u/sdb16

Stage IV MZL, widespread disease.

I feel a weight on my chest that I can’t push off. My husband at 31 has Stage IV MZL with activity in his abdominal cavity, suspected gastric mucosal involvement, pelvis, ribs, spine.

I feel as though a dark cloud has just moved over us and snuffed out all of the light.

We need positivity and stories of hope. I’m not sure if my pregnancy hormones are making this feel so much heavier than it is but I almost feel paralyzed by what we learned after speaking with the oncologist.

Please share your happy stories. As a caregiver, I am desperate for them.

As always, thank you everyone for the support. This is new and scary and I want to know he will be okay.

I posted last week with my husbands initial diagnosis of NHL while waiting for a differential to confirm either follicular or marginal zone. It sounds like our lymphoma specialist is calling this MZL at this point. PET scan was yesterday and it appears that something was posted to my husbands MyChart, we’re assuming it’s the read of the scan.

We tentatively have an appointment with the lymphoma specialist on Monday late afternoon or Tuesday mid day depending on results.

My question is this: should we open them now knowing we won’t be able to talk to anyone about interpretation of the results until our appointment? Or should we wait until then? The curiosity to know is challenging because this waiting game has been so tortuous with the anxieties, heaviness, confusion, etc. I just can’t decide what would be better for us at this point.

My husband (31M) received a biopsy diagnosis late last night for Non-Hodgkin B-Cell Lymphoma with a differential between Follicular and Marginal Zone sub-types. FISH testing is currently pending, we are unsure on timing for results for this. We are not new to medical complexities, my husband has been living with Crohn's Disease since he was around 4 and since 2012 has been in remission from his Crohn's.

Around January of 2025 he experienced a swollen neck lymph node which was biopsied and came back inconclusive for anything and he was then monitored and symptoms resolved on their own and the lymph node swelling went away. In February of 2026, he started experiencing some symptoms that were hard to correlate with anything. He had difficulty urinating which was examined by a urologist and nothing abnormal was seen on scope, he then developed eyelid swelling that was unresponsive to medication, and then had a bout of pancreatitis in early May which resulted in a 3 day admission.

During that admission, they did scans and lots of blood work. On his scans, swollen lymph nodes were seen and a biopsy was performed. His symptoms improved and blood work improved and was discharged before any biopsy results came back. Those initial results also came back inconclusive for anything diagnosable. The initial biopsy results could have been an inflammatory process but did not show any outwardly diagnosable lymphoma. His oncologist wanted to re-biopsy him which was done a week ago.

Those results from the second biopsy came back last night as stated in the first paragraph. To make our situation more complex, I (32F) am currently 17 weeks pregnant with our first child. We feel completely overwhelmed with this new diagnosis of NHL while also navigating a first pregnancy. We are meeting with his oncologist today and are hoping to get more information to move forward with a plan for him.

At this point, as his caregiver, I am looking for hope, resources, success stories, treatments, guidance as to how to navigate this situation while also supporting myself through pregnancy and beyond. Any and all information, guidance, etc is so welcomed and appreciated! We know there are so many communities out there to help us but I figured this was a great place to start as well.

Thank you all in advance, while we hate to be in this situation, we know there are so many people out there who can help us.

Edit: thank you all so much for telling your stories. They’ve given us such a helpful positive outlook after seeing such scary words on the biopsy results. We’re hopeful to have a more definite plan after the PET scan next week and can move forward towards kicking this thing in the a**. For now, we just continue to live our lives as normally as we can until we have a reason not to. Thank you thank you thank you!

My husband and I were both raised Catholic but have fallen away from our faith in our 20s. Now that we have a young family, we are wanting to join a parish for our children.

We live in NKY and are willing to travel to find a parish that fits our needs. We are wanting to join a parish with young families, relevant homilies, that is connected to contemporary social and political issues, and that has a warm and welcoming community environment.

We both feel out of our element and intimidated with trying to find a parish since it’s been so long since we’ve been practicing in our faith.

Any help is greatly appreciated! I know Cincinnati and NKY is a great place to be a Catholic and has such a large community presence. Thank you in advance for any advice and recommendations!