u/Happy_Worrier

Am going through work up now and this is the picture:

- No symptoms aside from 4 cm neck mass (removed for biopsy, DLBCL diagnosis involving same-side tonsil, opposite side tonsil clean).

- No bone marrow involvement

- Normal full blood work up, CBC + LDH and some other more specific markers.

- Normal brain MRI

- Waiting for: PET results and FISH test.

The wait is maddening. More infuriating still is everyone telling me that no symptoms, normal blood work, no bone marrow involvement, normal MRI doesn’t mean anything, it can still be stage IV double/triple hit.

My path was negative for BCL2 and MYC on the upper end of normal, Ki-67 95%. Given all this, is there any way to predict whether double/triple hit is likely or unlikely? I guess I’m just driving myself crazy because my picture looks decent to me so far, but no one is willing to say that. Also happy for someone to tell me that worst case scenario is still manageable! In all, agree with everyone who told me that the diagnostic process is a unique torture. Thanks, all.

Hello, all. Have been lurking for a while through my diagnostic process but just joined now that diagnosis is partially in: Diffuse Large B Cell NHL (forgive any errors in nomenclature).

I have scans and tests lined up for the rest of this week. It is a bit of a relief to have something like a diagnosis, but staging/extent/number of “hits” are all still unknown, which is terrifying. To this day, I’ve yet to feel a symptom besides a painless inflamed lymph node just under my jaw (fully excised for biopsy).

But Drs. are saying that basically doesn’t matter, there’s no real correlation to staging or prognosis. Does anyone have a similar story or any encouragement to maintain sanity while waiting for other shoe to drop? I think I’m particularly worried about the potential for a double or triple hit. Still feels surreal as I feel entirely normal, and I am diagnosed OCD so really truly can’t put it out of my mind.

Anything helps. Much appreciated.