9 days and counting, ?? from my wife

I would love for you to post the Dr.'s name to be sure that no one goes to him that reads about him first!

I can't beleive that surgery was even attempted when they already saw that it spread!! That is a HUGE mistake! I am relatively new to this but from all I have read if the cancer is Metastatic, surgery is no longer an option???Am I wrong? If he is too busy to talk I suggest requesting every medical record from him and the hospital, and holding on to it. You may want to persue this at a later date...Malpractice....Malpractice...Malpractice....

Peggy here - I'll try to stick to the facts. The following is a timeline of events for Marcus's saga.

***late May - what was thought to be pain from a kidney stone turned out to be bladder cancer. Turp unable to remove it all so bladder removal recommended. Bone scan ok and CT looked good except for a dark spot which they said was probably scaring. Tucson couldn't get him in to even consult until end of June
***June - drove to U of Iowa from Utah because the head of urology said he'd see us asap (a friend set us up). During a physical exam after consultation he said he could feel the cancer outside the bladder. He ordered a MRI with contrast (coil) which showed nothing of great concern when they did the preliminary reading immediately after the test. The next morning we learned that was false hope and that the cancer had spread to the pelvic area and the nodes were enhanced. chemo recommended
***June chemo began
***end of August, chemo over,
***Sept 6th tucson doctor consultation, CT ordered
***Sept, i think a week later, CT done and (apparently) nothing of concern
***Oct 9 another appointment in Tucson - I called and asked if they could schedule surgery before the appointment but they said no - another consultation had to occur before he would schedule. I was frustrated and upset.
***Mid Oct. Marcus feeling pain. I called doc in tucson and requested the test that had been done in Iowa to be able to compare apples to apples but was told we'd have to have another appointment just to request the test. After several calls was told no test would be ordered.
***Oct. - week before surgery, Marcus called doc with a question but call was never returned.
***Halloween disaster. He said they worked for over 3 hours but couldn't take anything because it was too dangerous. they did the diversion. When I told the doctor I didn't understand why he wouldn't order the test, he pretty much dismissed me. We are pretty much done with him.....

Next - we'll be in Flagstaff for PET and CT but won't need another bone scan since he had one the day before surgery.

So, that's the story. I try not to be angry, but it creeps in. Marcus has always been a remarkable man with much physical and inner strength. I am sick that I didn't insist (more) strongly about the test. I will voice my concerns again - the doctor is simply too busy to take care of his patients.
Feedback and suggestions welcome.

Peggy,

I really wasn't going to ask the "why did they open him up, and then find the spread question", but the more I think about it I think we should discuss this more here. Maybe not for Marcus' sake, but to make sure others can get all testing done PRIOR to surgery, as to avoid problems like this. Who screwed up? He should have had the bone, and CT Scans prior to surgery! I cannot believe they put him through that. It is bad enough having to recover from surgery, and the chance of infection etc, etc, etc...But to now deal with waiting a 6 weeks (is is six weeks) before the other treatments can be given! He needs to get his strength back to go through this next round, CHemo & Rad. are tough exhausting roads! They really added time, and weakness to that unnecessarily. Have you talked with the Dr.'s? What was their explanation? Where did it spread to? I do understand that a diagnosis is a diagnosis, but that just seems like a maiming surgery with his prognosis. Is there anything you could recommend that others do to avoid a situation like this from happening again? I am so mad for you. I hope you get some answers that make sense...

Karen

Peggy i'm so sorry...what did they do...open him up and then close him back up again?
I just don't understand with all the prior scans they didn't know this? Maybe Wendy can shed some light. Pat
Ok i just read your post on another site and you state he was given an Indiana Pouch but they left the diseased bladder in tact?......Now i'm really confused..

Hi Marcus,

There is a 'survival guide' on what to expect while in the hospital and post-op for Indiana pouch-ers. It was written by a woman, but I bet there are still useful tips for men as well, have a look:
blcwebcafe.org/hospitalsurvivalguide.asp
There are a few other pages that might be helfpul on the main site, if you haven't been over there yet.

I wish you a cosy ride...be careful because seat belts are a drag post-op. You should have the hang of your new plumbing by then, maybe be prepared for the occasional leak if you drive over bumps.

Take care,
Wendy

Hello caring folks at webcafe. this is Peggy, Marcus's wife - I posted on another part of this site but thought I'd give an update here as well. Marcus had surgery on Halloween day in Tucson. Unfortunately they were unable to take his bladder and prostrate because the cancer has spread. We'll be in Tucson for another 6 days then will head for Flagstaff for CT and PET to restage and prepare for radiation with more chemo to hopefully buy a year or more. Not what we bargained for... Every Day is A Gift (EDAG) Peggy