Bladder Cancer Group: Introduce yourself and connect with others

Thank 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.

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!

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?

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.

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.

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?

Hello l0ud1etr1ch. I would recommend looking into your referral as soon as possible. Also researching online for treatment regimens on websites like Mayo Clinic, Harvard Health, Johns Hopkins, Memorial Sloan Kettering. It is hard to find a urological oncologist but that is the better way to go. In my husband's experience, a discussion with a Mayo oncologist was basically just a referral back to the urologist, as they had no urological oncologists a that time. But there are studies demonstrating better outcomes with a chemo therapy for bladder cancer prior to surgery. There are new combinations of Immunotherapy drugs being used for bladder cancer. And you should know from your first procedure how aggressive and if your tumor was muscle invasive or not because that will affect the treatment plan. It looks like you must have seen your local urologist yesterday. Did he give you any more information about your tumor and treatment plan? Always ask about potential complications and their frequency. With multiple tumors in your bladder, you should be looking for a large cancer center referral for your best treatment options. My husband has had all of his surgeries at Mayo Clinic in Rochester MN, which is a 10 hour drive for us. But I feel like we got the best options offered for his care. He has had a radical cystectomy with neobladder and has been clear of cancer for a few years now.

Hello @hockeyfan60457. If you have to have a bladder cancer, best to be lo grade papillary UC. An early catch does bode well for a better treatment. Bladder cancer does like to recur, as you can imagine cancer cells floating around in the urine, attaching to the bladder wall wherever they want to. Frequent monitoring after treatment will help your medical team to stay on top of any new growths. Many people have success with treating their recurrences for years just by catching them early. And new treatments are showing up frequently. Don't hesitate to have a second opinion if you are not comfortable with your treatment plan.

Kirsten, I am sorry that you are dealing with this and at such a young age. My husband has had a radical cystectomy with neobladder for 4 years now. He was a BCG failure and got tired of repeated TURBTs and other treatments. His initial tumor was highly aggressive and muscle invasive. His BCG treatments produced minimal discomfort. A feeling of urgency for the first 12-24 hours after instillation was his only side effect. I see others on here who have more symptoms. As he was in the maintenance timing of BCG, he had a recurring spot so Keytruda was tried prior to the cystectomy. I know many people will go for years on maintenance scopes and turbts but I suspect they have a lower grade of cancer.
Keep educating yourself on newer treatments and don't hesitate asking for a second opinion or referral to a large cancer center. You may find options there that a local urologist does not offer.