Mets Day 35 - GW's view on treatment options

Today I met with oncologist Dr. Aragon-Ching at GW to discuss my treatment options.  She took more than an hour to consult with us in detail (Chelsea also was there, with a list of questions, and we recorded it so Jennifer could listen later).  It's hard to boil everything down because we covered so much territory, but here's what I took away from our meeting:

• There is no proven, established systemic treatment for me at this point. Without a target to shoot at, neither chemo nor radiation makes any sense.  Studies using taxenes require a solid tumor, so I am not eligible for those. 
• The standard of care for someone in my position is to carefully monitor me through CT scans every 3 months or so and see if any distant metastases develop.  
• Oncologists lack the diagnostic tools or knowledge of drugs that can work to prevent the spread of my form of cancer.  
• The clinical study identified by the University of Chicago (info here) is probably the best thing for me right now, although Dr. Aragon-Ching is unwilling to speculate on whether or not it will work.  My cancer has to have specific properties, which has yet to be determined, and even if I qualify, it's a double blind study, which means that there is only a 50% chance that I'd get the experimental process, but the other half would get the ordinary standard of care in any event. She encouraged us to follow up with that study.  (Chelsea already has done so.) 
• Dr. Aragon-Ching did not want to speculate regarding my odds of survival for either the standard 5 year time period for cancer patients, or a shorter amount of time.  She emphasized that each cancer patient is different, and each disease progression is different.  The farthest she would go is to make two general statements:  (1) of all patients with Stage 4 urothelial cancer (like me), around 10% survive for five years.  (2) once distant metasteses are found, the mean survival period is about 12 months.  She added that I am at the "good" end of stage 4, to the extent there is such a thing. 

This was a very helpful visit.  I was surprised when she told me that most patients didn't want to know as many specifics as me, or were not as proactive as me in examining their options.  I'd prefer knowing the facts, even (or especially) if the facts are negative.  It lets me better plan regarding those few things I can control.