"The large print giveth and the small print taketh away." -- Tom Waits
On my 96th day post-allogeneic transplant, my wife Aura and I wait in an examination room for the PET Scan results. This is the three-month check up -- my first PET since transplant. My nurse practitioner walks into the room and promptly announces that there is no change from my last PET Scan in July. I ask immediately for her to clarify if I'm still in remission, if this is a negative PET Scan. I want her to use those words. She says, "yes," with a funny look on her face.
And the small print says (excerpt from my PET report and entitled, "Impression"):
"Since July 3, 2013 (my pre-transplant PET scan), no substantial change in hypermetabolic focus within right aspect of partially calcified anterior mediastinal nodal mass, possibly viable disease; less likely thymic hyperplasia."
The small print says, "possibly viable disease."
It's remission with an *.
So is this good news? Is it bad news? I want to ascertain the implications of these asterisks, addendums and annotations. I'm feeling subtextual in my gray area.
Later in conversation with my doctor he confirms the small print. He says it's not completely negative, even though it's negative. He borrows some unofficial medical terminology from the world of myeloma treatment and says it could be described as a VGPR -- a Very Good Partial Remission. The summary being, you can't know for sure based on PET imaging. PET Scans are amazing, but still make asterisks like popcorn.
In a PET Scan, they inject radioactive sugar into your body that is attracted to abnormal cells (like my Hodgkin's) that light up on the final images. The problem is that other stuff can light up as well, like your liver. So if disease is minuscule, things get murky. Radiologists measure the sugar's attraction to these cells with standardized uptake values (SUVs). If you're under a certain SUV, then they consider it a negative PET, even if there is some uptake. But what is that certain SUV? It seems doctors have different ideas of what lurks at the bottom of the ocean. This is where asterisks breed. This is where patients get surprised, confused and maybe even hurt.
Previously on my blog, Hoechemo, I reported that my last two PET scans were negative. I just didn't go into details. That's what we were told. We were made aware that the scans did have minimal uptake in my anterior mediastinal mass, but the emphasis was very clear -- my scans were negative. Uptake was an afterthought.
And so this scan has uptake as well. My nurse practitioner says it's negative, but explains that there is still uptake. My doctor says he can't really call it negative -- or a complete remission -- because there is still uptake. He explains that there is no way to tell what that uptake is without a biopsy, and a biopsy in this location is basically out of the question.
These gray areas make me wish that doctors only spoke in terms of SUVs after PET scans. There are some seman-tics in the system. These annotations invite resignation. These footnotes resonate within me every day. They resonate in Aura everyday. They resonate with our families every day. These are the things we carry, and we must carry them to the next scan. And the next scan. And even when they stop the scans. So we stay the course. Do we have any other option? That mysterious and minimal uptake didn't seem to matter so much in preparation for transplant. All my doctors were giving me the impression that I now belonged in a class of Hodgkin's patients that would fair well with allogeneic transplant. Asterisks were on the periphery. But now I'm post-transplant, and I want them to be gone. I want it to be gone.
As my appointment wore on, my doctor went to great lengths to explain how allogeneic transplant works. He says that it's very common to see no change on the three-month PET. He says he's far more interested in the six-month PET on January 21. Prednisone has done the heavy lifting of keeping my Graft vs. Host Disease under control, but it's also limited the strength of my new immune system. Once I'm weaned off of Prednisone another phase of healing is allowed to take place. My new immune system can actually work to fight off any remaining disease.
Asterisks aside, no one on my medical team seems disappointed by the PET results. In the eyes of many, I am in remission. I will learn to accept this as good news. I'll continue to believe that I'm on the cusp of complete remission. In the meantime, I'll passionately play Whac-a-Mole with asterisks.
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