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Treatment experience for urothelial cancer with plasmcytoid variant
I am a 73 year old man that was just diagnosed with a very rare high grade urothelial carinoma of the bladder with plasmacytoid variant. This cancer is only in the bladder. Does anyone have experience with this variant and treatment plans? Are there successful bladder saving treatments for this variant? Or is the only option that works is cystectomy?
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Hello @gs121 and welcome to Connect/Bladder Cancer. So sorry you are now included in this diagnosis, especially with such a rare variant. Perhaps someone with personal experience will step in and share their information.
My husband is a 6 year survivor of a highly aggressive muscle invasive urothelial cell carcinoma. He chose radical cystectomy after a couple years of unsuccessful treatments and many recurrences. He is satisfied with the neobladder surgery although he had many complications postop. He is currently cancer free.
Mt best recommendation is to seek care/second opinion at a large referral or cancer facility for the best options with a rare cancer. My head and neck cancer location was very rare and I have been lucky to be a patient of Mayo Clinic in Rochester MN for 14 years. We drive 10 hours from Ohio but my medical team is the best. I am so grateful. Are you comfortable with your current medical facility or have you considered a second opinion?
Thank you Sue. Glad to hear your husband is cancer free. My diagnosis is has been 7 days ago, and it this point the cancer is not fully staged. I do know it is a plasmacytoid variant ..not fully plasmacytoid but parts of it is what i was told. Your suggestion to seek/care 2nd opinion at a large cancer society is something i have to do. We got this diagnosis from my urologist. He supports getting a 2nd opinion. We live i Western North Carolina...and the big regional hospital near us is not known for Oncology. Thank you again this is helpful.
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1 ReactionDear @gs121,,
I’m a 2 1/2 year survivor of what I was told was a rare aggressive variant of muscle invasive bladder cancer . My doctors in NJ had only seen 2 cases and were not sure how to treat beyond radical cystectomy . I went for a second opinion at a major academic center in New York and have been successfully treated there for two years. for me, the travel time is manageable, even though it can be one to two hours, depending on traffic each way for every doctors visit chemo, infusions and test. many here will advise to look for a NCI accredited hospital and travel if you can. It has made a huge difference for me. The Bladder Cancer Advocacy Network website can also help you find these hospitals. I recall one person in this forum, arranging for a second opinion through major institutions by sending their tests and scans. I will try to look later to find this person. Best wishes to you.