When do you give up on treatment?
Over the last 3+ years I've had 3 TURBT's, chemo, and 3 rounds of BCG, along with cystoscopies every 3 - 4 months. While some of the cystoscopies showed no new tumors, 2 did (hence the TURBT's). None of the tumors were muscle-invasive, all were small, but all were classified as high-grade.
At my biannual meeting with my oncologist recently (a week or so post-TURBT), I was utterly shocked to have him say he felt it was time to seriously consider a cystectomy. He feels the continued small tumors indicate treatments "aren't working", and that sooner or later one may develop that spreads into the lymphs or other organs. (metastasizes).
I've been feeling good about the way things have been going; the urologist catches any growths and addresses them quickly. This really caught me off guard. I then discussed it with my urologist, and he feels there is some merit to bladder removal, but knowing how averse I am to removal, says he's perfectly fine with continuing as we have been. He said from an oncologist's point of view, removal is the only "sure cure", but from a urology standpoint there are many potential complications from removal.
Have any of you had a similar experience? At what point did your Dr.'s recommend the cystectomy, after other treatments?
Hi
you have been through a lot. I am sure it was a shock to hear that news from your oncologist. I am glad you reached out to your urologist as well for another opinion. While I am hoping our members will respond directly to this forum, I found a bunch of stories and forum discussions that are similar to what you are going through. I hope this is helpful. Jill (Team Member) https://bladdercancer.net/forums/bladder-cancer-2, https://bladdercancer.net/living/radical-cystectomy-experience, https://bladdercancer.net/living/how-radical-cystectomy and https://bladdercancer.net/living/decision-radical-cystectomy Thanks for the links! I'm honestly shocked at how many people have gone directly to the radical cystectomy from an initial diagnosis. The story from "Lviz" where her husband had many complications from the surgery is absolutely shocking.
I was diagnosed with high grade carcinoma insitu in 2017. I had 4 rounds of BCG over the next 5 years, followed by radical cystectomy and creation of a neobladder in spring of 2022. During that surgery they discovered the cancer had spread into ureters. During the surgery they cut as far as they could on the ureters and still be able to make the connection to the neobladder. The final section removed on the right ureter still showed evidence of cancer.
The cancer then spread to my right kidney, which was removed in 2023. Prior to that surgery, I had a course of ddmvac to shrink/kill the tumor. During that surgery, they removed 7 lymph nodes for testing. They found cancer in one of the 7. I went on Immunotherapy.
Winter 2023 my PET scan showed the cancer had spread into the supraclavicular nodes, and I was diagnosed with stage 4.
The day before my diagnosis, the FDA approved a novel treatment using Enfortumab Vedotin in combination with Keytruda. A Chemo/Immunotherapy mode of treatment. In trials, 30% of all participants showed a complete response to treatment. I'm happy to say it has performed that way for me too! My last 2 PET scans showed no evidence of disease. I'm blessed that this treatment was approved when it was and that I am still alive.
However, my case is exactly why oncologists and urologists move quickly to remove the bladder. Maybe it was always in my ureters, maybe it wasn't. We don't know and the scans don't always show a mass that is easily detected. In hindsight, I may have benefitted from having and earlier removal of my bladder. I am one person who would definitely say they wished their bladder had been removed sooner.
I wish you all the best!thank you so much for sharing with us. Wow I am so glad to hear that this treatment was successful for you! I really hope you continue to feel well. Jill (Team Member)
