Great subject ya’ll on pre-op questions. Will look forward to Cheryl’s. I saved this list from somewhere else (not my work) but, it is a great list and I saved it should I or someone else need this someday.
Some good questions to ask for those newly diagnosed with invasive bladder cancer and considering cystectomy.
Pre Op Questions
Which technique would you recommend under ideal conditions*, how many times have you done it?
If female, how many women have you operated on using this procedure?
If male, is removal of the prostate necessary? If so, what results have you had with nerve sparing procedures?
Can the first stage of a 3 piece inflatable prosthesis be implanted during the surgery – the reservoir and pump? (helps to do it then – cylinders can go in thru small incision and be connected later)
Explain exactly what you will be doing (different for Kock, Indiana, neobladder, external).
How much intestine will be used? Will it involve the terminal ileum and cecal valve? (without the cecal valve, bacteria from the large intestine can reflux into the small intestine causing diarrhea)
What results have you had re:continence after surgery. What about hypercontinence?
Can you put me in contact with other patients to talk with about the procedure? Support group? Counselling?
Can I donate blood in advance?
Are you amenable to drug resistance tests and complying with live path specimen shipment and handling procedures during/after surgery (in case chemo is required down the road)?
How long does the surgery last? How long will I be in intensive care?
What’s the average hospital stay? What is the average recovery period?
How many catheters will I wake up with, and how long will they stay in. Will there be an NG tube? For how long?
May I have the name of the anesthesiologist? (it’s a good idea to discuss things before surgery)
Does the hospital have an ET nurse or an experienced staff?
What kind of pain medication is available for me post op? How will it be administered? What kind of pain medication will I go home with? How can I counteract the side effects of pain meds? (constipation)
What kind of supplies will I need when I get home and where do I buy them?
What antibiotics will I be given?
What should I do for diarrhea? (sometimes it helps to eliminate dairy products for a few weeks)
What are some of the complications that can occur during surgery?
What are some complications that can occur after surgery?
What are some of the long-term after effects of the surgery and how would these be dealt with? (possible neuropathy, impotence)
What are the long term effects of intestines holding urine, does the body adjust?
What are the long term implications for other organs, specifically kidneys?
Can you/will you check for colorectal cancer as well?
What assurances/odds are there given the stage/grade that surgery alone will be a successful therapy?
If positive nodes or signs of mets are found, will surgery be carried out?
At my stage and grade, do I have other options? Would a clinical trial be appropriate?
Post Op Questions
How soon after surgery will the pathology report be available? Will there be any biomarkers tested such as p53, p21, Ki67?
What kind of help will I need upon return home (Home health aid? Visiting nurse?), and for approximately how long?
How long will the neobladder continue to produce mucous?
Can I resume a normal lifestyle, including activities (depends on type of surgery..No contact sports, usually)?
If no spread is found, what is your planned course for follow up after surgery?
What would be my treatment options if there are signs of spread?
If a course of chemo is required, how long after the surgery do we begin? Can I talk with folks on chemo?
If female, have them explain the instant menopause or put you in touch with someone who can. This is further complicated if chemo is required because you can’t tell the meno hot flash from a chemo hot flash…
What are your feelings on the subject of complimentary/alternative medicine and would you be amenable if I sought out such treamtent? What kind of dietary changes, if any, will I need to make?
How often should you have a specific Vitamin B12 test run? (the routine B12 catches only 75%)
Where can I order a medic-alert bracelet? This is advised for those with internal reservoirs which need intermittent catheterization. Some examples: ‘continent urinary diversion’; ‘continent urostomy must insert catheter to drain’; Continent Diversion, stoma location, cath #14, q2-3 hr; ‘continent urinary reservoir via stoma’; ‘continent urostomy needs 16 fr catheter every 4 hours’.
*A preferred technique may be agreed upon in advance as the ‘ideal’ choice, however often times a person’s anatomy can prohibit the creation of the preferred continent reservoir, and there is no real way to be sure until the surgeon looks inside.
DX 5/6/2008 TAG3 papillary tumor .5 CM in size. 2 TURBS followed by 6 instillations of BCG weekly with a second round of 6 after a 6 week wait.
When is his surgery?
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
Thank you Mike. Been a long road as you well know…but what a feeling when you know someone truly cares.
Hope all is well with you,
Cheryl
So glad to hear that Cheryl!
:)
Age 54
10/31/06 dx CIS (TisG3) non-invasive (at 47)
9/19/08 TURB/TUIP dx Invasive T2G3
10/8/08 RC neobladder(at 49)
2/15/13 T4G3N3M1 distant metastases(at 53)
9/2013 finished chemo -cancer free again
1/2014 ct scan results….distant mets
2/2014 ct result…spread to liver, kidneys, and lymph system
My opinions are my own and do not reflect the opinion of ABLCS or anyone else. I am not a doctor nor do I play one on TV.
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