Oh @ljean63. I’m sending you a big hug. I can imagine that you’re both feeling defeated. I moved both your messages to your original discussion so that you can continue to connect with @sandielegal @ryman @maydayaz @naturegirl5 @bonniewhite56 @gingerw @plugger and others who understand.

I know exactly what you mean about thinking of all the questions you could’ve and should’ve asked but didn’t think of during the appointment. You were understandably in a state of shock. I can see you’ve thought of good questions to ask as posted here. Do you still have your nurse navigator and a contact number? I suggest starting with the nurse navigator to get answers to your questions and, if necessary, schedule a new consult to discuss next steps.

My husband had an aggressive muscle invasive bladder cancer diagnosed in 2019. Located in a pocket-like diverticulum off the bladder, that area was surgically removed with lymph nodes and 1 out of 29 nodes was positive so chemo was done, followed by BCG. While on maintenance BCG, and every 3 months after, when he had repeat cystoscopies, there was either a suspicious place to watch or need for a biopsy. I know how shocking the news is when expecting a clear report. If you can picture the bladder full of urine and cancer cells can be shed from the tumor and start up anywhere else in the bladder where they land. In their initial microscopic state they cannot be seen. and will progress. There are a percentage of tumors that do not respond to chemo/radiation/BCG.
After 2 years of this pattern, he elected to have a radical cystectomy with neobladder at Mayo. We are still dealing with complications from this surgery 7 months later, with more surgery needed. The light at the end of the tunnel is that there is no cancer present now. It is terribly discouraging even at this point, when the solution is now the source of the problem. From the first Mayo visit, we have been told that bladder cancer tends to recur. I have seen on this forum where people have gone for many years having their small recurrences removed via cystoscopy on a regular basis. When it is a high grade tumor with aggressive activity, I believe the odds of recurrence is going to be higher. While bladder removal was not an option for him initially at all, he made the decision to go for a potential cure after these repeated recurrences. My advice after fighting with my own cancer for over 10 years is to be very open minded going into each scan/cystoscopy. Cancer does what it wants to and even with the best of treatment, it can recur, so expect the unexpected and recurrence will not come as such a shock. I also highly recommend researching diet changes, immune support,etc for cancer patients. I love the book by the Mayo palliative care physician Ed Creagan "How Not to be my Patient" and "Radical Remissions " by Kelly Turner for patient stories and practical suggestions for eliminating your cancer with complementary methods. Cancer is a battle that you must work to win. The medical part is just the main cavalry, there are many weapons you can find to support them. Good luck to you and your husband. Be strong and advocate for yourselves.