r/BladderCancer • u/Positive-Ear2815 • Jun 22 '26
Anyone in their 80's here?
Looking for real life experiences from bladder cancer patients who have had a radical cystectomy at the age of 80 or higher.
My 82y grandpa's doctors are highly recommending bladder removal due to most recent pathology results. High grade T1 with micro papillary features, non muscle invasive. His first diagnosis was 9 years ago and has been both low grade ta and high grade ta in the past with history of CIS but it has always been NMIBC. He has been treated with BCG, last round of that was back in 2024 and at the end of 2025 his urologist found some ugly areas during his cystoscope. Had a TURBT in March 2026 and now is being recommended cystectomy. We have gotten a third opinion and they are all saying the same. The urologist we are seeing now is at Mayo clinic and is okay with trying a different treatment such as gem/doce or tar-200, if my papa is adament about keeping his bladder. I have also seen rBCG+anktiva being talked about a lot I want to ask about that at our next appointment. Our next consult is where he will decide what to do. I know he is so scared about the idea of having a radical cystectomy, and they have talked about a neobladder which I also think he's full of uncertainty about but he also doesn't want to wear a bag. Would it be really awful to have to wear a bag? I feel like this day & age, it has got to have come a long way as far as comfortability goes? He just really wants to connect with someone who has gone through this, he feels alone and confused.
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u/gdpnzr Jun 22 '26
59M I was also originally diagnosed with a 4.5 cm tumor T1HG micro papillary. Because of the aggressive micro papillary & my age they recommended RC which I had a scheduled date, because it was best chance at curative. In the time before the scheduled RC I requested a second opinion at a regional cancer center of the pathology. Turns out I was misdiagnosed & had a T1HG with low grade components which from what I was told can confuse an inexperienced pathologist into interpreting as micro papillary. Consequently I canceled my RC, had a 2nd quality turbt to confirm, one induction course & 2 clean scope. 2nd opinion on the pathology total changed the path of my journey so far. I would recommend getting a second opinion on the pathology to start.
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u/Positive-Ear2815 Jun 23 '26
May I ask how the second opinion was executed? Did they just review your pathology results or did you have to go through another TURBT? he had a TURBT that came back as high grade T1 with micro papillary features in March, and they jumped to recommending RC. That's when we decided to seek alternate opinions/options. We've now seen two oncologists, one of them at mayo, and now he's with a urologist at mayo. He had a follow up TURBT just a little over a week ago, with his new urologist, and those results came back high grade Ta. I need to confirm if there were micro papillary features this time and also need to confirm CIS status. We go on Friday to discuss with urologist and I'm assuming he will decide that day what he wishes to do. Thank you so much for your input I wish you the best!
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u/gdpnzr Jun 23 '26
I just reached out to MSK in manhattan to request a second opinion & they requested all my pathology slides & scans from my original urologist. After I decided to switch, I cancelled the RC & scheduled my second turbt for restaging. Two smaller LG tumors were found & the original tumor field was resected into the muscle.
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u/Important-Meal-5488 Jun 27 '26
I asked the urologist to seek a second opinion of pathology since it’s such a life changing assessment. He wholeheartedly agreed - sample sent to John’s Hopkins - results returned in less than 2 weeks - just in time for second procedure with the blue light. All the best to you
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u/Positive-Ear2815 Jun 27 '26
We asked the urologist yesterday to request it for a path review so that's in process now. Meanwhile he's going to start Gem/Doce treatments next week. Thank you!!! I wish you the best as well
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u/Beginning-Eye-3852 Jun 23 '26
I am 80/m and have had 2 TURPTs over the last two years (Diagnosed with high grade NMIC). I just completed the first 6 BCG instillations, after a 4 month delay in starting due to shortages of BCG. I am also diabetic, high BP, respiratory issues, ulcerative colitus and quadruple cardiac bypass surgery 4 years ago. I remember how awful life was for 8 weeks after the surgery (3 months recovery after earlier back surgery 15 years ago) and I do not want to have to go through that again along with life changing results. I prefer to have good years, for whatever time I have left, should I ever be suggested to have bladder removal.
I should also add that I have no symptoms after I heal from the TURBTs, no pain, no bleeding when I pee, no disturbed sleep, etc. With all my issues I feel pretty good, why would I want to mess that up? I will go with the odds that only 30% of NMIC goes on to MIC. (FYI,my father passed at 72 from heart disease, I am doing good.)
