Jan 15, 2013 - 10:00 pm
So I saw oncologist #2 yesterday. My CT scan prior to my nephrectomy had a questionable 1cm spot on my right femur. I had assumed it was nothing because my urologist/surgeon didn't menion it and hadn't planned to do anything special except, I suppose, have another look in 6 months.
Oncologist #1 last week thought we should check it out. He ordered a PET scan. At first he was planning to do another CT with contrast at the same time but he changed his mind when my creatnine came in at 1.8. He said something about if it turned out to be a met there's been success treating them with radiation. I hadn't even considered that I had anything outside my kidney, so I've been bummed since then. However, this fist oncologist calculated my recurrence probably at 13%, and that made me happy.
Oncologist #2 says that Oncologist #1 had a bad idea. That PET scans have a 50% false negatives on these types of tumors. Hmmm. I didn't enjoy hearing that. He said that I needed a bone scan and another CT, preferably with contrast to check this spot out. So I'm headed for a bone scan soon, but probably with a CT without contrast. He said we might be able to resect it if it's a met. I'm not sure he'd looked where it was, but it's not in a good location for surgery. It's right in the hip joint. I laughed and said, "Well, it's not in a good location for that. That might mean I'll have trouble walking." He just looked at me like, "Oh, well. You do what you have to do." and I was struck with how serious he was. I'm not sure he really means we'd do surgery on this spot at that location. Anyways, he's not surgeon, he's an internist. It is small, so maybe they could resect it.
Bothers me a bit regarding oncologist #1 decision on the PET scan. But I don't know my PET scans from my bone scans. I'm hoping these guys know this stuff.h
So I'm on pins and needles again wanting to find out about this spot on my femur. I need to know what it is before I can even consider the two clinical trials I'm looking at. If it's a met, I won't be eligible for the trials and will be looking at other scans, etc and other treatments I guess.
Maybe I'll get to the point sometime to not let my mood be determined by their numbers and their pessimism/optimism. But I'm not there at this point. His attitude really put me in a depressed and anxious state today. He also said Oncologist #1 grossly undercalculated my recurrence probability and that I'm closer to 30-40% maybe higher. He showed me the results of a study at UCLA that put it at 33%.
Anybody notice being more sensitive to alcohol or MSG or things like this after their nephrectomy? I had a little wine the other night, and it made me very dizzy. Of course it might be that I just haven't been drinking any alcohol for 2-3 months...