Bladder Cancer Group: Introduce yourself and connect with others

My sister is terminal stage of Bladder cancer. Chemotherapy and Immunotherapy did not work at all.
She will take PADCEV infusion next week. This medicine has various side effects.
She lives in Tokyo alone. Right now, she does not have urine and self catheterization.
She is 68 years old. I hope she will be able to live as much as much as possible.

I, too, have bladder cancer and am presently going through immunotherapy, but just one treatment so far, with many weekly sessions to follow. The Mayo Clinic was unable to treat my cancer, so I am using a local cancer/hematology clinic. At age 82, I have little hope for long-term survival and will not continue with the treatments if the side effects are too severe.

I wish your sister the best of luck. She is in my prayers!

Thank you You too.

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 :)) 🙏

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 ,

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 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.

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?

@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?

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...