Bladder Cancer Group: Introduce yourself and connect with others

Wow Mike, that is a lot to deal with. I would think that your transplant doctor would be the one to ask, but would want to know just what are the risks? Is BCG the best way to go? Perhaps Instiladren or Gemcitabine should be discussed? The more opinions, the merrier in my mind, so is there another medical team member who can weigh in on this for you? I wish I could give you a positive experience but cannot. In dealing with my husband's muscle invasive bladder cancer treatments for 5 years we have learned to ask all the questions about side effects, complications, and frequency of these issues. Can you request a referral to a large teaching or cancer center where multiple opinions could be received?

Hi my name is Tammy, I’ve posted on this site, just felt like I should redo, I was diagnosed with Bladder cancer in February 2024, had the tumor removed, went every three months for my cystoscope in November 2024 it cancer had come back with three lesions the urologist burned them off, and February 2025 there were five more tumors had surgery then he put a chemo drug in my bladder, I then started BCG treatments I go back in July for a cystoscope and praying that it doesn’t come back, I’m going to urologist not oncologist. Is anyone else just seeing a urologist please let me know. Thanks.

Sue, thank for your reply. I have discussed the with my transplant doctor who I have been seeing for 10 years. I do trust their knowledge on dealing with different events I my life this is the most difficult that I have undertaken . I will go forward with BCG next week and will watch my blood result along the way.

I’m Randy, 71 and live near Prescott, Az. In April 2024 I had a large tumor removed from my bladder, followed by chemo from May to August. Part of the original plan then was to remove my bladder and I now have a neobladder. My follow-up checks have been clean.
I struggle with no bladder control and wear diaper at night and large Depend pads all day. Is this normal and will I ever get back a little bladder control?

Hi Randy. I have a neobladder as well (though I'm female). There are pelvic floor therapists (specifically) that can really help. If your surgeon hasn't recommended one I would suggest you try to locate one. I think that will greatly benefit you!

Hello, thank you for a place to visit for better understanding. I am a 50 year old female and I have just been diagnosed with high grade muscle invasive bladder cancer with hydronephrosis, I had a TURBT procedure done and stint placement, bladder chemotherapy treatment was used to treat the tumor area about 2 weeks ago, I was just told that I have to have neoadjuvant therapy performed then radical bladder removal surgery, further CT scans and I have severe menopausal atrophy which is requiring pelvic floor PT. Thank goodness I have an amazing husband of 25 years who is my best friend and support I could ask for, I am a caregiver for my mom who lives with us as well. Thank you for allowing me to introduce myself and my diagnosis.

Thank you

My name is Mark and I have stage 2 MIBC. Going through chemotherapy/immunotherapy now and scheduled for RC at Mayo Clinic in August. I am 72 and otherwise in good health.

Good luck and I really liked the Mayo doctors. What is a RC?

I think it is total bladder, prostrate and some lymph node removal, Radical Cystectomy.