Here is the news from the oncology visit.

Here’s the scoop

My oncologist, Dr. Maymani explained some things about the pathology report. He described the cancer tendrils as creepy crawlies, which made their way into the renal vein and blood vessels, into some fatty tissue around the kidney and into the lymphatic system, though not in the lymphnodes.

Kidney cancer is a tricky thing. It doesn’t respond to chemo or radiation. It is most often treated with new clinical trial drugs, Immunotherapy. However, in my case, because of my JRA, which is an auto immune disease, I would not be accepted for any clinical trials. The drugs enhance the immune system, but mine is already defective, not to mention how it could make my arthritis even worse.

So, we are doing what he called surveillance. For the first year, I will have a CT scan and meet with him every three months. We’ll do the first one in two months, since my last scan was over six weeks ago. After the first year we’ll cut back to every six months. The thing is that there is a 50 percent chance that the cancer will come back within the next five years. And of that 50 percent, 20 percent of patients cannot be cured. Also, apparently, kidney cancer is one of a handful of cancers that can be aggravated by a defective auto immune system. The immune system is constantly working to fight off cancer, in any normal body. But for those of us with problematic immune systems, it may not be doing what it should.

The oncologist was absolutely wonderful! He spoke directly to me. He told me he’d read all about me and the process so far, but he wanted to hear about it from me. He also knew what JRA is and wanted to hear about that from me. He was straightforward, honest and explained everything beautifully and clearly. He asked me multiple times, how I felt about what we were discussing, what my thoughts were, did I have any questions. He answered all my questions. He answered things the damn urologist would never give me a straight answer about. He checked my incision, something else the urologist never did. He asked me how things are feeling since the surgery and if urinating seems to be doing okay since surgery. He also had blood drawn so he can monitor my kidney and liver function. I asked about diet and he said no special diet. People with kidney disease need to eat a low protein diet, but not people with kidney cancer. He just recommended watching my blood pressure—it was sky high today, though that is unusual for me—and watch my weight so I don’t develop diabetes. I’m not happy about this wait and see thing. I feel like I have a sword over my head and I’m just waiting for it to come down or to be pulled away. I have a 50 percent of having the cancer come back, and then only a 30 percent chance of surviving if it does. I am not usually one who expects a wait and see attitude medically. Joints damaged by JRA, let’s replace. JRA flares up, let’s try new meds. There’s always been something to do. But, I feel confident that I am in good hands and my doctor will do all he can to get me through this, however it turns out.