Newly Diagnosed

Thanks Joe for your reply I am appreciate you assuring me that removing the bladder isn't as serious of a surgery when you are young and that a neo bladder would allow me to go more or less back to my life before this nightmare started.  I am choosing to stay positive that chemo will help me and I will have full response to the chemo. I have accepted that this is with me for the rest of my life and even if I remove my bladder I still run the risk the cancer can return some place else. I don't know there is so much info out there and so much of it conflicts with the info you read before. I am just taking it one day at a time and making decisions as they come. anyone who has been diagnosed with bladder cancer has been dealt a bad set of cards. We just need to support one another and hopefully we can come out the other end  tougher and hopefully "cancer free" for many many years.

I have not faced situation like yours.  I understand that It is one of toughest choices you have to make.  But, if you can know what your life style would be like after cystectomy, it may lessen some uncertainty.  The surgery of cystectomy itself does not seem high risk provided it is done at by a surgeon who has done many urinarily diversion of your choice and the hospital has done many cystectomies. 
You will likely choose neobladder urinary diversion unless urologist finds it anatomically and physiologically neobladder is not suitable.  With neobladder, nothing has changed from outside.  Pee come out as it did before.   The difference is that a new bladder is made with a sections of small and large intestine. Because there are no muscle to shrink to squeeze out urine and no nerve connection to brain tell it is time to void, you need to learn /teach when to void.  I have heard that people with neobladder feel fullness in the abdomen  and/or just goes to washroom every 3-4 hours. Most people seem to gain full continence during the day time.  At night, some will train to have continence by using an alarm clock.   Some choose a condom catheter which is connected to a collection bag, so he can sleep through.
I think one of key questions especially for a young patient is preservation of erectile function and ability to conceive  child.  Radical cystectomy usually removes multiple pelvic lymph nodes and also prostate.  When there are nerves attached on both side of prostate. So, the prostate needs to be removed without damaging those nerves. Still, I hear that radical cystectomy affects erectile dysfunction in about 50% of cases.  I do not know in detail, but if cystectomy is done at early stage, prostate can be preserved and erectile fuction can be in tact  even after surgery.   This is something you can find out from your urologist.

This may sound counterintuitive but I understand that many urologist recommend early cystectomy if high risk non muscle invasive BCa because you are young because your life style will be most likely similar prior to the surgery.  Also, you do not have to go through lengthy bladder preservation treatment with which still have possibility of progression.  Statistically, early cystectomy gives much longer disease specific survival compared to cystectomy after bladder preservation treatment is done.  The video with the link below explores this subject.

bit.ly/41sDh3y

yes I sure will. I do have a Nuclear boe scan scheduled on Wednesday and I am meeting with the oncologist Dr Morganstein Thursday afternoon. I will let everyone know how the meeting with him goes and what the results of the nuclear bone scan are.

Thank you I don't think your being blunt. perhaps I am wrong or foolish but I am holding on to the fact that I will be able to hold on to my bladder being only 42 and in good health and fairly active. hopefully the oncologist will be able to help me . Dr Morganstein ( the oncologist) originally staged me with stage 1 ucc and carcinoma Insitu. he originally felt I did not need chemo and bcg would be effective. I have access to my medical file and the results of all the tests and surgical procedure they have been done via MyChart but I guess I will see what he thinks this time. I do appreciate you taking the time to respond to me.