Meeting today to discuss RC - what to ask?

I second the thought of getting to a major center (or at least to a doctor who does LOTS of surgeries.) Last year at this time, I couldn't convince my 80-year-old father how important this was and he suffered the consequences with pretty severe complications from his surgery. He did not have a bone scan before his operation nor several of the other X-rays/scans that should have been done. Heck, don't know why I think he would have those tests...he didn't even have the pre-op bowel prep! In case you couldn't tell, I'm being VERY sarcastic with that last statement. To me, Dad's less-than-stellar care just reinforces how important it is to have a highly experienced bladder surgeon and be in a reputable hospital. Just this week, Dad has moved on to a new urologist who is at a major university hospital in a nearby city and so far, we have seen a major difference in level of treatment. This doctor's office actually called Dad back when they said they would!! Amazing.

Dad has the external pouch and seems to be adjusting as it has been almost a year to the day since his surgery. One of the reasons he got this type of diversion was the doctor's thoughts that, at Dad's age, he might not possess the manual dexterity to cath as he got older if he happened to develop arthritis in his hands. My Mom currently does the changing for him twice a week even though I encourage him to do it himself.

My Dad, too, is young for his age (he was on the roof of the house the day before his surgery cleaning out gutters!) but has seemed to age quite a bit after the surgery. It was a slow process building his strength back up. I guess it takes a lot longer to recover from things as you get older. Now he is talking about doing the yard work again as soon as he recovers from his surgery next week to remove a urethral polyp.

Please get your Mom to a good hospital with a good doctor. Everyone on this forum will tell you that, and I know from experience what happens if you don't.

Hello! My mother is 69 and is now in stage IV bladder cancer. We also live in TN. I wish we had gone to Vanderbilt but everything happened so fast and we were not armed with knowledge. Mama has the external bag and doesn't miss a beat. It really isn't too bad (so she says). There are a couple of things that I wish we had done differently(others please feel free to disagree or correct me). I wish we had gotten her to a large cancer hospital ASAP. I wish we had insisted on scans etc to see if there was spread before proceeding with RC.I will tell you that this place has been a God send. Ask anything....someone knows and everyone cares!

I might argue with you on maintenance Ginger....but then i love my Indiana Pouch so i'm obviously biased.

Kathleen,

I agree, Vanderbilt is a well known for this surgery, and 4 hours beats 10 as she wants to have access if needed after surgery. They will probably want there own test done, its just the case that they want there own pathology reading the tests, so not unusual. I still vote for the bag, it is the safest route for her and the easiest to maintain. Ginger

Its still all a part of the Vanderbilt-Ingram Cancer center. Since her appointment is next week its my bet that Dr. Chang will want to do the tests there. Just make sure you bring all your lab results and discharge papers or anything you have relating to your moms blc. He may even want to do another FISH.
Memorial Sloan is great but won't do you much good if Mom won't get on a plane...you will get excellent care at Vanderbilt. Dr. Chang is a Surgical/Oncologist. Pat

Just returned from the Urologist's office. He said Mom's FISH was positive after the the "wash" was "atypical". He said he would need to look in the kidneys before proceding to RC to ensure CIS is not in the kidneys (he looked in July - they were clear then). My Mom is panicked by all of this. He recommended the external bag of the three diversions. I asked about a referral to Vanderbilt - and he said that would be fine, but said if she were willing to travel, he'd recommend Memorial Sloan Kettering in NY. I just called Mem'l Sloan Kettering, and rather than making an appt, they looked on their list of "comprehensive cancer centers" and recommended Vanderbilt as being closer. They said both are "comprehensive cancer centers" - the same.

For the BEST CARE, where should she go? She refuses to fly - hasn't flown for 30 years, but says she will fly now if it's necessary (although the stress/fear of flying might not be good for her). Vanderbilt is 4 hours away. Sloan Kettering is over 10.

Dad made her an appt at Vanderbilt Medical Center, Urology Dept (Dr. Chang). This is a separate building from the "Vanderbilt Ingram Cancer Center". It is all so confusing. I called Vanderbilt Urology and was told the physicians operate in the "Medical Center" not the "cancer center". Is this still optimal?

If repeat visits are involved before surgery, Vanderbilt would be best for convenience, but we want the best care.

We don't know if Vanderbilt wants to do the kidney check - or if she can do it locally and have results transferred. Her consult at V'bilt is next Thursday. Local doc can't do the kidney check until week after next at the earliest.

I appreciate any guidance - we are very confused. It's been a long time since her positive FISH (she's had two rounds of BCG and BCG with the extra stuff since). I hate to delay too much.

Kathleen