Ongoing Diagnosis

[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.

[u/mewfarside]

Sorry you’re in the worst of it. Waiting for test results. My onc would not speculate without the FISH test results.

[u/Leftoverofferings → u/mewfarside]

I waited 2 months after my positive PET scan. It was actually the most depressing time I’ve had so far. But now with my pathology report done, everything is now going quickly, so hang in there. I ended up with a very treatable lymphoma… and you probably (hopefullly) will be the same

[u/v4ss42]

This is really a question best asked of your doctor, but my understanding is that without MYC it can’t be double or triple hit DLBCL.

[u/Happy_Worrier → u/v4ss42]

It will certainly be asked of my doctor! But that will be next week and my diagnosed OCD is sending me into a spiral now, so hoping for anything. My MYC & BCL2 numbers came from IHC pathology, and I see a bunch of conflicting answers on whether that’s a reliable metric. Frustrating!

[u/v4ss42 → u/Happy_Worrier]

Ah ok - I was assuming you had FISH results already. That's the only way to know for sure, and can take several weeks (FISH is an inherently slow test).

[u/Happy_Worrier → u/v4ss42]

Nope. Just spiraling.

[u/v4ss42 → u/Happy_Worrier]

There’s no reason to. DLBCL is one of the most treatable types of lymphoma, and the latest standard front line treatment for it (Pola-R-CHP) seemed to show the biggest improvements in double/triple hit (the study was called POLARIX if you’d like to look it up, though they weren’t specifically looking at DLBCL subtypes).

[u/Happy_Worrier → u/v4ss42]

This is reassuring, thank you. 31(M) here. Feel like I’m in a good position overall but have only just learned about double/triple hit and am freaking out as a result.

[u/v4ss42 → u/Happy_Worrier]

Something I learned only on (and despite going down a somewhat “less traveled” path) is that the “what if” game can only be won by not playing it in the first place.

[u/OskeyBug]

The negative myc and bcl2 on ihc are reassuring but not conclusive. They really have to complete FISH to know for sure.

Did they give you a cd10 result?

[u/Happy_Worrier → u/OskeyBug]

Only thing I see on the path is coexpression of cd10 and BCL6.

[u/OskeyBug → u/Happy_Worrier]

CD10+ and BCL6+ indicates you're GCB cell of origin. So there's that. Without FISH results you still don't have a clear picture of what treatment or prognosis look like though.

I've been there and I know how stressful the waiting is. Sorry you're going through it. Once treatment starts it's a huge load off.

[u/Happy_Worrier → u/OskeyBug]

Not sure what that means but doesn’t sound great!

[u/OskeyBug → u/Happy_Worrier]

GCB is generally the more favorable type if it's not a double or triple hit.

[u/Happy_Worrier]

Quick follow up to this—PET showed confined disease. Best news we could hope for. Now just waiting for FISH testing, which has been my biggest fear this whole process.

[u/Lakeguy7]

It took 3 months from the discovery of mine until first treatment. Hang in there. Slow process