Transitional Cell Carcinoma - Kidney & Urothelial (Bladder Cancer in Kidney)

By chris-in-suncity

2 min read

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.

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kathrynlvw Member
Hi! I’m 78 years young and have been living with bladder cancer since 2014. I’ve had many TURBTs, many BCG and Mitomyocin treatments, had a radical nephrectomy in my right kidney, due to a > 1cm tumor, and had a left ureter resection due to a small tumor there (top part of bladder taken at same time to get a clear margin. My bladder is now VERY small! Thank God none of the tumors were muscle invasive and all treatments were/are maintenance. I had a clear cystoscope in October and two weeks ago had a clear uretoscopy (sp) which went up into my remaining kidney. Thank you God! I am scheduled for 3 weekly maintenance, 1/2dose BCG infusions beginning on 3/30. I’m really concerned that these are going to really irritate my bladder (which spasms) even more. I now get up 2-3 times per night! I’m so thankful that this is all I have to contend with, but I’m second guessing whether to roll the dice and see how my next 3 month cystoscope goes.
karensue Member
I also saw blood in my urine several times from 8/18 thru 12/18. My GP kept treating me for UTI's. Last time I saw it, I took it on myself to call a urologist. Once I told him the problems I was having, he said it didn't sound good. Next day he did a CT scan and it came back I had transitional cell carcinoma. Of course the first thing he asked was how long I smoked. I told him I have never smoked a cigarette in my life. Then he asked about working with chemical, which I haven't. Next question was have I ever been around second hand smoke and both of my parents were heavy smokers. Later doing some research, I found my dads death certificate and he died of the very same thing. I knew he had bladder cancer, but didn't have any clue to what kind of carcinoma he had. January 8, 2019 I had the left kidney removed along with the ureter. That's the tube that carries urine from the kidney to the bladder. Thank God the tumors were contained to the kidney and was low grade so I didn't have to have any chemo treatments unless it moved. He did say that I had a 20% chance of the cancer traveling to the bladder. Sure enough, 3 mos. after my kidney removal they discovered it in my bladder. I have been taking Gemcitabine for a nearly 2 years. I haven't had any recurring tumors or as my doctor refers to them as polyps in a year. I was able to go 3 mos. without treatment and this Monday I will be having another cystoscope and chemo treatment. If I'm clear, he will just watch me closely and hopefully no treatments. I know this will be ongoing, but thankful mine was contained, unlike my daddy's. Until I joined this group, I actually thought I was the only once going through this terrible disease. I have been corresponding with a fellow classmate that has been dealing with this for 13 years. A good prayer warrior and support group helps so much. 
1. karensue Member
 <inline-mention username="kathrynlvw" user-id="2070784"/> - I actually asked the nurse Thursday what the difference was between the BCG and Gemcitabine, the one I take. She said she wasn't for sure, but more people get the BCG. I did Google it and each site says different things. One article said if BCG doesn't respond, then they use Gemcitabine. Well, that isn't true in my situation because he has never tried the BCG, he started out with Gemcitabine. This is one thing I read: Gemcitabine is a relatively new anticancer drug that has shown activity against bladder cancer. They give it in an instillation. The only side effects is slight nausea the night after my instillation. I take a pill for nausea and it goes away within an hour. I don't blame you for having the kidney removed, not partial. They do a CT Scan once a year on my good kidney. It's doing good so far. Yes, this support group has been good for me. You just can't get enough prayers when you are going through your journey. 
2. kathrynlvw Member
 <inline-mention username="karensue" user-id="2070706"/>thanks so much for this info! I have my first maintenance BCG on 3/30 and am going to mention it to my Dr. I get 1/2 doses of the BCG as I tolerate it better than a full dose. Worst part is having to come home and “rotate” 15” on all four sides. Thoughts and prayers for continued good reports! 🥰
karensue Member
Chris, thanks for the info, but I never took Zantac. I knew they took Zantac off the market for this reason. Such a shame when a person takes something as simple as indigestion medication and it causes cancer. I'm almost sure mine is caused by second hand smoke since both of my parents were heavy smokers. They would have never smoked in the house if they had known they were harming their children. Thanks for sharing this with me.
karensue Member
Liz, I did think I was the only person going through this, other than my daddy. He died of this very thing 30 years ago, long before they had the treatments they have now. Once I got on this support group, I realized I'm not alone. I went to the doctor today for a cysto. It was clear, thank you Jesus. I will need a chemo treatment Thurs., but don't have to go back for 3 mos. I have a dear friend that I found out has been battling this for 13 years. It's just a terrible disease.