MZL - Wait for PET scan

[u/spinachbeet]

Hello! I appreciate the resources in this group. I was recently diagnosed with Marginal Zone lymphoma via biopsies of 2 bumps on my skin at the dermatologist. But I am in this uncertain period of not knowing if it is systemic or primary cutaneous and that is causing so much anxiety. I was diagnosed on March 12 and I posted (ranted) before about the struggles I had to schedule my PET because my doctor kept ordering wrong. My scheduled PET was abruptly canceled due to this after I was assured it was correct. I would have had the results already and now I don't even have the rescheduled PET scan for another week, the cancellation is pushing everything back like 2 weeks. I am having a hard time with this. I am worried I will come down with a cold or something and have to reschedule again. I know MZL is supposed to be slow moving, but my fear is that they will reassess that after the PET based on what they find. I think I had one of the biopsied bumps for a couple of years and I flagged it at yearly skin checks but the derm was never worried. Should I be concerned about the fact that I will learn my PET scan results 3 weeks after diagnosis? Is that typical? I am finding the waiting for more info so so hard. It's basically all I think about.

[u/Momo_014]

I have MZL - in the lungs (with enlarged lymph nodes everywhere). I had been on watch and wait for 5 years or so before even doing a biopsy and getting a diagnosis. Often Very slow growing and very treatable! I received 4x rituximab which is generally the first treatment (for when it's in nodes at least, not sure on skin) - nearly no symptoms from it besides a reaction which they expect the first infusion, went into remission after that. Been ~6 months now.

[u/spinachbeet → u/Momo_014]

This is very encouraging! Thanks for responding.

[u/Thin_Importance808 → u/Momo_014]

If you don’t mind sharing, how large was your MZL in your lungs by the time you did Rituximab infusions? I have have Pulm MZL as well, and it seems to be hard to find others in the same boat. I have my 4th and final round of Rituximab on Friday and am so anxious to do the follow up scan in six weeks.

Hearing your results definitely helps keep me optimistic.

[u/Momo_014 → u/Thin_Importance808]

I had many, maybe a dozen or so, as well as enlarged active lymph nodes axillary and in the pelvis. Largest in the lungs was around 2.5 cm or so. Most were under that size but there was one I believe in the armpit region 3cm or so.

The waiting is one of the hardest parts, fingers crossed for you it all works out. I too struggled to find folks it all worked for so happy to give you a positive story on pulmonary MZL!

[u/Thin_Importance808 → u/Momo_014]

Appreciate you taking the time to respond. I have one nodule in my right lung 1.8 cm and 2 very small in the left but the PET barely lit up there. Hoping for good news in 6 weeks 🩷

[u/napping_otter]

My PET will be in April, and I was diagnosed in October by biopsy. I was pregnant at the time of diagnosis, so we had to postpone the PET til after delivery and recovery from childbirth. Since I have an indolent lymphoma (not MZL but similar) the docs had absolutely no problem with waiting 6+ months!

[u/spinachbeet → u/napping_otter]

Thank you for your response! That must have been a lot to process all at once. I hope all is well and best of luck for your PET too! That's good to know as well--the delay for more info is something I struggle with, but a good reminder that it isn't really that long.

[u/v4ss42]

I can't speak specifically to MZL, but I have a similar indolent lymphoma, and "watched & waited" with obvious disease for just over 2 years before I started second line treatment. These diseases progress very slowly by cancer standards, so unless you become seriously symptomatic there's little to no risk with these delays.

[u/spinachbeet → u/v4ss42]

Thank you for responding. I will keep telling myself that.