Bladder Cancer: High grade

First visits can be overwhelming. Write down any questions you can think of. You will have more after your initial visit. Don't worry about that. We all did. I am assuming you're coming to Phoenix. You will be in the right place. There will not be a problem having chemo closer to home. My oncologist was located in Sun City. There was no issues with communication back and forth. The appointments are usually spot on time and all of clinicians are genuinely concerned for your care.

I am six weeks out from surgery. I had my bladder, prostate, and some lymph nodes removed. I am so glad it was done at Mayo.

Thank you so much for the response. It’s all quite over whelming and not sure what to expect . I’ll have a journal I write everything down in. Was it long before a treatment plan was made? He’s already had a TURBT. Had an mri Thursday and tomorrow has a PET Scan . So I’m hoping with those being done prior, this we’ll help them .

Thank you ! That is so positive !!!! We are quite over whelmed and I know each case is different , but it’s great to hear you are treated great and treated important . Does it take long after the initial appointment, to have a treatment plan ?

I had Tucson Medical Center send up my initial findings from the TURP as I was not happy with TMC for lots of reasons! After Mayo reviewed those, I travelled up to Phx for another and better procedure, though still day surgery. As I recall after that, it was abut 3-4 weeks until surgery. Keep in mind that Phx is hard to find temporary housing in the months of Nov-Mar due to all the snowbirds, golf tournaments, Spring training, and the like! Mayo can recommned long term housing if needed but I found a place inPhx for $2000 for two weeks, but it was marginal, and my dogs made me leave and come home after one week!

I also believe my email address is available via my profile and instructions for private messaging should you desire that. I am happy to share my personal experiences. Also, I belong to an Ostomy Support Group here and there may well be one close to you. Others at these groups also are very helpful.

Every location is different on turn around time. Im in the Cincinnati area and did not receive care at Mayo. Two weeks after my turbt I had a port put in and the following week started chemo. My turn around was very quick thankfully. I hope things go well tomorrow!!

Work with your doctor.
There are many treatments avilable, like adstiladrin, to try first before radical surgery.

RC depends on pathology. Most often it is not required. In other cases it is the best choice without delay. CTDNA is really key in assessing risk as is imaging.

My turn around was 10 to 11 weeks. Symptoms late August. Cystoscopy mid-September. TURBT 1 mid-October. TURBT early November. RC mid-November. I skipped NAC as it is not indicated for PT1A. Turned out it was PT3AN1M0 because of diverticulum which is a high risk factor due to absence of muscle wall.

Anyone have success with Adstiladrin?

I am hoping someone who has never been NED AFTER EVERY ROUND OF BCG..6 rounds oh dem doc intravesically..going on 5 th Turbt since oct 2023..high grade. Papillary. Surface only in bladder..no laminated invasion….so I want to try this before I remove my bladder..hopefully someone has a successful story to tell…..