Back before Thanksgiving, doctors discovered a tumor in my wife’s bladder. The tumor was removed in December and biopsied. On Christmas Eve, the biopsy report came back as Melanoma.
A visit with the Oncologist in January suggested that the bladder, uterus, part of the vagina and intestines should be removed. The bladder would then be replaced with an external bag. Needless to say, neither of us were keen on that suggestion, so we decided to get a second opinion.
Since the first biopsy went to two different labs and took almost a month, we suspected that maybe something wasn’t quite right. So, we had the biopsy sent to Indiana University. Sure enough, when we got the lab results back, it was not Melanoma. Instead, it was Perivascular Epithelioid Cells or PEComa.
PEComa was first identified back in 1991. Since then, there have been only about 100 documented cases of this condition and only about a half dozen involving the bladder. It is generally not considered malignant but because there are so few cases, the doctors don’t really know for sure. And while it is probably more prevalent, it is often just misdiagnosed as melanoma.
Our problem at the present is how to treat this condition. Our Oncologist said that he has never seen a case like this before now. And, even though it is new to him, he would still remove the bladder and associated parts. (We refer to him as Dr. Hackenslash. He apparently subscribes to the philosophy of “if in doubt, take it out.”)
What we have been able to determine from our reading is that no one really seems to know how to treat it. Some doctors suggest radiation. Some, chemo. While others suggest leaving it alone. And, of course there’s “take it all out.”
So, at this point in time, we are not inclined to do anything radical. After all, before they got the new lab results, they were going to schedule my wife for surgery this month.
How quickly things can change. If we had listened to our Oncologist, my wife would be sporting a bag right now.
Never trust a doctor with your life.