@steiner
Hello, Prior to being diagnosed, my only symptom was that I would bruise more easily, but wasn't concerning. I just thought it was age related. The blood test showed my lymphocytes high during an annual physical. Following this, there were a lot more blood tests, a bone marrow biopsy, lab testing, and a CT that showed my enlarged spleen. The analysis of all those tests provided the SMZL diagnosis. That was in 2019. In looking back to 2016 and 2017 blood tests, my lymphocytes and platelets were showing early changes and the Dr. felt I probably had SMZL in those earlier years. . Today, I have a bit of spleen discomfort and bruise easy but otherwise no problems. I see the Hematologist every 6 months.
How are you doing and what are your experiences. Thanks
@steiner
Hello, Prior to being diagnosed, my only symptom was that I would bruise more easily, but wasn't concerning. I just thought it was age related. The blood test showed my lymphocytes high during an annual physical. Following this, there were a lot more blood tests, a bone marrow biopsy, lab testing, and a CT that showed my enlarged spleen. The analysis of all those tests provided the SMZL diagnosis. That was in 2019. In looking back to 2016 and 2017 blood tests, my lymphocytes and platelets were showing early changes and the Dr. felt I probably had SMZL in those earlier years. . Today, I have a bit of spleen discomfort and bruise easy but otherwise no problems. I see the Hematologist every 6 months.
How are you doing and what are your experiences. Thanks
@stanleykent I’m so happy that your in remission. What treatment did you have to bring you there?
I was diagnosed with Primary Cutaneous Marginal Zone extra nodal B-Cell NHL in March 2022, had surgery in September 2022, complete excision of 1 isolated tumour which I thought was a spot, which didn’t go away and began to grow in size on my forehead. It had a halo around it or a target 🎯 like circle ⭕️, 3 Dermatologist Consultants diagnosed it as a Basal Cell Carcinoma, then after the biopsy called me back in to inform me it was a lymphoma. I was in shock. I had come to terms with it being a BCC & wanted it to be just that!!! I had no other treatment. Thank God I have had nothing since & today is 8 February 2026. I had no symptoms other than that hard red 2cm tumour which grew from the size of a flat pin head, other than feeling fatigued at about 11pm which is bedtime so I didn’t really think anything of it. I believe it was work/stress caused. I have an “incredibly” stressful job. Heading back to work this month. Are you back at work?
Take care
Hello, For me, in 2019, age 67, routine lab showed lymphocytes were higher than expected and with much additional testing, I received the SMZL diagnosis. Started watch and wait with checkups every 6 months. Mainly, my lymphocytes were gradually increasing and platelets were gradually decreasing In 2022 and I received 4 rituxan infusions. The treatment brought my blood tests back into normal ranges and reduced spleen size. Since then I'm on watch and wait and my six month checkups show gradual increases of lymphocytes, reduction of platelets (now both are out of normal range) and spleen size is increasing At some point, I expect this progression will require additional treatments.
I'm curious of your location, symptoms, testing, and diagnosis. As you have probably read, there seems to be a broad range patients, their symptoms, and treatments for SMZL. Since 2019, it is encouraging there has been additional treatments made available and expect there will be more in the future. Also want to say, it has been difficult, mentally, to live with this, but as time goes on it has become easier and has become my new normal.
Best wishes to you and feel free to ask any questions.
@stanleykent what do you hink caused it? Were you under stress about anything? Have you had PET or CT scans? What about your nutrition & exercise & sleep? any swollen lymph nodes or itching? Thanks
Take care
@stanleykent I’m so happy that your in remission. What treatment did you have to bring you there?
I was diagnosed with Primary Cutaneous Marginal Zone extra nodal B-Cell NHL in March 2022, had surgery in September 2022, complete excision of 1 isolated tumour which I thought was a spot, which didn’t go away and began to grow in size on my forehead. It had a halo around it or a target 🎯 like circle ⭕️, 3 Dermatologist Consultants diagnosed it as a Basal Cell Carcinoma, then after the biopsy called me back in to inform me it was a lymphoma. I was in shock. I had come to terms with it being a BCC & wanted it to be just that!!! I had no other treatment. Thank God I have had nothing since & today is 8 February 2026. I had no symptoms other than that hard red 2cm tumour which grew from the size of a flat pin head, other than feeling fatigued at about 11pm which is bedtime so I didn’t really think anything of it. I believe it was work/stress caused. I have an “incredibly” stressful job. Heading back to work this month. Are you back at work?
