WPI
Yes, some of have gone through pre-RC chemo (Cisplatin and Gemzar) then put the RC on hold. Whether we have been successful or not is yet to be determined. The VA has been supportive of my decision, and that of two others I have met. The option for RC still exists for me (us) - However none of us are metastatic.
It is real hard to compare treatment options by looking at a small group. Each of us has unique factors that are too important to dismiss in the small group. Either we are in good shape or not, have larger or smaller risk factors, and family histories are different, etc.
When we choose a course of action today, we have, at best, a statistical chance of knowing our tomorrow - based on years of medical studies involving thousands of individuals and a variety of treatments.
You and I both have bladder cancer.
My REAL issue of concern is my recent kidney cancer; I lost one kidney 50 years ago. My focus is on the one remaining kidney - I don't want to wind up with zero kidneys. For me, pre-RC chemo turned the kidney issue around - to the amazement and surprise of my doctors. So, I am in a better place than prior to chemo, and willing to stay her as long as possible. Not all my docs agree with my decision, but they are supportive - at least for now.
You describe lymph node metastasizes. From here, it seems you have a different big issue than me. There are lots of people in this forum who have been where you are - and there are many long term success stories. I suspect most people posting here who dealt with stage 4 bladder cancer have focused on the metastases and surrendered their bladder, as per the "gold standard" (I hate that term) of treatment.
All the statistics in the world, all the studies, all the recommended cures, potions and snake oils, and lifestyle changes fail to apply to any single individual.
In the end, it is an individual decision - what do I THINK is most likely (and acceptable) course of treatment to allow me to deal with my cancer and continue on with life. I have made a decision I am comfortable with, reserving the option to change my mind as time goes on.
I hope you can find a encouraging course of action, and a care team, that will provide you with life, comfort and peace.
Best
Jack