Does getting a proactive RC make sense?

Yes. You already answered your own question.

I'm a 55 yo female and in my situation I didn't have a choice but to do a RC (MIBC) and of course everyone's situation and health is different. That being said, I've often wondered when reading posts about the other treatments if it wasn't best for someone to go ahead with a RC rather than go through multiple reoccurring tumors only to eventually end up in the same place.

I've read that there are studies in doing whatever possible now to treat and maintain the bladder since in some cases bladders have been found to be removed when perhaps they didn't need to be. I think your overall health has a lot to do with your best course of action. If you're otherwise healthy enough you would be able to recover well from the surgery. My advice would be to listen to your intuition and if you trust and have been pleased with your medical team.... ask as many questions as you can think of. I hope you do well!!

Hello @quahog.
My husband chose RC with neobladder after a partial cystectomy ( diverticulum containing initial tumor removed) and 2 years of chemo, BCG, repeated TURBTs for recurrent disease. His was also a highly aggressive UTC to begin with, with muscle invasion due to location in diverticulum. He had a short trial on Keytruda which had side effects and didn't stop the cancer. I know recent research is leaning toward saving the bladder and perhaps with newer drugs and immunotherapy that will be possible. Other patients can go for many years controlling their disease but likely a less invasive and aggressive UTC. RC is not for the faint of heart, and Tim had so many complications that he had numerous procedures for the next 2 years, resulting in some loss of kidney function. If that can happen at Mayo Clinic Rochester, it can happen anywhere. He just hit the complication lottery , one that was best avoided.

Diverticulum is always automatically high risk and PT3A/B as there is no muscle wall. Unfortunately, RC comes with a high risk of complications. I suffered two or three AKIs so far. But that was more likely caused by DDMVAC than the RC. I also had cellulitis of my upper lip after DDMVAC 4. So far nivolumab immunotherapy is more tolerable than DDMVAC but I experience fatigue and back and other pain intermittently.

I started with high grade, invasive urothelial carcinoma in my right uterer. That spread to my bladder. Was not given any other option than a RC by two urologist. Glad I did not try BCG. After removal of bladder and prostate, it was discovered that cancer was starting in the prostate and microscopic bladder cancer in one lymph nodes. So, I'm glad we went right to the surgery.

I am 73 and had aggressive bladder cancer. No invasion in the bladder muscle.Went through the 6 BCG treatments.
I am not telling anyone what to do. So do what is right for you.
For me, I will try the various treatments before I will do the RC. The RC would be the last treatment. That is my choice.

Different strokes for different folks. But from a risk management perspective RC has the best outcomes when dealing with multifocal high grade BC. It can become MIBC and metastatic very rapidly. Even when under treatment with BCG or GEM/DOCE.

First, a thank you to everyone who took the time to advise and or relate their own experiences. It is so valuable to have this kind of experience available. I just wanted to give you all an update on recent events. Just received an email with results of the five biopsies taken during my recent cystoscope and they were all benign. The only observation of note was no new growths and general irritation on the dome and sides of the bladder. This was an expected positive response to BCG and indicates that the treatment had the expected response. Meeting with the urologist on Thursday to hear the practice’s response and suggested treatment plan. Regardless of that plan, I’m going to seek second and third opinions from our local cancer center and the nearby Mayo Clinic. I want as much information and recommendations as possible before I submit to additional treatments.

Things sound very hopeful! I think second opinions are always a great idea and your doctors should encourage you to get them, if they are doctors with your best interests in mind. When I told my doctors I was doing that they were all for it. Good luck!

I even got fourth, fifth and sixth opinions. One through three wanted to treat locally only. Four wanted to do RC (in Germany). Five and six also agreed to RC. Number six had an opening for surgery a week later and I took it right away.