Mike...no surgery date yet.
Dr. Bochner is waiting for the path reports from MSK to come back.
I sent them a week ago but unfortunately, pathology did not have time to review them ready in time for our appt in NYC on the 16th.
Dr. Bochner first wants to make certain that Sloan pathology dept feels it is conclusine that the tumour was invasive. If it is invasive, he wants my husband to receive three months of chemo, with a month of rest to recover after chemo, then to follow with surgery.
If it is certain there was no muscle involvement, they will remove the bladder right away.
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.
I am happy to report after much research and the incredible help from Patricia here at ABLCS...we finally found our surgeon. Dr. Bochner in NY is it!
My husband (the BC patient) and I have learned so much on this forum since newly diagnosed on May 6th.
I can probably recite the steps we have taken in my sleep. I have learned that one of the most imperative steps in the process of Bladder Cancer is to never cut your steps short.
Locating the TOP NOTCH surgeons and Hospitals is IMPERATIVE. Besides that, maintaining a daily notebook listing everyone you talk to..what procedures were done...when, where and what was said is essential to helping you find your way amidst the overwhelming news and information that comes along with being diagnosed with Bladder Cancer.
We began with a local urologist. He did the cystoscopy and TURBT on my husband. Then we sought out local surgeons with hopes that we would not have to be inconvenienced by leaving the state. I can tell all the newly diagnosed... that after taking the trip out of state to NYC and entering a facility that is known for the top notch surgeons ...there is a vast, and I reiterate, a vast difference, in what you will find regarding treatment and care.
We prepared a list of about 40 typed questions which I will gladly share with anyone here, if interested. The PA who first saw my husband before Dr. Bochner arrived, commented how she thought the questions were very good. She thought everyone should bring a list of thorough questions and be certain to have them answered. Our surgeon, Dr. Bochner took his time and answered each and every question. As busy a surgeon as he is, one would have thought we were his only patients. That is how he made us feel with regard to the care, concern and time that he took with us. That is the kind of surgeon everyone needs to have!
It has been a rough road with all of the research...phone calls, emails, picking up slides..doctor's appointments...etc...but nothing brings a better sense of confidence and relief than to know when you have found the BEST!
Thank you for listening. I am here to offer assistance to anyone who would like to know the detailed steps that we took in order to get us to the top surgeon, where we needed to be. Just post your questions...and I will gladly try to answer. I am happy to share our list of questions as well. You all helped me so much...now it is my turn!