Information overload or not enough?

[rcs2024]

Hi,

I am 64 yearold male with stage 2 (muscle invasive) bladder cancer, and am scheduled for a radical cystectomy December 5th.

I am completing my 3rd cycle of chemo this Saturday. There may be a modified 4th cycle, but they don’t want to push the surgery date to 2025.

I have chosen an ileal conduit (Urostomy).

Of course I have been googling and using YouTube, but am really unsure if I’m getting correct or relevant information?

 

Specifically:

Recovery time expectations.

Issues during recovery.

Two or one piece ostomy bag.

Really any good information I can read from surgery to home.

 

Thank you for any assistance!

 

[marilouc]

Hi rcs2024,

My name is Marilou Cameron and I am the Bilingual Program Support Coordinator at Bladder Cancer Canada. I am in charge of our One2One Peer Support Program, which allows you to connect with specially trained volunteers who have also been affected by bladder cancer. These volunteers can offer their unique perspective and help answer some questions you have about the ileal conduit. Please feel free to send me an e-mail at marilouc@bladdercancercanada.org and I will be happy to connect you with a volunteer that most closely matches with your situation.

All the best,

- Marilou (marilouc@bladdercancercanada.org)

[marysue]

Hi rcs2024:

I strongly recommend that you take marilouc’s suggestion of connecting with a peer support volunteer who has had the urostomy surgery.  You can also download online a copy of the patient handbook on radical cystectomy surgery which will give you some basics.  If you want a hardcopy just call Bladder Cancer Canada and ask for them to mail you one.  Best of luck with the rest of your treatments and upcoming surgery.  ((((HUGS))))

[Nightingale]

Hi rcs2024,

I don’t mean to create doubt in your mind, but your decision to go with urostomy; was that based on YouTube and searching on the Internet?  I would take Marylouc’s suggestion to speak with a peer-to-peer Support Volunteers who have experience with all three types – Urostomy, Indiana Pouch and Neo Bladder.  Also, keep in mind that depending on where you’re located and the urology team that will be supporting you, that will also have an impact on your decision.

The good news is that we have Peer Support Volunteers who have experience with all three types of diversions.  I’m suggesting this, because you still have time to get all the information before you lock down on your decision.

Lastly, in my monthly Support Group that is coming up on Thurs Nov 28th, I have a gentleman joining who has experience with Urostomy.  He is often asked by the local hospital to talk with patients before their surgery.  He is also involved with talking to students at McMaster University’s iBioMed faculty and lastly he has been involved in training Personal Support Care Workers.  Let me know if you’re interested in joining and I’ll include you in my blind copy list.

My Best,

P.S., I am a Key Master and Moderator in this Forum.

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