After being diagnosed with stage 3A follicular lymphoma in January 2026 my provider is changing. I had my first PET scan in December and my second three months later in March 2026;there doesn’t seem to be any changes to the seven spots of disease. My new doctor apparently follows labwork values and doesn’t do scans as often as my first oncologist. Since this is all new to me, my original oncologist had implied if I had normal scans then I would get an annual PET scan, but before leaving said I’d… read more
@A MyLymphomaTeam Member
Dawn, smart doctor!!, your new provider. I’ve never had a PET scan or a CT scan. Of course, I agree with him 100% - I am extremely frightened of having a radioactive ☢️ liquid injected into my poor beautiful little body. Ever thought of having an MRI - no radiation ☢️, if you must have something?
I only have a full blood count once a year and a full physical examination 🧐 of my SKIN as I had a diagnosis of Primary Cutaneous (confined to SKIN) Marginal Zone B-Cell extra nodal lymphoma NHL. I had 1 surgery in 9/2022. No margins left behind. No other treatment. I have been in complete remission since 9/2022. I do thank God on my hands and knees every single day for this. I do not know of 1 single other person with my sub-type anywhere. My doctors and medical literature say it’s 1 in 1 million people. Why me?
Take care
Stay strong 💪
Scottie 🩵
Hi Dawn- I had chemo last year forNH FOLLICULAR LYMPHOMA-stage 3 (1-2)a scan in November showed some lympth nodes remained but under 0.5cm.
Targeted Therapy started in Dec 2025 and will continue until Nov 2027.
My Oncologist has told me my next scan would not be until after last therapy end of next year.( unless symptoms or blood work required it)
He further said that CT Scans are hard on renal system and only used in conditions that demand it- not earlier if at all possible
It's completely understandable to feel uncertain, especially with a provider change on top of an already new diagnosis. The good news is that stable scans and normal labs are genuinely encouraging signs.
Follicular lymphoma is often very slow-growing, and watch and wait is a well-established approach when there are no Show Full Answer
My new provider apparently does not order PET scans frequently. The Team nurse practitioner told me the new oncologist just follows what my bloodwork labs indicate. I have nothing to compare to; my first oncologist said I’d have another PET scan in six months and the new doctor isn’t planning to follow that protocol. I’m on watch and wait at this time. Is that similar to others who are watching and waiting?
@A MyLymphomaTeam Member
Very valuable information, Graeme, for everyone on this wonderful site!!
Thank you so much