2nd diagnosis

[TJW]

Good morning,

We just found out that my Dad’s cancer is back -MIBC. He finished chemo and radiation last August and just had another TURBT procedure 2 weeks ago to remove a 2-3 cm tumour. We spoke to the surgeon yesterday and our options are a radical cystecomy or monitoring and repeated TURBT procedures. My Dad is 78 and lives on his own and still works. He’s completely independent and is very worried about undergoing a large surgery and what his life would look like after the operation. He’s leaning towards not having it because of the fear of losing that independence. I was wondering if anyone here would be able to shed some light on what the recovery from the surgery is like and what the real life impact is when living without a bladder.

Thank you,

Tracey

[Donald123]

I had a radical cystectomy four years ago and had a neobladder created from my instestines. Recovery from the eight hour surgery went well with no issues. With the neobladder I have to catheterization four times daily and wear a conform catheter overnight. A bit of an inconvenience, but I was still able to golf and enjoy an otherwise normal life.

six months ago a cancerous growth was found on Mr right uriter  where it attaches to my kidney. This necessitated the insertion of a nefrostomy tube into my kidney which drain into a pouch attached to my upper leg. Again, an inconvenience but no major issues. The tube is replaced quarterly at the hospital.

I wish your father well and can assure him that things sound much worse than they actually are.

[marilouc]

Hi Tracey,

I’m sorry to hear that your father’s cancer is back.

If he would like to connect with our Peer Support Program, I would be happy to match him with volunteers to discuss the different urinary diversions. For more information on Peer Support, please visit this page: https://bladdercancercanada.org/en/patients/get-support/one2one-peer-support/ or feel free to call me at 1-866-674-8889.

All the best,

- Marilou (marilouc@bladdercancercanada.org)

[Nightingale]

Hello Tracey,

If you’ve not done so already, I would reach out to Marilou and request an opportunity to speak with a peer support volunteer for a 1:1 conversation.  If I were you, I would request to speak with a person with NEO bladder and one with the external bag.  This way you can help your dad make an informed decision.  Wishing you and your dad the very best.  Do reach out to Marilou.  She’ll take care of you and your dad.

My best,

[TJW]

Thank you all so much! This is exactly the kind of support I was looking to get for my Dad – I just wasn’t sure where to find it.❤️

I will definitely register him and set something up through Marilou.

Thank you again,

Tracey

[Author]

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