Hello everyone,
I was diagnosed with Stage 3 Follicular NHL, nodes everywhere and spleen. I only finished a year’s cancer treatment for aggressive breast cancer 3yrs previously. I’m symptomatic so had Rituximab over Xmas and NY. Repeat PET CT CMR, but symptoms the same. Was advised 6 monthly review with brief clinical examination and bloods. My questions are- why check bloods when these are usually normal for Lymphoma? I have no trust that a clinical exam adds anything, as I managed to grow a Stage 3 cancer whilst under Annual Cancer review for my breast cancer, and I found the new nodes myself. My second question is why I cannot have an annual PET CT? I appreciate that these are not without risk, and Stage 3 is already incurable, but moving to Stage 4 reduces 5yr survival, and I’d really want to know if my nodes are avid again to consider any treatment options?
Any help much appreciated,
Lizzie
Hi Dottiec and a warm welcome to this corner of the Community. I am Mike and I help out around our various Lymphoma groups.
For some context about me. I was officially diagnosed way back in 1999 at 44…… although I now realise I had most likely been living with with my rare (8 in a million) incurable but treatable type of Skin (Cutaneous) T-Cell Lymphoma (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. I eventually reached Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-cell lymphoma not otherwise specified (PTCL-NOS) (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
Your Follicular Lymphoma like my first type of NHL is seen as a life long incurable but treatable condition….. 25 years ago my Consultant told me to have a mindset that I had a chronic life condition.
Yes in all my 25 years I have never had a blood tests that pointed in any way towards my Lymphoma but blood tests can highlight changes in the body that may be connected to the Lymphoma effects…… but these bloods can find other issues that we can have regardless of our lymphoma diagnosis……. actually my regular appointments did highlight other medical challenges that had to be dealt with.
I have never had a PET scan so don’t know the challenges of having repeated scans……. But over my first 16 years I had a minimum of one CT with contrast a year but many more once I went into my various treatment between late 2013 to late 2015.
Due to me having to be treated for my 2 rare T-Cell NHLs at the same time my main treatment journey from late 2013 to late 2015 was rather complicated (See my story) but I am coming up to 10 years out from my last treatment, I turn 70 this year and I doing great.
