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My father has been fighting bladder cancer for 35+ years. His last visit to the hospital to have tumors removed has led to the discovery that they have begun to grow into the lining of his bladder, and his urologist has recommended a cystectomy with ileal conduit. I’m wondering if anyone has a story that I could share with my father. He is very nervous about the procedure, and everything before, during, and after that he will endure.
Thanks so much.Hi MFitch:
Welcome to Bladder Cancer Canada but sorry to learn of your father’s diagnosis. I haven’t had to go down the road of bladder removal but I’m sure that you will hear from folks before too long.
The other thing that you can do is call the Bladder Cancer Canada toll free number, leave a message asking to be connected with a Patient Volunteer that has had the surgery. Someone will get back to you and help you with getting connected so your father can ask questions about the surgery.
If you haven’t done so already, you can also go on the link Newly Diagnosed and download for free the patient guidebook on muscle invasive bladder cancer. It contains information about muscle invasive bladder cancer and the different urinary diversions that is easy to read and understand. Hope my suggestions help a bit. ((((HUGS))))
Thank you both for your responses. A cystectomy with ileal conduit was recommended so that he wouldn’t have to self-catheter. He is the type who worries about EVERYTHING, ALL the time! Unfortunately he does not have access to a computer, so I’m trying to get as much information as possible. rock2013 – I’m sure I’ll have more questions as I learn more, but I believe the main concern is recovery and QoL afterwards. He doesn’t do much, a very quiet, basic life of a retiree. So, recovery immediately after surgery, recovery after returning home, infections or issues. Where exactly is the placement of the bag? Is there a larger bag for night time? Right now we are going through CT and bone scans to be sure the cancer hasn’t spread. I’ve been constantly reminding him that this could be a really good thing – he could be cancer free for the first time in 35+ years, and he won’t have to get up to pee 10 times a night! He is really viewing this as an ending rather than a beginning, so happy stories are what I need. Thank you again.
My bladder cancer was stage 3 high grade and muscle invasive. Fortunately it did not reach the bones. Bladder, prostate and 21 lymph nodes were removed. 4 months of chemo before surgery. Surgery took 5 hours and 20 minutes. 6 days in hospital and 5 weeks recovery. 5 weeks of radiation. After 2 weeks of research, I chose the Illial conduit (external pouch).
I was 72 years old, I am retired and I do everything I did before. I connect to the overnight bag and I sleep 7 hours. I drink lots of water. I am happy with my choice. The neo bladder people I know have issues etc… . I suppose it might have been different choice if I would have been younger. I learned to live with the new normal. while it is a life saving surgery, they have excellent success. My bag is on the right lower abdomen. best of luck to your dad.
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