Take care
@waynepowell Hi, I got diagnosed in April 2025 with marginal zone lymphoma. My symptoms were swollen lymph nodes in front of my right ear. First they thought salivary stone- then possible mumps, after many blood tests, biopsy of that swollen lymphnode and my spleen was enlarged. I seem to get more “Raised areas” on my right forehead and my hearing was also getting muffled. I did 4 infusions in Aug. 2025 on Rituximab - the first one I had allergic reaction, they started again, slower, I got through it. I am in remission for now. I feel pretty good but I avoid crowds and sick people. I walk daily, eat organic, and thank god for another day. I am 64 years old and wonder if my years of using Round Up, ant killer, or pesticides on produce is why I got this? Anybody with this- what are your thoughts on why you got this?
Leeann
@stanleykent what do you hink caused it? Were you under stress about anything? Have you had PET or CT scans? What about your nutrition & exercise & sleep? any swollen lymph nodes or itching? Thanks
Take care
@steiner
Hello. I had not heard of your Primary Cutaneous Marginal Zone diagnosis, and does present the question of it's cause.
To answer your questions, I don't know what caused it. I had a certain amount of stress, but think everybody probably has stress in their life and how they deal with it. I retired in 2018 which ended the work stress. Nutrition....Have always ate fairly healthy but suppose I could have done better. For 5 years now, I do take a multiple vitamin, plus C, D, Zinc and Omega-3. Just hoping those supplements might help me and my immune system a bit. No problems with swollen lymph nodes or itching. PET ( not for SMZL) a couple times and get a CT every 6 months
In wondering about what caused this and my other medical problems, (My situation is a bit more complicated because since my SMZL diagnosis, I've also had two lung cancers and two skin cancers. ) I consulted with the the Clinic's genetic department and reviewed family medical history and in 2023 had genetic testing for all known cancer genes. None were identified. So I do not have any answers. Everything outside of a sterile bubble, could be suspect.... in my opinion !
In another posting, there is a reference made about Epigenetics by mrgreentea and I found that to be interesting.
@steiner
Hello. I had not heard of your Primary Cutaneous Marginal Zone diagnosis, and does present the question of it's cause.
To answer your questions, I don't know what caused it. I had a certain amount of stress, but think everybody probably has stress in their life and how they deal with it. I retired in 2018 which ended the work stress. Nutrition....Have always ate fairly healthy but suppose I could have done better. For 5 years now, I do take a multiple vitamin, plus C, D, Zinc and Omega-3. Just hoping those supplements might help me and my immune system a bit. No problems with swollen lymph nodes or itching. PET ( not for SMZL) a couple times and get a CT every 6 months
In wondering about what caused this and my other medical problems, (My situation is a bit more complicated because since my SMZL diagnosis, I've also had two lung cancers and two skin cancers. ) I consulted with the the Clinic's genetic department and reviewed family medical history and in 2023 had genetic testing for all known cancer genes. None were identified. So I do not have any answers. Everything outside of a sterile bubble, could be suspect.... in my opinion !
In another posting, there is a reference made about Epigenetics by mrgreentea and I found that to be interesting.
@stanleykent Don’t worry no one has ever heard of Primary Cutaneous Marginal Zone Extra Nodal B-Cell non-Hodgkin lymphoma because it’s extremely rare, actually 1 in 10 million people I’ve been informed! My Consultants were floored and very upset for me.
I’ve had nothing else ever (before or after) thank God.
To elaborate on cause, I was under “incredible” stress at work which meant I wasn’t eating or sleeping properly additionally not exercising. I have researched this. My immune system became weakened & enabled a chink in my defences for this to occur I believe.
I am not retired. I’m heading back to work to pay my bills - but this time I’ll be prepared.
I also found mrgreentea’s post very interesting. I’m reading up on it.
I’m very happy to hear you’re well now.
Take Care
Connect
Connect
Like
Helpful
Hug
@steiner
Hello, Prior to being diagnosed, my only symptom was that I would bruise more easily, but wasn't concerning. I just thought it was age related. The blood test showed my lymphocytes high during an annual physical. Following this, there were a lot more blood tests, a bone marrow biopsy, lab testing, and a CT that showed my enlarged spleen. The analysis of all those tests provided the SMZL diagnosis. That was in 2019. In looking back to 2016 and 2017 blood tests, my lymphocytes and platelets were showing early changes and the Dr. felt I probably had SMZL in those earlier years. . Today, I have a bit of spleen discomfort and bruise easy but otherwise no problems. I see the Hematologist every 6 months.
