Bladder Cancer Group: Introduce yourself and connect with others

Thank you so much for your response. Did your husband choose neobladder or a stoma?

Hello @swh, that wait knowing cancer is present is tough. I'm glad that this week will bring you some answers and hopefully a treatment plan. There are new primary treatments being used and having success which is leading to the ability to save the bladder, even more so than a few years ago when my husband was being treated. Be sure to ask about this if it doesn't come up in discussion. In 2019 we were initially hit with the standard of care being radical cystectomy, which is quite a blow when you are first diagnosed with bladder cancer. Make sure all your options are discussed. My husband experienced BCG, Cisplatin and Gemzar chemotherapy, and Pembrolizumab immunotherapy as well as a partial cystectomy to remove a diverticulum off the bladder that held his initial tumor. In the end after medical treatment failures and regular recurrences, he chose his best option for cure with radical cystectomy. He has been free of cancer for 1.5 years since then, but many complications from surgery.
Dr. Mark Tyson is the Mayo urologist studying the bladder sparing treatments. I hope you are able to benefit from this new information. Please keep us updated after your visit this week.

Yes. She will take second Padcev Infution on May 28th. If her condition gets worse, I will Goto Tokyo to take care of her because she is single. I hope this treatment will be effective to her cancer.
She went toplay golf to fight against her cancer. She is very strong minded.

Rochester. I'm familiar with the location since my husband had heart reconstruction surgery there. He has complications thus my diagnosis is concerning since I'm the healthy one...

@fukunishi, it is hard to be a long distance caregiver. I'm sure you worry about your sister a lot. Will you go to Tokyo to visit her?

Hi @swh, I can imagine that you are worried and nervous. Papillary urothelial carcinoma is usually slow growing, and effective treatments are available. You are in good hands at Mayo Clinic. Which location are you going to next week? Is this your first time going to Mayo Clinic?

I have appts at Mayo this coming week to do more tests & meet the urologist. Their interpretation of the path report is high grade papillary urothelial carcinoma with inverted growth with concern for lamina propria invasion. I'm trying to stay calm as I await further results.

This group will be a source of valuable information and support for a fairly common cancer. My husband was diagnosed in 2019 with an aggressive muscle invasive urothelial cell carcinoma. He had multiple surgeries and chemo and immunotherapy and eventually a radical cystectomy with neobladder formation at Mayo Clinic in 2022. He is currently cancer free but many complications. You can see his story if you go to my name and read my kidney and bladder posts. We have learned that we must ask more questions, particularly about complications, and continue to learn as we go through this journey. Good luck to all and hopefully the future will hold new and less invasive therapies for bladder cancer.

I had my bladder removed about three and one-half years ago. One year later, cancer showed up in lymph nodes in my abdomen area. I was on chemotherapy for 4 months with no change. Went on immunotherapy, Keytruda, with great results . I will not ever be cancer free, but get to stop treatment at the end of June. Will have a scan every three months and will go back on treatment when necessary. Keytruda has been a blessing from God for me. Might be something to consider if you need further treatment ,

Hi there, my name is Melissa, I'm 55 yo. Was diagnosed with NMIBC of the aggressive type in 11/21. I've taken about 27 rounds of immunotherapy (BCG). The last BCG was in March. My cystoscopies remain negative. At the beginning I did have one that was suspicious and had to undergo another surgery in 2022 for it, but they have all stayed negative thank God. I go back in September to MD Anderson for another cystoscopy and my doctor said we would decide at that time if I will need any more BCG or not.
I do have a host of other problems as well. I have 3 autoimmune diseases (Hashimotos, Reynaud's and Sjogrens syndrome), plantar and palmer fibromatosis, severe back degeneration with scoliosis, DDD and more (can't remember it all!)
I am happy to be here and feel blessed this aggressive bladder cancer has not showed it's ugly head again. Stay strong y'all! We are strong people :)) 🙏