Andrew was admitted yesterday to AMC for round 4, B-cycle. We saw Dr. E for our regular early appt., and she had the good news that the pathology was finally back. The hematology group had sent the path out for deeper testing (FISH gene test). The FISH had also been done in Kingston and Westchester, so we weren't expecting any kind of different news -- the biopsied node had some of the markers for Mantle Cell Lymphoma (MCL) but always tested negative on the FISH for the chromosome translocation that is usually present in MCL. Our previous doctors had been treating the cancer as if it were MCL anyway though, because it followed typical patterns, had some of the markers, and was very aggressive. I've learned that lymphomas rarely fit into a little box of "this one" or "that one" -- there can be all sorts of minute differences in individuals that make pathology very difficult to read and interpret. It's not anywhere near the exact science that we would like to believe it to be. And cancers do all sorts of strange things and mutate in unexpected ways, which is why, I suppose it's difficult to eradicate them.
But the AMC pathologists went a little farther and examined the pathology of Andrew's gall bladder as well. (If you remember back to Thanksgiving, Andrew's gall bladder was found to be infected, and was removed, delaying chemo and causing us all lots of stress!). As far as we know the gall bladder pathology had never been examined in relation to the lymphoma -- we had been told that it wasn't necessarily related to the lymphoma, other than the cancer had probably made an existing irritation worse. But I never felt completely comfortable with that, because reading I had done showed frequent GI tract involvement in cases of MCL -- it's one of the "patterns". So I just assumed that it was MCL -- the doctors were treating it as such, and it followed the patterns. The big problem with MCL is that it has a habit of returning after treatment, so we felt fairly certain that we would be fighting this all our lives.
But the AMC pathologists found something different. When they examined the gall bladder tissue, they found evidence of malignancies that pointed to a different kind of lymphoma altogether. The pathologists believe that Andrew's lymphoma actually began in the gall bladder, and may have been there for many, many years as a slow growing "indolent" MALT (mucosa- associated lymphoid tissue) lymphoma. MALT lymphomas most commonly begin in the stomach, but can begin in other GI organs as well, and are often caused by bacteria. The lymphoma transformed over time, and became very aggressive, spreading throughout his lymphatic system in the few months before he was diagnosed. By the time the gall bladder was removed it was completely infected -- indeed, the surgeon pronounced it "juicy"! Dr. E. said the FISH test came back negative for a third time, and that they believe it is not Mantle Cell, but a transformed lymphoma -- MALT to Large B Cell. Already, some reading I've done confirms that transformed MALT is very difficult to distinguish from MCL and DLBC. The good news about this diagnosis is that these types of lymphomas have an approximately 85-95% cure rate. Dr. E. said the hematology team recommends the same treatment that he's on -- finish the 8 rounds of R hyper-CVAD, and then he should be good to go -- no stem cell transplant needed, just follow up scans.
Obviously, we were thrilled to hear this. It all just makes so much sense, like pieces of a puzzle falling into place. The Westchester pathologists had also theorized that it started as a slow growing lymphoma, but this was the first we heard of the gall bladder connection. In their defense, Andrew was very sick when he arrived, and there wasn't time to do a lot of questioning -- they had to make their best guess and begin aggressive treatment immediately. So ironically, it seems that getting kicked out of Westchester by our insurance company may have been a blessing! We've gotten a fuller picture of the disease, and it may have prevented Andrew from going through an unnecessary SCT. At the very least, if it is some sort of sneaky MCL after all, he's still getting the appropriate treatment, and a SCT is an available option if there's a recurrence.
But interesting, isn't it, that it took three different teams of pathologists and hematologists (including a Sloan consult ), working off each other's information to put all the pieces together? Cancer is so unbelievably tricky.
A huge shout out to the 4th floor nursing staff at AMC -- they are taking such incredible care of Andrew, and are on top of everything!!
xoxo
L
Finally, some good news!!!
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