On March 2, 2020, I went to the emergency room with what I was pretty sure was appendicitis. A CT scan confirmed the appendicitis but the docs also informed me that I had a 7.7 cm mass on my left kidney. Renal Cell Carcinoma (RCC).
I had a radical nephrectomy of my left kidney on March 22 (after sweating out whether COVID restrictions were going to cancel my surgery).
Post surgery, my urologist assured me that I was “cured,” that the tumor was fully encapsulated and had clear margins, and CT scans did not show any cancer anywhere else. Three months later, chest X rays were “suspicious for metastatic disease.” More CT scans confirmed 5 mets in my lungs (bilaterally) 1.7 cm or smaller, plus a 3.3 cm met in my mediastinal lymph node. Stage 4 RCC.
The first radiological oncologist I saw was emotional and told me I may have as few as two years to live (she meant well, but that was unhelpful). After seeing virtually every oncologist of note in my home town, through a family connection, I was able to get in to see Dr. Tannir at MDAnderson.
I have been participating in a clinical study there where I have received 4 immunotherapy infusions (Opdivo/Yervoy) plus a daily study pill called Sitravatinib. I am six months down the road and my body has proven to be “hyper sensitive” to the immunotherapy. All but two of my lung mets have disappeared entirely. The two that remain are 2 mm and 4 mm respectively. The lymph node met has shrunk by more than half and currently sits at 1.4ish cm. But the immunotherapy has done a number on my colon, so we are focused on trying to fix that because, left untreated it can be fatal.
The insurance company is giving us a hard time because their protocols don’t approve the intestine targeted infusion that I need for treatment of toxicity induced colitis. So for now, I am getting infusions and other medications which basically shut down my immune system entirely to protect my gut (not a good thing when that’s what’s shrinking the cancer). So, I’m left feeling more than a little frustrated.
Dr. Tannir is adamant that I should not get more immunotherapy infusions because of the damage already done. I have to trust him. I am 46 years old, with a wife and three wonderful kids to take care of. I am in the “prime” of what has so far been a successful and rewarding career in law.
Up until last year, I could honestly say that I am doing with my life exactly what I want to be doing with my life. I have been very lucky in that regard. This cancer diagnosis, has been an… inconvenience. LOL I am grateful that my body has thus far responded to the treatment. But, if I’m being totally honest, I’m greedy too. I just want this cancer to be gone.
My advice to others: Find an RCC specialist as soon as you can, if you can travel to MDAnderson for care, do it. My experience there with Dr. Tannir and his team is that they are second to none!
