Dad has Leptomeningeal Disease via Bladder Cancer

[u/windybutter299]

Hi - my dad (68M, 200lbs, white, very active and “healthy”) was diagnosed with advanced bladder cancer, metastatic to the brain and LMD. He has never had any typical bladder cancer signs like blood in urine or pain. He peed a little more frequently but chalked it up to being an “old guy”. Beginning in June, he started feeling very dizzy and having headaches and he thought that he overdid it exercising and it could’ve been BPPV or something similar. In early August, he experienced vision changes which led him to an MRI to discover a 1 cm tumor on his cerebellum. The doctors immediately believed it was a secondary cancer, did a CT scan, which discovered a 4 cm lesion on his bladder that was removed via TURBT. Further MRIs and LP found LMD. His CSF pressure was incredibly high.

This past week he has had a VP shunt placed and begins WBR next week. What can we expect? I am reading LMD is rare, and bladder to LMD is exceptionally rare. Could that be good or bad? What prognosis are we looking at? Any chemo, clinical trials we should be pushing for? He is being treated at the Cleveland Clinic main campus and I believe he is in good hands, but I’m just desperate for any insight or help, especially bladder related cases, as even the doctors there are perplexed.

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[u/Porencephaly]

LMD is indeed rare with bladder cancer but not unheard-of. Unfortunately the honest truth is that it usually has a poor prognosis in most types of cancer. The radiation will hopefully help to prevent it from spreading, but LMD has a high propensity to do so even with aggressive treatment. This is perhaps starting to change with some specific cancers like melanoma that have had big strides in immunotherapy etc in the past decade, but I am not sure if bladder cancer is among that group. Nonetheless since he was only diagnosed recently, it makes sense to be aggressive with treatment and hope for good response. Sorry you (and he) are going through this.

[u/windybutter299 → u/Porencephaly]

Thank you so much for the response.