How are you doing and what are your experiences. Thanks
-
Like -
Helpful -
Hug
3 Reactions@stanleykent I’m so happy that your in remission. What treatment did you have to bring you there?
I was diagnosed with Primary Cutaneous Marginal Zone extra nodal B-Cell NHL in March 2022, had surgery in September 2022, complete excision of 1 isolated tumour which I thought was a spot, which didn’t go away and began to grow in size on my forehead. It had a halo around it or a target 🎯 like circle ⭕️, 3 Dermatologist Consultants diagnosed it as a Basal Cell Carcinoma, then after the biopsy called me back in to inform me it was a lymphoma. I was in shock. I had come to terms with it being a BCC & wanted it to be just that!!! I had no other treatment. Thank God I have had nothing since & today is 8 February 2026. I had no symptoms other than that hard red 2cm tumour which grew from the size of a flat pin head, other than feeling fatigued at about 11pm which is bedtime so I didn’t really think anything of it. I believe it was work/stress caused. I have an “incredibly” stressful job. Heading back to work this month. Are you back at work?
Take care
@stanleykent what do you hink caused it? Were you under stress about anything? Have you had PET or CT scans? What about your nutrition & exercise & sleep? any swollen lymph nodes or itching? Thanks
Take care
@steiner Hi, Regarding stress potentially causing cancers, you might look into epigenetics. There has been a LOT published on this (e.g., "Epigenetic Determinants of Cancer", https://pmc.ncbi.nlm.nih.gov/articles/PMC5008069/).
What caught my eye was the statement that epigenetic changes are reversible, so it looks like an interesting topic to explore further!
-
Like -
Helpful -
Hug
2 Reactions@waynepowell Hi, I got diagnosed in April 2025 with marginal zone lymphoma. My symptoms were swollen lymph nodes in front of my right ear. First they thought salivary stone- then possible mumps, after many blood tests, biopsy of that swollen lymphnode and my spleen was enlarged. I seem to get more “Raised areas” on my right forehead and my hearing was also getting muffled. I did 4 infusions in Aug. 2025 on Rituximab - the first one I had allergic reaction, they started again, slower, I got through it. I am in remission for now. I feel pretty good but I avoid crowds and sick people. I walk daily, eat organic, and thank god for another day. I am 64 years old and wonder if my years of using Round Up, ant killer, or pesticides on produce is why I got this? Anybody with this- what are your thoughts on why you got this?
Leeann
@steiner
Hello. I had not heard of your Primary Cutaneous Marginal Zone diagnosis, and does present the question of it's cause.
To answer your questions, I don't know what caused it. I had a certain amount of stress, but think everybody probably has stress in their life and how they deal with it. I retired in 2018 which ended the work stress. Nutrition....Have always ate fairly healthy but suppose I could have done better. For 5 years now, I do take a multiple vitamin, plus C, D, Zinc and Omega-3. Just hoping those supplements might help me and my immune system a bit. No problems with swollen lymph nodes or itching. PET ( not for SMZL) a couple times and get a CT every 6 months
In wondering about what caused this and my other medical problems, (My situation is a bit more complicated because since my SMZL diagnosis, I've also had two lung cancers and two skin cancers. ) I consulted with the the Clinic's genetic department and reviewed family medical history and in 2023 had genetic testing for all known cancer genes. None were identified. So I do not have any answers. Everything outside of a sterile bubble, could be suspect.... in my opinion !
In another posting, there is a reference made about Epigenetics by mrgreentea and I found that to be interesting.
-
Like -
Helpful -
Hug
2 Reactions@stanleykent Don’t worry no one has ever heard of Primary Cutaneous Marginal Zone Extra Nodal B-Cell non-Hodgkin lymphoma because it’s extremely rare, actually 1 in 10 million people I’ve been informed! My Consultants were floored and very upset for me.
I’ve had nothing else ever (before or after) thank God.
To elaborate on cause, I was under “incredible” stress at work which meant I wasn’t eating or sleeping properly additionally not exercising. I have researched this. My immune system became weakened & enabled a chink in my defences for this to occur I believe.
I am not retired. I’m heading back to work to pay my bills - but this time I’ll be prepared.
I also found mrgreentea’s post very interesting. I’m reading up on it.
I’m very happy to hear you’re well now.
Take Care
-
Like -
Helpful -
Hug
1 Reaction