Welcome to the club. We've been where you are and have come or are coming through it. Lots of support and information here for you and your husband. Best wishes,
Latestart
(operated on for muscle-invasive bladder cancer in January 2023)
Hi - Im sorry about your husband’s diagnosis but welcome to this lovely group. You can ask anything and you’ll receive the best responses from this very supportive and friendly gang.
I’m relatively new here and have just had my turbt 16 days ago. I‘m now waiting for my follow up consultation. I have had such wonderful support and reassurances here.
I’m so glad I found this group I’m sure you’ll feel the same.
The best of luck moving forward with your husband’s treatment. Stay in touch we’re all here for you both. Nikki x
Hi Ellen,Welcome to our friendly group.I hope you will find it helpful and supportive.Please ask questions if you have any.We are all here to help you and your husband.Jane x
Welcome Ellen, sorry to read about your husband I don't have muscle invasive BC but I'm sure someone with lots of experience will be along to answers your questions don't be afraid to ask no matter how trivial it may seem to you there is no judgment here only love and support. Love Lynn
Hi Ellen, just joined too as diagnosed with Muscle Invasive G3 bladder cancer last week. Had a turbt and a 4cm tumour removed few weeks back. I am 57 and facing the choice of a radical cystectomy with Stoma or going the neo bladder route. Sorta got 48 hours to choose! I have no idea what to choose at this stage however, having just spent the last few hours scrolling through all the chats on here, I am very grateful to all those who have posted. Best wishes to all. K
Hi Kalle,Welcome to the group.I hope you will find it helpful here.Good luck with your decision.I wasn’t suitable for neo bladder but did write out the pros and cons of neo bladder and stoma before seeing the surgeon.We can answer any questions you may have and support you through.Jane x
i went the stoma route as it was tried and tested technology (old-fashioned?) that I thought I could handle - after all so many others do.
What put me off Neobladder was the need to 'train' the new bladder made from my intestine (to expand it gradually to hold more urine) as well as the possibility of more leaks while I did that plus in some cases using a catheter to help empty it.
I was 69 when i had to choose and not sure how the neobladder route would fit my personality - fairly confident but not wanting to face 'fiddling around' with my innards. I also thought my husband would be worried by leaks and catheters.
Of course, given a stoma bag is attached by adhesive to one's skin, it will leak too from time to time, especially at first when I hadn't learnt to attach it properly and when I hadn't got a bag belt that helped it keep attached (I have quite a flabby stomach having lost a lot of weight some years ago so there is a rounded bit of me to attach to rather than a flat stomach).
I have since talked with others who have had the neobladder and been pleased and have successfully managed it. But I know that I made the right decision for me.
I would suggest you talk to the hospital's stoma nurses and see what they say. They will support you either way after the op. It's a tough operation but they are very good at doing it these days.
Late start I am very grateful for your run down and thoughts, it is really appreciated. I actually just found out from my mother that one of my uncles had a stoma for 15 years+ which I never knew! I will keep researching as I am swinging from one decision to the other and trying to work out the pros and cons and how that works best. Not easy is it! Hopefully your comments are helpful to Ellen and her Husband too as I see they are new to this situation too.
Hi Kalle,Being able to sleep through the night is the bonus of a stoma over a neo bladder.This is especially beneficial post op when you will feel exhausted to begin with.Have you seen the surgeon yet ?
