Hi there, I’m looking for some advice or for someone to point me in the right direction please.
my story is a bit long winded and ongoing. 17cm by 26cm by 11cm stage 3 kidney cancer tumour found Feb 2023 and removed April 2023 along with the kidney. At the same time they found my other kidneys ureter was damaged by endometriosis which I am now being treated to through gynae. To allow this kidney to work I need regular - every 9 month - kidney stent changes under general anesthetic. My last stent change was yesterday.
my consultant and surgeon suggested the option of a bladder realignment operation. He said this was “not an insignificant operation” and would put more strain on my remaining kidney but would stop the need for regular stent changes.
i was looking to connect with others who may have had the operation to gain more insight into it. I have challenges with gynae where the only option left would be surgery too so I am trying to avoid any more surgery if at all possible but feel I need to find out a bit more about it all.
I'd value any feedback from anyone who has had this.....what was surgery and recovery like? Did it put more pressure on your kidney?
Many thanks in advance,
Kind regards,
Laura
Hi Laura,
I don't have any knowledge at all about this procedure, but just wanted to come and say hello and welcome to the forums. 
I'm so sorry you are going through all this. It's a lot to cope with. You sound pretty strong as you make your way on this journey, but it's a tough ride.
Reading your quandary, my instinct is to say that it's balancing the stress of the surgery, with the discomfort and stress of the stent being changed every 9 months. You are already undergoing GA every nine months, which is always a potential risk. The alternative seems to be that you undergo one surgery that will hopefully eliminate this nine-monthly surgery to replace the stent.
You are wise to research this as fully as you can, before making that decision. Neither option is pleasant, but armed with lots of information and hopefully some people who have already had this done, or not, and can share their experiences, you are better informed to make that choice for you.
I'm wondering if this even comes within the remit of the kidney cancer forum? I don't know enough about what comes under which banner, but would it be worth also reaching out to a bladder cancer forum, or a urology forum (not sure if we have the latter on here but there are lots of forums so it might be worth searching them all?) - your conditions seem to overlap a bit and I think there are many people on many forums who also have overlap in their conditions.
It's so hard to get good info by googling, as every place you look seems to tell you something different and then you end up trying to piece together a large jigsaw of info. Talking with people who have had a similar or maybe even the same experience, is more reassuring and everyone I've found so far, despite all of us being different from anyone else, is happy to share their own experience and although you may still find you are piecing together a jigsaw, it's a much more comforting way to do so.
Wishing you the best, and sending you lots of hugs
Thanks so much for taking the time to reply.
It really is a tricky one.....going for the main op means putting more stress on my only kidney which is my really big worry to be honest. My consultant has been quite clear about this but then again stent changes regularly is affecting both my bladder and my kidney so it's a really tough "decision".
I had taken advice and been advised to post on this forum but you are right, it really does cross over a few. I've also posted on the bladder cancer forum in the hope that someone has some advice to share.
My last stent change was on Monday and i'm still suffering with the pains, probably amplified as i amnt the most patient patient. Being still in my 40s it's hard to think i may be going through this another 30 times but then taking a chance may mean more major surgery down the line re kidney transplant (if possible). It's such a horrible position to be in. If only crystal balls existed.
Thanks again for taking the time to comment and for your best wishes.
Hope you are keeping well. 
You are in between a rock and a hard place, effectively. 
I hope you can get some views from people who are/have been in a similar position.
I feel so blessed to have got to 62 before my first cancer. Was completely healthy all my life until then. I am recovering from a partial nephrectomy. First cancer was two years ago and an early stage endometrial. It really brings it home to me just how different we all are - some get to 80 and have no health problems, others have major health problems decades earlier than that.
You sound so upbeat and positive despite what you are going through, and whatever you end up opting to do, I feel sure you will come through it with strength and be able to get on with your life.
(I am the most impatient patient you could ever meet!! I am extremely patient with other people and with most other things in life, but when I'm the patient I am a nightmare!!)
