Here we are in limboland

I saw my radiation oncologist this morning. I had my 3rd PET/CT scan on Monday (the first one last Dec. diagnosed my endometrial cancer recurrence, the 2nd this past July that showed improvement but that the tumor was still there). So today the dr. walks in all subdued and somber and I'm thinking "Oh shit". To cut to the chase, the tumor size has not grown, but the metabolic activity has increased (in Dec. it was 10 something, in July it was 4 something and now it's 7 something- I think it should be less than 2 or 3). The CT part of my "PetCat" shows the size and location of the tumor, the PET part shows the metabolic activity which is the cancer activity. Technically it can show other types of metabolic activity, like inflammation, which my dr. did bring up. He said he's a bit perplexed by the fact that the activity increased but the size did not. But who knows. Anyway, the good news is that nothing else in my body lit up so there is no other cancer anywhere else (this is of course not a 100% accurate test, but it's a pretty good one for early indication of disease).

He also explained that this tumor was close to the spine which presented a problem. He said he couldn't give me as much radiation as he would have liked because of this. He said that the problem with the few treatments he could think of doing was that I could end up paralyzed. The other issue is the kidney aorta, it's also close to that. It's so damn frustrating because here I have an isolated disease that if it were in a different place they could just have cut it out (often with cancer mets they don't do surgery because there's cancer in too many places, but mine is just one tumor). He mentioned proton beam radiation but said that no one was doing it yet for my particular situation (not sure what that means exactly). The other dr. mentioned gamma knife but he said that the location near the spine could present a problem with that. This really is frustrating.

So, where does that leave me. The rad onc wants me to repeat the PET/CT in 2 months and go back to see him. Meanwhile he wants me to get other opinions, see my gyn onc for one (I have an appt. for 12/21 that was already scheduled), but also he thought it was a good time for 2nd opinions. He said he was not thrilled with Memorial these days (Sloan Kettering- he is speaking for gyn cancers not other cancers) and I said Johns Hopkins and he emphatically said no. His suggestion was Washington University in St. Louis. He said they were doing the most ground breaking gyn oncology work right now. So we'll look into that and I think I may also want to go back to the med onc at Fox Chase and also make some appts. with some other gyn oncs in the area since I'm not so thrilled with mine (I called him Mr. Sunshine in front of my rad onc which gave him a chuckle).

I wish it were better news, but it's not horrible news. I pretty much realized this July when the tumor hadn't gone away that it was probably not going to be gone now. I had hoped for stability and I kind of half got that. A. asked if another ct-guided biopsy might be in order and he wanted my gyn onc (or other opinions) to decide on that.

So here we are in limboland. Better get used to it. It could have been worse. I'm trying not to get ahead of myself. One step at a time. The thought of chemo makes me sick. Hopefully we can find something better to do. At least we have some time to think. All the other times I've gone into treatment it's been in crisis mode and I haven't had the luxury of having some time to get additional opinions.