Appendix 2 Questions for Dr. Carroll


1.) Radical cystectomy
a.) How many have you done?
b.) What is your success rate?
c.) Did any patients have chemotherapy? What is the difference between adjuvant chemotherapy and non-adjuvant chemotherapy?
d.) I know about depositing blood. How is this done?
e.) What are the pre-operative considerations? Legal? Financial? Medical?
f.) What do I do on the day of the operation?
g.) How long is the surgery? Will there be other physicians in the operating room? Would you also remove the gall stone and gall bladder?
h.) Tell us the details about the neobladder. How is it constructed? What are the dangers of breaking up the bowel?
i.) What complications could arise during construction of the neobladder?
j.) Tell us the detail about the removal of the urinary bladder. What are the dangers of carcinoma spillage into other parts of the body from the removal of the bladder?
k.) What complications can occur during cystectomy?
l.) How long do you expect I’d be in the recovery room? Will I need intensive care?
m.) How long is the hospital stay? Will I have to be moved to a nursing home?
n.) When I get home, will I be able to navigate steps fairly efficiently?
o.) How long will I be laid up?
p.) Will I be able to sit up and use the computer? Will I be able to compute from bed? Should I apply for long term disability from my company?
q.) What follow up treatment will be needed?
r.) What are the mechanics of using the neobladder?
s.) How long do you think it would take for me to return to a normal live?
t.) If all goes well, would I have a normal life expectancy?
u.) What about metastases? How would we monitor for them? Both of my parents and my son had substantial metastases. Why would I be any different?
v.) What else should I know about the surgery, hospital stay, recovery period, and long term prognosis?
2.) Shipley
a.) Would you be willing and able to manage and/or participate in the Shipley protocol with me? If not, who would you recommend? If so, who would you have on your team?
b.) What are the chances that I would need radical cystectomy after all the chemotherapy and radiation therapy?
3.) Watch and wait
a.) How long would I have to live?
b.) How frequently would I have to have cystoscopy to monitor the bladder?
c.) Would you be willing to take me on for this type of program? I’m looking for spontaneous healing, and I’d like to buy some time.
d.) How risky is this program?
4.) Would you be willing to take my case to the UC tumor board tomorrow?