Transitional Cell Carcinoma - Kidney & Urothelial (Bladder Cancer in Kidney)
I'm a 74 year-old, healthy and active woman. Well, like so many others, my story began in December 2018 with, first, microscopic, then visible blood in my urine (no pain). A CT scan revealed that I had "Transitional Cell Carcinoma" that manifested in my right kidney. I had never heard of this type of cancer before, so I did a lot of research. I visited numerous doctors and clinics to see if trying to save the kidney was feasible. All of them said, "No".
In January 2019, my urologist removed the kidney, the bladder cuff and several lymph nodes. At that time, the cancer was Stage 3, and the urologist believed he had removed all of it. Following surgery, I was also left with Stage 3 kidney disease - my left kidney is functioning in this low range.
Deciding my own way forward
My oncologist said I had to have chemo to be sure all the cancer was killed. For personal reasons, I am dead-set against chemo. I decided to go on a vegan, anti-cancer diet instead. For 18 months this approach seemed to work well, but I gradually slipped off the diet and, 2 years after the kidney was removed, the cancer popped up again in a lymph node still remaining near the site of the former right kidney.
Discovering the treatment for me
My new oncologist initially recommended chemo along with an FDA-approved immunotherapy drug. Again, I declined the chemo and decided on "pembrolizumab" (Keytruda). Initially, my insurance company fought us on the immunotherapy, but they approved this approach upon appeal.
I've now had two infusions of Keytruda (3 weeks apart). I didn't experience any side-effects so far. I feel very good - perhaps a little more tired than usual. The oncologist says I will have to continue to get Keytruda infusions every 3 weeks for the rest of my life, but he can give me no info about how long that life might be.
Embracing the future with optimism
I'm very grateful for the continued blessing of an active, virtually unaffected life. For someone with Stage 4 cancer and Stage 3 kidney disease, I'm doing exceptionally well. How long will my good health last? No one seems to know. I give thanks for each healthy day for now.
Did you know that May is Bladder Cancer Awareness Month?