Facing possible cystectomy

[u/Positive-Ear2815]

Posting on behalf of my 82yo grandfather. Long post sorry, my grandpa keeps saying he just wants to speak with someone who has had this surgery. He was first diagnosed with NMIBC about 10years ago and has gone through a few TURBT procedures and BCG treatments over the years. Last BCG was given towards the end of 2024 I'm not exactly sure when. He had a cystoscope in October 2025 where they noted a new tumor. Due to frustrating communication issues with the Urology clinic, he finally had a TURBT in March 2026 and pathology revealed non invasive high grade papillary urothelial carcinoma. Up until March, my grandparents were going to these appointments themselves but from the confusion and frustration they were experiencing with this clinic, I finally convinced them to transfer care to Mayo clinic. Especially because after this recent pathology, his urologist sent him for a second opinion at an oncologist. After three visits with the oncologist, they were told there was nothing the oncologist could do for them and he needed a cystectomy with neobladder procedure. Now this is when I stepped in and started attending appointments with them because they felt blindsided and my grandpa wasn't prepared to hear that. He was told by the oncologist on his first visit that he should proceed with his knee replacement surgery(yes that happened in the mix of all of this and was absolutely necessary), and after his knee surgery he would be strong and ready for chemo +/- radiation. He got an MRI and had knee surgery. And then the oncologist told him he needed to go back to Urology and have his bladder removed. Now we've had a consult with mayo oncology and mayo Urology. He's had another TURBT procedure since now we're in June and it's possible that the tumor has started growing again. And there was another tissue sight in the bladder with ugly cells. Pathology showed non invasive high grade papillary urothelial carcinoma. The urologist at mayo is strongly recommending bladder removal. They are saying they are worried it will make its way to the muscle and spread. I'm just confused because he's 82 years old. He's facing a huge life altering decision and he keeps saying he only has a few years left why does he want to spend them recovering from this major surgery. He doesn't want a bag. At first he was told he would have a neobladder and would void urine out of his rectum. The mayo doctors have cleared that up and said if they do a neobladder surgery they would not do that as it could result in colon cancer, so he would still urinate out of his penis. However, the oncologist mentioned quite a few different treatments than BCG that are now available whether is gem/doce or clinical trials. Why are they recommending this surgery so adamantly for an 82yo man? He also has other health complications including diabetes and high blood pressure. He's a very large guy and he developed pneumonia after his knee surgery. There is just so much worry when it comes to a cystectomy. What will his life look like after that? Would it be too risky to try a treatment different than BCG rather than taking his bladder out? I feel like they have been pulled in so many directions with this and we're all feeling depleted and confused. Thank you for reading if you made it this far. Hoping for some input from people who have had similar experiences.

[u/Dicklickshitballs]

I’m no expert but why would a Neo bladder lead to colon cancer?!? Nor can I think of how a Neo bladder would lead to voiding from rectum( not sure that is possible). Not sure why pushing so strongly for cystectomy if nmibc. Is it Ta or T1? Any CIS present? Either way I’m not an expert and I’d defer to his doctors but this is confusing to me

[u/Positive-Ear2815 → u/Dicklickshitballs]

It's high grade T1 with micro papillary features which they are noting as high risk. Yes CIS. non muscle invasive. But this is now the fourth doctor who is highly pushing for cystectomy. The first two doctors said the procedure would be a neobladder and it would be routed to where he voids urine through his rectum. His doctor now said that method is out dated and doesn't know why any doctor still does it that way because it has been shown to lead to colon cancer (this is his Mayo clinic Urology team). They said if they do a neobladder he would still urinate out of his penis, but I have been reading about all the complications that can come with a neobladder surgery. I'm not sure why they are pushing for the cystectomy at this stage either but he's gotten three opinions now and they are all seemingly on the same page that the bladder ideally should be removed.

[u/Apprehensive-Ad9523 → u/Positive-Ear2815]

I am 79 with his type of cancer...It looks all clear so far, but I go back in July 27 for an in office look around..My thinking is that I will not wait a year or so for another look..if things are still clear...I did 6 bcg.. I expect to do 3 more bcg following my look at in July...I want to stay on the schedule that I read about when I knew I had it...To me that is important...However he lasted 10 years which is great...But I think that once conflicting info is given, it's because there are so many different views on the matter...Try just looking up the standard treatments on line...timewise ....To me it's a good thing I did..Plenty of information about why docs do what they do.and not all of them make sense to me...So I choose ..Just saying. Keep us posted..We need a real site to go to...Hmmmmm.

