I was diagnosed with Primary Cutaneous Marginal Zone Lymphoma (PCMZL) in 2018. It is a rare type of indolent (slow moving) nonHodgkins Cutaneous B-Cell lymphoma.
I was dxed after surgery to remove the initial purple nodules on my arm which were then sent in for biopsy. It was benign, but deemed "atypical" and sent to a 2nd lab which dxed it as PCMZL.
Since the particular type of lymphoma I have is indolent and people generally die from something else WITH it, but not because of it - I was advised by my very trusted primary care D.O. to remain being monitored quarterly as a watch & wait patient. Side effects and all of the risks associated with more aggressive approaches which may or may not help are not worth it. My PCP is monitoring and overseeing my own natural care plans.
I am pretty much left to find ways to manage symptoms myself and just live my life as best I can. Since it is so rare and I live in a rural area, most of the local medical community have never even heard of it, yet alone have any experience treating it. Even in large cities with the best of hospitals & medical centers, it appears that nobody really knows for sure what to do for us.
Since the dx, I have learned there are many different subtypes of these rare nonHodgkins Cutaneous B Cell Lymphomas. Some folks seem to be having a hard time getting a precise dx of exactly which subtype they have. I feel fortunate to at least know that much.
I was diagnosed with Burkittslymphoma in 1974. I was then given a total hysterectomy and a bilateral sapingo oopherectomy at only two years old. I am now ill and no one wants to operate due to the surgery. I literally feel like I’m dying and no one will help me.
I was diagnosed with Burkittslymphoma in 1974. I was then given a total hysterectomy and a bilateral sapingo oopherectomy at only two years old. I am now ill and no one wants to operate due to the surgery. I literally feel like I’m dying and no one will help me.
Welcome to Connect, @noh8pink. My goodness, you’ve certainly had your share of medical drama from an early start in life. How tragic to have a hysterectomy and oopherectomy at the age of two…that was 50 years ago by my reckoning. Have you had a recurrence of cancer that requires surgery? What illness are you experiencing?
Welcome to Connect, @noh8pink. My goodness, you’ve certainly had your share of medical drama from an early start in life. How tragic to have a hysterectomy and oopherectomy at the age of two…that was 50 years ago by my reckoning. Have you had a recurrence of cancer that requires surgery? What illness are you experiencing?
I don’t know what’s going on. Somethings wrong with my colon and my bowel just got home from the hospital again hopefully will find out soon because I haven’t been feeling well. All within the span of a month I’ve gone from feeling healthy to feeling mousy.
I don’t know what’s going on. Somethings wrong with my colon and my bowel just got home from the hospital again hopefully will find out soon because I haven’t been feeling well. All within the span of a month I’ve gone from feeling healthy to feeling mousy.
I was diagnosed with Primary Cutaneous Marginal Zone Lymphoma (PCMZL) in 2018. It is a rare type of indolent (slow moving) nonHodgkins Cutaneous B-Cell lymphoma.
I was dxed after surgery to remove the initial purple nodules on my arm which were then sent in for biopsy. It was benign, but deemed "atypical" and sent to a 2nd lab which dxed it as PCMZL.
Since the particular type of lymphoma I have is indolent and people generally die from something else WITH it, but not because of it - I was advised by my very trusted primary care D.O. to remain being monitored quarterly as a watch & wait patient. Side effects and all of the risks associated with more aggressive approaches which may or may not help are not worth it. My PCP is monitoring and overseeing my own natural care plans.
I am pretty much left to find ways to manage symptoms myself and just live my life as best I can. Since it is so rare and I live in a rural area, most of the local medical community have never even heard of it, yet alone have any experience treating it. Even in large cities with the best of hospitals & medical centers, it appears that nobody really knows for sure what to do for us.
Since the dx, I have learned there are many different subtypes of these rare nonHodgkins Cutaneous B Cell Lymphomas. Some folks seem to be having a hard time getting a precise dx of exactly which subtype they have. I feel fortunate to at least know that much.
Hi Georgie,
I was actually diagnosed with Primary Cutaneous Marginal Zone Lymphoma B-Cell (PCMZL) in 2022 but it had been growing on my forehead from 2019 having started as a really minuscule little red dot. I was just ignoring it as I was busy at work and thought it was a spot or skin blemish of some kind.
I have been also been told it is a very rare type of indolent nonhodgins Cutaneous B-Cell lymphoma.