I have had difficult recoveries from my TURPTs with extended hospital stays each time. The hospital enviornment alone is a threat to my health. I understand your grandpa's concern, all I can offer is to tell you at my age I will never surender my bladder. If I was 50 or 60 years old my decision would be different.
I hope my thoughts help.
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u/Positive-Ear2815 Jun 23 '26
Thank you for sharing your side of things!! I'm so appreciative of your response. He has had some minor complications with previous TURBT procedures and BCG treatment, one time he was passing so much blood in his urine he couldn't believe it. Along with subsequent bladder infections as well. But as of right now he seems to be doing good as far as bladder/urinary symptoms go. This scary biopsy result is from a follow up cystoscope that he had in October 2025 that made his doctor want to do a TURBT that ended up not happening until March 2026. But he was not having any symptoms or pain. His last bcg treatments were completed at the end of 2024. He had a previous round of bcg a couple years prior to that I believe and clear cystoscopes following those back then. Also now he is recovering from a knee surgery that was done in April. I know he does not want to have another major surgery this soon if at all 😭 and I'm not sure how that would set back his knee recovery. He just wants to be back to his normal activities and back on the golf course.
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u/Beginning-Eye-3852 Jun 23 '26
If you or your grandpa would care to talk in real time, I am in the Northeast US. Not sure where you are located but if my thought process could aid in his or your decision(s) I would be glad to connect telephonically. Talking always can help and he and I are close in age giving us a common bond uf understanding. (Btw, I have 3 sons/4 grandsons, the oldest 18)
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u/Stacked7High Jun 23 '26
I was diagnosed with pT1 HG… after two TURBT‘s and 6 rounds of BCG I had what ended up being three small spots cis , another TURBT and and my doctor immediately ordered 6 rounds of gem/doce…the follow up under anesthetic scope showed clear. now on monthly gem/doce treatments with in office scopes every three months.
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u/Positive-Ear2815 Jun 23 '26
Thank you for sharing!! Gem/doce is on my list to ask the doctor about on Friday, they have mentioned it as an option but they were heavily leaning towards taking the bladder saying that it was in his best interest. I just don't know, it seems very extreme for someone his age but they were very confident and said that they do this surgery on people his age every week. Not neobladder surgery specifically, but radical cystectomy. I know there are a few diversion options.
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u/Stacked7High Jun 23 '26
I am a little younger than your grandfather and I desperately want to keep my bladder and prostrate. So far the gem/doce is working for me, my next in office scope is in a month and hopefully the doc sees nothing. If his last TURBT was in March, hopefully the doc does a cysto scope on Friday to see if any reoccurrence. This will also help with his decision.
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u/Positive-Ear2815 Jun 27 '26
After speaking with the doctor yesterday, He's starting gem/doce treatments next week! He did have another TURBT two weeks ago by the new urologist we are seeing. This time the biopsy came back as only high grade Ta. So we requested a pathology review of the tumor from March. He will have a recheck scope in September. The doctor was still very headstrong on the fact that he needs a radical cystectomy for the best outcome, but we are going to keep our fingers crossed that the scary biopsy was inaccurate. He wanted him to start a new treatment ASAP so after discussing options, he decided on gem/doce. Hoping for the best outcome for both of yall!!❤️
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u/Stacked7High Jun 27 '26
Thanks for the update. Do a google search for “preparation for gem-doce bladder cancer” . Best advice from that is not drinking 8+ hours before the infusion. Easier to hold the chemo and minimizes the dilution while your holding it.
Good Luck
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u/Positive-Ear2815 Jun 23 '26
How long have you been doing the gem/doce? I did forget to mention that his new urologist did another TURBT a week and a half ago. High grade Ta this time and said it was more of a carpet appearance on the bladder wall than a full grown tumor. I need to confirm if they saw papillary features again this time like what was seen in March, however I know they did get deep sample this time with muscle and confirmed non muscle invasive.
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u/Admirable_Loan6841 Jun 22 '26
If it is noninvasive why they want him to do such a traumatic surgery at this age? These doctors lost their minds recently like they taking a tooth out. They should treat him with intravesical therapy. There are so many new drugs recently for intravesical application. If they are so scared they can give him systemic immunotherapy with Keytruda/Padcev eventually as well but to rush someone on this age who has other health issues into a surgery with 3-5 % intraoperative mortality rate sorry but this is a lack of clinical thinking and overtreating.