I'm also a data-driven guy in pretty much the same leaky (pun intended) boat. I haven't systematically searched for such a list but I have been doing a lot of reading and thinking.I found this recent article informative: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4870512/ I'd be interested to know how your thinking on this has evolved over the month+ since you posted.
My analysis on this is pretty simple right now: I'm pretty young (nearing 55) and otherwise healthy. So for selecting among the diversion options (to the extent the doctors don't identify some patient-specific consideration that limits the medically sound options) I'm going to discount short-term issues (length of operation, near-term incontinence, habituation to change, and the like) and focus on what will work best in the long run, hoping I have one.
So for me the driving issue is (a) the ability with bladder reconstruction and urethral voiding, post-transition and if everything is working well, to be free of dependence on having to have medical devices on body or at hand at all times, vs (b) the increased sleep interruption, waste reabsorbtion, and potential need for intermittent self-catheterization that inherently come with an internal reservoir. So far the prospect of (b) is looking manageable to me (especially as much of the sleep interruption comes with age regardless of diversion option), and internal-reservoir-with-stoma pouch options give up much of the (a) upside without proportionately reducing the (b) downside. So I'm hoping bladder reconstruction will be available to me.
But the more I read, here and elsewhere, I'm feeling increasingly comfortable that these are all good options. At least compared to the alternative, under which no there's no urine to divert. :|
I had RC surgery 2 1/2 years ago. I am very fortunate to have a surgeon who is highly experienced in RC surgeries and robotic surgery using the DiVinci equipment. I chose to have the ileal conduit for several reasons : 1) it was the surgery that my surgeon recommended based on his extensive knowledge of my bladder cancer history, my age, my work, etc. 2) I did not want to deal with catheters and mucus (personal aversion)). 3) I felt confident that I could adapt to an external bag readily 4) the recovery period was described by my surgeon and my internal medicine doctor as being a shorter timeframe.
In other words, it is a personal decision that should be driven by your lifestyle, your general health, goals that would make you feel that a successful outcome was achieved and feedback from others on their personal experience.
I am very satisfied that my choice of diversion allowed me to meet my personal goals. I am happy today that I cannot think of any limitations on my activities because of my choice. I'm not going to lie to you though. Learning how to use the bags, and experimenting with different options to find something that would stay on more than 4 hours without leaking was Extremely frustrating and depressing. But those days passed quickly and by the end of the first month I was changing the bags myself and having them stay on with no leaks. I never go anywhere without a "go bag" in hand with supplies for changing bags and clothes. I sleep with my bag attached to a jug so there is no disruption at night to empty my diversion as there are with other choices.
Find a good wound and ostomy care (WOC) nurse or PA who is experienced with urologic ostomies. Many have more experience with colon diversions which have their own unique challenges. They will be invaluable in teaching you how to manage your diversion and your external equipment if you choose ileal conduit.
Good luck as you make your decision. I don't think there are any wrong choices, but learn enough about each choice to weigh it against the way you live your life.
Yes, I have seen the material at Cleveland Clinic.org That is some of the best I have found so far, and the only one that really lays the pros and cons out for each option.
The other best source of info for these diversion/"replacement" options are the Fact Sheets and "Practical Questions And Answers" from bladder cancer survivors found at the Bladder Cancer Advocacy Network, at http://www.bcan.org/learn/treating-bladder-cancer/.
IMHO it is the best summary discussion of the various diversion types.
The answers to a lot of the questions which you have posed, however, are "it depends." It is possible to have any of the diversions and have minimal issues. It is also possible to have major problems after any of them. A lot depends on the skill of the surgeon. You want to have a surgeon who does MANY of the type that you hope to have. Five or ten a year is NOT a lot. You want someone who has done hundreds and has already run into the problems that come up. A lot of urologists tout the DaVinci device...which does robotic surgery so that the incisions are much smaller than with conventional surgery. IF you have a surgeon who is very experienced with robotic surgery, that is great. If he/she was taught by a salesman from the manufacturer, not so much (and believe me, that is how it is sometimes done). I have a urologist-friend who spent a year and a half at the Cleveland Clinic in an advanced fellowship to learn the technique. Bottom line...I would rather have traditional surgery than robotic with someone who is not EXPERIENCED. And it goes without saying, I would want traditional surgery with a very experienced surgeon also.
Of course you will discuss these issues with your surgeon candidates. How candid they are in their discussion would be another major factor in a choice both of surgeon and diversion.
Another major factor is the health and determination of the patient. If you are in good health other than the bladder cancer and are someone who can handle a totally new situation and the challenges it faces, you might be a good candidate for a neobladder. If you discourage easily, probably not.
I am sure that several others will chime in on this subject. I have NOT had to have a radical cystectomy, but know lots of people who have and have listened to a lot of their comments.
Wishing you all the best....
Diagnosis 2-08 Small papillary TCC; CIS
BCG; BCG maintenance
Vice-President, American Bladder Cancer Society
I have been diagnosed with aggressive, high-grade muscle invasive bladder cancer. After the initial cytoscopic resection to remove the two visible bladder tumors, I have started chemotherapy. The chemo is "dose dense MVAC".
I accept that my bladder will be removed after I recover from chemo, as has been recommended for my situation by 3 urologists and 1 oncologist.
The big question facing me is what surgical option I choose to "replace" bladder function. I believe there are essentially 3 options - 1) ileal conduit (ileostomy), Indiana Pouch, and neo-bladder. I believe that the ileal conduit is both the simplest surgical option and also what may occur regardless if the surgery determines that the other(s) will not work.
I have until about the end of chemotherapy to make this decision; this will be about 5-7 weeks, depending upon how many cycles of chemo I do.
I am a data driven engineer, and I'm used to developing decision criteria and then comparing pros and cons to reach a decision.
I'm done some searching online, but have not yet found what I consider to be a helpful summary or description of what would be the appropriate criteria to make this decision.
Criteria on my mind include things like:
2. Potential for loss of sexual function
3. Need to catheterize
4. Mucous issue
5. Surgery time/complexity
6. Body image impacts
7. Ileostomy bag to manage
8. Need to wear urethral catheter after surgery
9. Impacts to activity
10. Time to recover from surgery
11. Potential for post-surgery complications
12. Potential impacts to metabolism
13. General satisfaction
I would appreciate your thoughts or references to resources that might address appropriate decision criteria.
Thanks for your help, and best wishes to all posting here.