It was on my forehead, 1 red lump with a red almost target 🎯 like circle ⭕️ around it. I was initially told it was a basal Cell Carcinoma and it was only approximately 3 - 4 months after my surgery in September 2022 to remove it, that the biopsy results came back to reveal that it was in fact a PCMZL and had never ever been a BCC - which I was very upset about.
I had been under phenomenal stress at work before my diagnosis and had been feeling extraordinarily tired but no other symptoms to my knowledge.
I have had no other treatment whatsoever except the surgery to remove it. I had asked for MOHS Surgery but was told it was unnecessary as it was a BCC and then when the biopsy came back months afterwards saying it was a PCMZL I was and am very disappointed that it wasn’t incised by MOHS Surgery, for obvious reasons.
I have not had it dxed? I wasn’t offered this or told about it? I don’t even know what dxed means?
a) How did you get the precise dx of exactly which subtype you have? Is it important and helpful to ascertain this and why exactly?
I am being monitored quarterly by getting my bloods done as a wait and watch patient, as I think you are.
b) What are your own natural care plans? I have been pretty much left to manage my symptoms and live my life as best I can too.
c) What were/are your symptoms if you don’t mind me asking?
i) before your surgery in 2018?
and
ii) 6 years plus later?
d) did you 1st notice visible signs of it in 2018? Or was 2018 the date of your surgery to remove it? And, did you have MOHS Surgery?
e) how had you been feeling before your diagnosis and surgery in 2018? And, how have you been feeling between 2018-2025?
f) did you have it staged? Did you have a PET scan or a CT scan? I haven’t.
g) have you any clue what caused it?
h) have you ever had a reoccurrence of your PCMZL? And, had it incised?
i) was it a great shock to you?
i) how soon did you return to work or have you returned?
No one where I live had ever heard of PCMZL before or ever come across it (either before or since my biopsy came back saying it was a PCMZL B-Cell nonhodgins lymphoma). I was told by my Consultant that 1 in 3 million people had it and they didn’t know why or how they/I got it?
It has been quite a shock both to me and my family.
Any answers you can give me would be appreciated as I don’t know anyone else who had a diagnosis of a PCMZL.
Wow, way too many questions at once! I posted all that quite some time ago. Things changed and I am no longer a watch and wait patient.
After consult with a radiation oncologist, I received successful resolution regarding 2 different external issues (several months apart) via very low dose radiation treatments on 2 consecutive days. 5min. one day, 15 min. the next.
He then advised a PET scan to see if anything showed up internally, which it did. He then referred me to a specialist for oncology hematology.
When I began having adverse symptoms that were possibly related to what was on that PET scan, I consulted with the hematologist. After another PET scan, he advised Rituximab only infusions 4x weekly. I just completed those last Fri. 4.11.25. I felt better after the first one and with each infusion after.
I have a follow up appt. on 4.25. I finally feel a spark of hope that I will be one of the lucky ones who go into long term remission after receiving 4 weekly Rituximab infusions. It is a monoclonal antibody, not considered to be a chemo drug.
But I am left scratching my head because I did not know that PCMZL could cause problems internally. I am going to ask about that when I go for the follow up appt.
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I was diagnosed with Primary Cutaneous Marginal Zone Lymphoma (PCMZL) in 2018. It is a rare type of indolent (slow moving) nonHodgkins Cutaneous B-Cell lymphoma.
I was dxed after surgery to remove the initial purple nodules on my arm which were then sent in for biopsy. It was benign, but deemed "atypical" and sent to a 2nd lab which dxed it as PCMZL.
Since the particular type of lymphoma I have is indolent and people generally die from something else WITH it, but not because of it - I was advised by my very trusted primary care D.O. to remain being monitored quarterly as a watch & wait patient. Side effects and all of the risks associated with more aggressive approaches which may or may not help are not worth it. My PCP is monitoring and overseeing my own natural care plans.
I am pretty much left to find ways to manage symptoms myself and just live my life as best I can. Since it is so rare and I live in a rural area, most of the local medical community have never even heard of it, yet alone have any experience treating it. Even in large cities with the best of hospitals & medical centers, it appears that nobody really knows for sure what to do for us.
Since the dx, I have learned there are many different subtypes of these rare nonHodgkins Cutaneous B Cell Lymphomas. Some folks seem to be having a hard time getting a precise dx of exactly which subtype they have. I feel fortunate to at least know that much.