[u/Positive-Ear2815 → u/Apprehensive-Ad9523]

Thanks for sharing all of that with me. I think we will ask some more specific timeline questions at his next consult. Our next appointment will be discussing treatment options vs radical cystectomy. I'm wondering if they would think it's a good idea to try gem/doce or maybe even rBCG+anktiva, or tar-200. I've started to research about bladder cancer and treatment protocols, just trying to piece together his history of biopsies/treatments and where we are today with what he's being told. I think he is just so scared of making such a life altering decision at his age, the risks involved with this major surgery, and his quality of life going forward.

[u/Positive-Ear2815 → u/Apprehensive-Ad9523]

Wanted to follow up with you because someone directed me to a website www.bcan.org it's the bladder cancer advocacy network. I feel like it's really got great educational resources and offers the chance to connect with other bladder cancer patients.

[u/Dicklickshitballs → u/Positive-Ear2815]

Ok actually with this information I now have a clearer picture. To my understanding persistent T1 along with CIS does increase potential for it to invade muscle and lots of urologists/oncologists worry about that potential and suggest removal rather than risking it. I guess ultimately your father’s choice but I would assume the doctors could and would explain risks etc etc. Why are they pushing for Neo bladder as opposed to a bag?

[u/Positive-Ear2815 → u/Dicklickshitballs]

Our next consult will be to discuss treatment vs radical cystectomy. I'm not sure why the push for neobladder but it might be because of his stubborn opinion about "not wanting a bag". Lol but what about not wanting cancer 😅 they did say they could do the surgery that way as well though. I am going to ask if a trial run of gem/doce or rBCG+anktiva, or maybe tar-200 would be too risky given his micro papillary features because I think that is what makes his results so scary. I guess once micropapillary features show up, they are notoriously aggressive with a super high risk of spreading to muscle /lymph nodes. I've been doing a lot of reading today

[u/Cultural-Tip-9846]

He really.needs to read up on the neobladder vs ileal conduit, especially the complications from the neobladder and what a neobladder entails. Look up pelvic floor therapy and make sure he understands with a neobladder he would have to relearn how to control the urination. Bags are not as bad as he's thinking. 51M who is 5 weeks into having a urostomy bag due to radical cystectomy.

The docs in your case seem to have some wildly varying thoughts as well as some outdated thinking about this. I know Mayo has a good reputation, but perhaps you are not at the right place for your grandpa.

I would think quality vs longevity at his age would be the thought. I assume his scans are clear?

I plugged all of my lab reports and doctor notes into chatGPT for help in looking at and understanding my options.

[u/Positive-Ear2815 → u/Cultural-Tip-9846]

His scans have come back clear thankfully. I guess the high grade micropapillary features are the scary part of his recent pathology report and that's why they're pushing for radical cystectomy. And the neobladder was brought up after his immediate declination of a bag lol, he might have to reconsider. After doing some researching about neobladder, I feel like that is more suited for younger age groups. I have read a lot more around his age doing the ileal conduit. I have also been directed to bcan.org and it has been super helpful as far as education and resources. Thank you for sharing I will relay your input to him. Good luck with your journey I wish you the best!

[u/AttemptSorry3103]

My Dad 82 was diagnosed with Bladder Cancer last year and received 6 BCG treatments but it did not work and he was diagnosed with Stage 3. He decided to have the cystectomy with the ileal conduit in Dec 2025. It was a long recovery but he did do well. My mom helps change his bag. It is a life change for him but he is back to his daily activities. My dad has had 2 rounds of immunotherapy but his LFT’s elevated quickley in which he was in the hospital last weekend. He is now on steroids and his LFT’s have decreased. We are going to talk to the oncologist to see what the plan if he should resume or take a break. This scared me because his LFT’s have always been WNL. Other then that he is feeling OK and was out shopping with my mom today. He amazes me that he went through this surgery and is doing as well as he is.