Kidney and Ureter Tumors - Deciding About Cystectomy

By kathrynlvw

1 min read

Living with BC since 2014. I’ve had MANY cystoscopies, MANY rounds of BCG and Mitomyocin, and have another cystoscope scheduled on 10/29.

Thank God all tumors have been non-muscle invasive; HOWEVER, one appeared in my right kidney in 2019, resulting in the kidney and ureter being removed. Another appeared in my right ureter (where connecting to top of bladder) which resulted in the ureter being cut to remove tumor and ureter reattached. My kidney function is at 26% and I’m terrified of a tumor appearing there!

Looking for feedback about a cystectomy

I’m thinking of asking about a cystectomy in the near future. I’d really appreciate any feedback. My urological oncologist is wonderful!

Have you had a cystectomy (bladder removal)?

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suzan Member
Bless your heart! I was diagnosed in 2018 with T1 highly aggressive and have also had numerous TURBTs, numerous rounds of BCG and recently went through bladder chemo. My scope is in the morning. All of my cancer team want me to have my bladder removed but I just don’t know if I can go there..,
Crystal Hartranft Member
Hi <inline-mention user-id="2070784" username="kathrynlvw"/> I’m so sorry to hear that you’ve been living with BC for six years now. Facing such a difficult decision is never easy, I really admire you reaching out and asking for advice. It can be incredibly comforting having a community of people supporting you during times like these. If you’re feeling up to it, please give us an update after your scope on the 29th. Best of luck, -Crystal
emilych Member
Kathy, I really did not want to lose my bladder, and held out hope that the chemo would so eradicate the cancer, that there would be no need for it. But my surgeon, who is one of the top in the nation, knew if I wanted the best resolution, that the bladder, plus all female organs, needed to go. He did not give keeping my bladder an option. He was very kind, but told me if I wanted to live my best life forward, it had to go. As soon as I wrapped my mind around the necessity of that, I never looked back. Once you adjust to the ostomy, it is no big deal. It is just a fact of life, I feel good physically, my grandkids even get a little bit rough playing with me at times, now that I am healed completely, and it doesn’t bother me. I consider losing a kidney worse than losing your bladder, surgery wise. So consider losing that bladder to give yourself a better chance at life. Blessings and peace as you make your decision.
1. kathrynlvw Member
 My kidney was removed robotically. Was your cystectomy/hysterectomy done robotically or through open surgery. Also, what was your recovery time - in and out of hospital? Thanks so much!
steammocha Member
I just had mines done on 9/25/20, it was done robotically, and my hysterectomy two years ago. I was hospitalized for four days. I already had a urinary diversion done 28 yrs. ago. My primary started leaking, This is how I found out I have bladder cancer.
kathrynlvw Member
Good morning all! I had my scope done on 10/29 and THANK GOD my bladder was clear, ureter looked good and my kidney looked normal! This was after another round of BCG (6 doses) and taking elderberry religiously (don’t know if that was a factor but...........)! Only problem now is that my bladder must be the size of a walnut - have to go on the average of every two hours! Other than that I’m feeling more relaxed than I did last week at this time, BUT still wondering what comes next! I love having you all to vent to!
Linda Urbanski Member
Kathryn - I hope you are still doing well and wanted to check and see where things are. I hope that BCG or other treatments are successful. If the necessity for bladder removal does become the best option, please know that there are many many of us out here who lead full lives with a diversion. Please know that we are here for you to vent or to relieve some stress or otherwise. My best to you in your journey. Linda ( moderator, author, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)
kathrynlvw Member
Hi Linda! Just came back from having my cystoscope with uretoscopy (sp), dye was put up into ureter and kidney. Thank God all was clear! Dr. did a biopsy of a small, flat red spot but doesn’t think it is anything (he’s REALLY thorough). He did say my bladder is very small because of all the TURBTs, BCG, and Mitomyocin. My kidney and ureter are perfect!! I can breathe for another three months!! So glad I found this group, hope all is well with all of you!
1. Linda Urbanski Member
 Kathryn - that is great news. It is amazing how quickly our stress is reduced with some good news. I hope that your tests continue to be as perfect at these were. It does get easier !! Thank you for sharing your great news as it also lifts the spirits of others going through this journey. My very best to you. Linda ( moderator, author, <a href='https://bladdercancer.net' target='_blank'>Bladdercancer.net</a> team member)