-
Like -
Helpful -
Hug
5 ReactionsI was diagnosed with Burkittslymphoma in 1974. I was then given a total hysterectomy and a bilateral sapingo oopherectomy at only two years old. I am now ill and no one wants to operate due to the surgery. I literally feel like I’m dying and no one will help me.
Welcome to Connect, @noh8pink. My goodness, you’ve certainly had your share of medical drama from an early start in life. How tragic to have a hysterectomy and oopherectomy at the age of two…that was 50 years ago by my reckoning. Have you had a recurrence of cancer that requires surgery? What illness are you experiencing?
I don’t know what’s going on. Somethings wrong with my colon and my bowel just got home from the hospital again hopefully will find out soon because I haven’t been feeling well. All within the span of a month I’ve gone from feeling healthy to feeling mousy.
-
Like -
Helpful -
Hug
1 ReactionI hope you get some answers soon so that you can get back to feeling well again! Will you please let me know what you find out? Sending out a hug…
Hi Georgie,
I was actually diagnosed with Primary Cutaneous Marginal Zone Lymphoma B-Cell (PCMZL) in 2022 but it had been growing on my forehead from 2019 having started as a really minuscule little red dot. I was just ignoring it as I was busy at work and thought it was a spot or skin blemish of some kind.
I have been also been told it is a very rare type of indolent nonhodgins Cutaneous B-Cell lymphoma.
It was on my forehead, 1 red lump with a red almost target 🎯 like circle ⭕️ around it. I was initially told it was a basal Cell Carcinoma and it was only approximately 3 - 4 months after my surgery in September 2022 to remove it, that the biopsy results came back to reveal that it was in fact a PCMZL and had never ever been a BCC - which I was very upset about.
I had been under phenomenal stress at work before my diagnosis and had been feeling extraordinarily tired but no other symptoms to my knowledge.
I have had no other treatment whatsoever except the surgery to remove it. I had asked for MOHS Surgery but was told it was unnecessary as it was a BCC and then when the biopsy came back months afterwards saying it was a PCMZL I was and am very disappointed that it wasn’t incised by MOHS Surgery, for obvious reasons.
I have not had it dxed? I wasn’t offered this or told about it? I don’t even know what dxed means?
a) How did you get the precise dx of exactly which subtype you have? Is it important and helpful to ascertain this and why exactly?
I am being monitored quarterly by getting my bloods done as a wait and watch patient, as I think you are.
b) What are your own natural care plans? I have been pretty much left to manage my symptoms and live my life as best I can too.
c) What were/are your symptoms if you don’t mind me asking?
i) before your surgery in 2018?
and
ii) 6 years plus later?
d) did you 1st notice visible signs of it in 2018? Or was 2018 the date of your surgery to remove it? And, did you have MOHS Surgery?
e) how had you been feeling before your diagnosis and surgery in 2018? And, how have you been feeling between 2018-2025?
f) did you have it staged? Did you have a PET scan or a CT scan? I haven’t.
g) have you any clue what caused it?
h) have you ever had a reoccurrence of your PCMZL? And, had it incised?
i) was it a great shock to you?
i) how soon did you return to work or have you returned?
No one where I live had ever heard of PCMZL before or ever come across it (either before or since my biopsy came back saying it was a PCMZL B-Cell nonhodgins lymphoma). I was told by my Consultant that 1 in 3 million people had it and they didn’t know why or how they/I got it?
It has been quite a shock both to me and my family.
Any answers you can give me would be appreciated as I don’t know anyone else who had a diagnosis of a PCMZL.
Kind regards
-
Like -
Helpful -
Hug
1 ReactionWow, way too many questions at once! I posted all that quite some time ago. Things changed and I am no longer a watch and wait patient.
After consult with a radiation oncologist, I received successful resolution regarding 2 different external issues (several months apart) via very low dose radiation treatments on 2 consecutive days. 5min. one day, 15 min. the next.
He then advised a PET scan to see if anything showed up internally, which it did. He then referred me to a specialist for oncology hematology.
When I began having adverse symptoms that were possibly related to what was on that PET scan, I consulted with the hematologist. After another PET scan, he advised Rituximab only infusions 4x weekly. I just completed those last Fri. 4.11.25. I felt better after the first one and with each infusion after.
I have a follow up appt. on 4.25. I finally feel a spark of hope that I will be one of the lucky ones who go into long term remission after receiving 4 weekly Rituximab infusions. It is a monoclonal antibody, not considered to be a chemo drug.
But I am left scratching my head because I did not know that PCMZL could cause problems internally. I am going to ask about that when I go for the follow up appt.