The PET scan results came back with nothing conclusive AGAIN!!! Boy, am I getting pissed off at this situation. We had a video visit with the doctor and come to find out she isn’t even the doctor who will be prescribing the chemo, she’s doing the diagnostic. I am really upset as this seems as if he just getting the run-around. She wants to do another biopsy in a different area. I brought up that the surgeon had said that the cell samples would more than likely be the same in the other masses. So WTF?? But we’ll have him do it but I think I’m going to find out where there is a patient advocate at UCD and make some sort of complaint about this whole process. I joined the Peritoneal Facebook group and a number of people said, they never got the source of the cancer( which is what she is trying to do without any luck so far.) and that their doctors started chemo based on their best judgment. So for instance one woman said although the source wasn’t defined it was near the uterus and so chemo was based on that.
I’ll have to think about what next step we should explore. Maybe a second opinion or getting back in touch with his transplant doctor for advice. We are definitely at their mercy right now and every week without chemo is …well you know.
Right now, I just need time to review the scan results and then figure out a plan. But I think I do want someone to be accountable and get him to the right oncologist.
Tahoe Girl 
Fucking cancer … you got that right. When they first found mine, it was called Cancer of Unknown Primary (CUP). Then they called it Primary Peritoneal Cancer (PPC). As I said earlier, mine was ultimately connected to ovarian. Although I just had regular chemo, the big thing was heated intraperitoneal chemo. It was supposed to be the gold standard, but I don’t know anymore. Mine was a long time ago.
Hi Donna, yeah it sucks right now and we’re not sure what to do. They still do the HIPEC but only at certain hospitals and I’m not sure about UCD. Someone the facebook page did theirs down at City of Hope. It’s depressing for sure. I think our first line of attack is to find out from his NP( from his transplant team) who is or can be his treating oncologist. Believe me I was pretty shocked when I finally asked was she going to be treating physician. I just assumed that was the case.
Does your area have any type of patient advocate organization? I wonder if a third party could light a fire under the doctor’s feet.
I think that’s my next step with UCD. I’m quite sure they have a patient advocate, I just have to find out how to contact them.