Connect
← Return to Were you exposed to any of the classic bladder cancer risk factors?
Discussion
Were you exposed to any of the classic bladder cancer risk factors?
Bladder Cancer | Last Active: Mar 10 9:47am | Replies (32)Comment receiving replies
I am sorry to hear of your diagnosis back in 2023. May I ask what treatments you have been given since that time and how effective they have been?
Being a New Yorker, the World Trade Center tragedy struck horror in everyone's heart; it seemed unbelievable. The devastation from every aspect took years and years to recover from and, of course, unfortunately and sadly countless families will have to live with this forever. Somehow, the fact that this occurred still seems unfathomable - that evil to this magnitude can exist.
Having first been surprisingly diagnosed this past summer, I have just begun on this unwelcomed journey but I am thankful for this group of good and empathic people who will lend support when I need it.
I do hope you are doing well presently and am sending my best wishes.
Replies to "@141emp I am sorry to hear of your diagnosis back in 2023. May I ask what..."
Connect
@deidre77 Thank you and my apologies for delay but just seeing this now. I had a radical cystectomy done robotically at Mount Sinai in NY in January 24 with a urostomy. No issues with the surgery or life with the bag. Minimally invasive with 6 small incisions, discharged after 4 days with Tylenol! I’m still amazed. Unfortunately the pathology showed it was stage 3, not stage 2 which was the original thought post TURBT at the local community hospital I started at in NJ. 6 cycles of chemo (gemcitibine and cisplatin); cancer was not detectable based on Signatera after cycle 4. I won’t kid you, chemo was not easy with the usual side effects (nausea, diarrhea and some loss of appetite) plus I developed blood clots in minor veins in my arms. The cancer became detectable again almost a year later in May 2025 and I had 6 cycles of Padcev and Keytruda. Treatment sessions were much easier but bad skin rashes, complete loss of appetite and sense of taste were very hard. The cancer became non detectable based on PET scan and Signatera after cycle 4. The plan would have been to stay on Padcev and Keytruda until it stopped working or until my body couldn’t tolerate it. That happened in Oct 2025. I had lost about 35 pounds and became very weak. My doctor stopped treatment until December 2025. I’m now only on Keytruda with far fewer side effects, eating and sleeping well and maintaining my weight. I’ve just been discharged from Physical Therapy and am getting back to my routine at the gym and life in general. Scans and Signatera remain good . It was very hard when the cancer returned in May 2025 but I’ve learned that this journey isn’t always a straight line and am very blessed to have phenomenal family friends, doctors and medical professionals guiding my care. It gives me great peace of mind. I don’t like to think about what would have happened if I had not listened to my sister and not gone to Mount Sinai for a second opinion. The medical team is truly awesome and I think of my 3 main drs as honorary sons ( that I didn’t have to put through medical school😉)