It took a while for my doctor to come to a conclusion on what my post-round-four scans actually said.
My CT scan was straight-forward: my tumor shrank from 6×3 cm to 6×2 cm (and apparently I have a non-cancer-related problem with my lower spine…good to know for solving later).
However, she knew that I was hoping that the CT scan would say “what tumor?” so she sat down next to me on the examining table and…
“It shrank 33%, down to 6×2.” I immediately tear up.
“This is good news, I promise. Remember when it was 12×6 and we did the biopsy and 80% of the sample was necrotic [dead]?” Sniffle…nod.
“So my guess is that what we have left is mostly if not completely all dead tissue.” I lift my head; my mood lifting with it.
“Um, gross. What do we do with a huge mass of dead tissue?”
“Well, first we get a PET scan, and with this result your insurance company will definitely approve it, to make sure that it’s all dead, and then your body just breaks it down on its own.”
“So I might not have to do eight rounds? I might be done with six?” Hope, as ever, springs eternal.
“Let’s wait to see what the PET says.”
I had the PET in the middle of getting chemo for Round Five. The report read: “The F-18 FDG PET/CT study demonstrates an anterior mediastinal mass with only mildly increased metabolic activity, compared to the surrounding normal soft tissues. The mass is smaller and significantly less metabolically active, when compared to the 8/17/2012 PET/CT, consistent with interval therapy. The study continues to demonstrate mild increased activity throughout the visualized bony skeleton, probably related to recent chemotherapy, but less prominent than on the prior study. There is again no abnormal metabolic activity in the soft tissues outside the chest to suggest other sites of active lymphoma.”
“We’re not sure what we’re seeing. I need to talk to the radiologist.”
Text message later: “Spoke to rad MD. SUV is 2.5 and it is barely distinguishable from the surrounding tissues. I think we will call this a CR! I will consult, but we may be able to settle on 6.”
CR: complete resolution/remission
6: six rounds of chemo instead of eight
SUV: a measure of metabolic activity. Cancer, thymic rebound, brown fat, inflammation etc. can all show up on a PET scan. Different cancers show up at different SUVs, so there’s no one value that makes people nervous, however anything above 2.5 is noteworthy. For example, my tumor at diagnosis had an SUV of 11.
Emails go out to our fabulous team of second opinions, and I make an outpatient appointment with the head of lymphoma at Northwestern (my doctor was one of his fellows once upon a time, and she was already consulting him on my case).
So, Tuesday rolls around (7 days after I had the PET), and I have appointments with both doctors.
“R-EPOCH is designed so that you have two rounds of chemo after we’ve achieved CR. We just don’t know if this is, in fact, CR. The contrast value is 2.5, which is barely active. I’ll bring your PET to conference on Friday, but between me, your doctor, and the radiologist, we think we’ve achieved CR, and the residual activity is probably inflammation.”
“PETs are extremely sensitive. If you had a chest cold your lungs would light up. Your tumor has been under attack for three months, and this PET was taken while you were undergoing chemo; it is absolutely inflamed, which is different from being cancerous, but it looks the same on the PET.”
“So we can break out the champagne?” (Insert irony here; I’ve completely lost my taste for alcohol.)
“Not yet. But we don’t think that you need to do eight rounds. Let’s finish your treatment at six, wait 4-6 weeks before your next scan to give your body time to process the chemotherapy and your tumor to calm down, and then see what we’re dealing with.”
“Hopefully it won’t light up at all, but if it does, we’ll get a thoracic surgeon to do a biopsy and move on from there.”
So I may have a honking huge dead mass of cells in my chest, or I may have some sneaky cancer still in there. Hopefully Rounds Five and Six will clean up anything remaining, but I’m tentatively SUPER DUPER EXCITED!!!!!!!