Education Topics

[Ieva]

Hi Everyone!

I am following up from the Toronto conference regarding future topics of interest –

If your doctor said to you “time to take your bladder out”, what do you want to know?

Thanks!
Ieva

[marysue]

That is a decision I hope to never have to make. However that being said I would want to know the following:

1) Why? Is this the only option left in my case?

2) Do I have the choice of diversion options? Why or why not?

3) What are the pros and cons of each? What do you feel is the best option for me in my situation?

4) What other health conditions can affect your recovery, increase your risks, quality of life if you have this surgery?

5)What is the follow-up protocol? Whom do I contact for post surgery problems and when? What kind of tests will I need and at what intervals?

6) Where can I go for help if I experience post surgery depression, sexual issues, sleep issues, support for my spouse/caregiver, need in home care services?

7) How long is the usual recovery time before resuming driving, returning to work, having sex, lifting, doing housework etc.?

8) Where do I go for needed medical supplies? How do I find out what is covered on insurance or not?

9) What kind of post op meds will I need to take? Is this permanent or temporary? Will I be able to resume taking my vitamins, herbal supplements etc. (if this applies to you)?

I’m sure that there are tons more questions out there, but for me the biggest thing would be questioning the doc to make sure that removing the bladder was the only and best option left before I’d even consider it. Even though I haven’t done it I know people that have and it is a very big surgery that can’t be undertaken lightly.

Hope this helps. Keep us posted Leva. Thanks for doing this.

[Greg]

I would want to know from the doctor:
1. How many RC operations do you do per year? (get to a major cancer centre if he or she does not do a whole bunch of them on a regular basis)
2. Is this a major cancer facility where I will be treated both before and after surgery?
3. I would insist on a frank and forthright discussion on intimacy issues and contact BCC for confirmation from someone of the same sex as to the “difficulties.”
4. Am I a candidate for bladder preservation? (only a small, select few are)
5. Can I get a survivorship care plan?

[Author]

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