphoma.

Many thanks

Kindest regards

Lori, Volunteer Mentor | @loribmt | Mar 21 9:28pm

In reply to @steiner "Hi Lori, Yes. It was quite a shock for myself and my family. I was told..." + (show)

That had to be a heckuva shock to find out your basal cell lesion was in fact, PCMZL. If you were on a quarterly recall from the hematologist, I’m thinking as you are, that somehow your name wasn’t on the call list for this month. So, don’t hesitate to call and set up an appointment.

Are you currently on any treatment for your PCMZL?

steiner | @steiner | Mar 22 12:40pm

Hi Lori,
It was “VERY” shocking to find out my Basal Cell lesion was actually a PCMZL. I had waited approximately 10 months for the treatment and was upset because I had requested MOHS Surgery but was told it was unnecessary. I asked 3 Consultants before my excision what the odd looking red circle was around the supposed Basal Cell lesion? only to be told they didn’t know as they hadn’t seen it before?
I was on a quarterly recall list for blood work. I was expecting an appointment for 11 February 2025 (having had bloods done on 11 October 2024) but no appointment arrived? I will call on Monday 24 March 2025 to ask for one.

I have had no treatment (other than the excision) and quarterly bloods taken.

My question is: If they stop taking quarterly bloods how would they be able to wait and observe?

Many thanks

Kindest regards

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