Diagnosed with High-Grade Urothelial Cell Carcinoma - ANYONE?

Did he have muscle invasive cancer?

no T1 High grade

I would like some help deciding how I should discuss future treatments for my high grade urothelial metastatic carcinoma which was diagnosed in June 2022. I am 80 yrs old with no prior cancer and this has been quite a journey. The Oncologist started me on Cisplaten/Gemcitabine but after 7 infusions with a CAT scan showing positive results he discontinued that therapy due to a side effect of severe low white blood cell counts. He then started me on Keytruda but after 4 infusions my next CAT scan showed negative results and some regrowth of the liver lesions and bone cancer. He has had me on a targeted chemotherapy called PadSev since January and successive CAT scans show Kidney issues and liver lesions are gone and bone cancer reducing and healing. Needless to say that severe chemotherapy for the past nine months has resulted in neuropathy in my feet and hands such that I am needing walking assistance and other nerve and skin issues.

The Oncologist wants to continue my chemo regimen of two infusions every three weeks for the indefinite future--as long as I can tolerate it--since that is the only approach that will keep my cancer from returning and becoming more aggressive. I'm not sure I can continue to have my neuropathy worsen, and wonder what other options the Oncologist has that I could perhaps discuss with him.

Does anyone have any thoughts? Thanks!!.

@onemaster

It sounds like you are questioning your oncologist. Are you being seen at Mayo or any other Cancer center? I would get a 2nd opinion from another qualified doctor if you feel that your medical care is not headed in the right direction. You may even ask your current doctor to consult with another one of his/her peers or a neurologist.

Being treated at Corewell (formerly Spectrum Health) in Grand Rapids, Mi. I think I will ask for a referral to a neurologist

My nephew lives in Grand Rapids. How about UM in Ann Arbor? My brother just got out of ICU after 3 months at UM. Best hospital around as well as Trinity.

@onemaster, how are you doing? Have you decided to continue with treatment for now?

Thanks for replying and asking. At this point I am continuing treatment. The most recent CT scan 10 days ago showed some good and bad news. Good news was there doesn't appear to be regrowth of previous tumors on my liver, and the bone metastatic cancers seem to be receding. The bad news is there appears to be a small spot/cloudy outline inside segment 7 of my liver that is new since my last CT in June. The Oncologist is sending me for a MRI and then possible treatment to Radiology to see if that is cancer and treat if possible. I am assuming that process will take until December and then another CT to check what's happening. In the meantime I am continuing to experience the 'joys and tribulations" of chemo side affects--neuropathy, muscle weakness, and weight loss. My wife has been a wonderful support and encourager and driver and everything beyond expectation, and that is keeping me going. Plus, my faith and experience of God's closeness in this time of life journey.

Get thee to U of M or Mayo. This is not an uncomplicated diagnosis….

My 83 year old father in law just had a cancerous kidney removed in June. Although my understanding is that Urothelial Carcinoma is more common in the bladder, his was a high-grade UC in that one kidney, with no mets found.

For adjuvant therapy, his oncologist concluded Gemcitabine + Cisplatin/Carboplatin would be too hard on him, so he'll soon start monthly Opdivo for a year.

My own father, who lost his battle with pleural mesothelioma in June at age 85, really struggled on a combination of Opdivo + Yervoy after 4 months, so I'm hoping my FIL does better. If it's only one drug instead of two, and at 4-week intervals instead of 3-week, he has a good chance, but a few other comorbidities to deal with. 🙁

I'll be re-reading the history and following this thread closely. Thanks everyone for sharing!