Bladder cancer

A place for people affected by bladder cancer to support one another, ask questions, and share their experiences.

Nephrectomy

Rudl
Posted by

Hi I was wondering if anyone has had to have a nephrectomy due to the stents not working properly my husband has had to have one in to his back on his left hand side so now has a bag for his urine but now they are saying the right stent will not be able to be chanced and he will need a nephrectomy on his right side so will mean another bag (I think as no one has told us much but how it will work having 2) has anyone experienced this and can say how it affects your every day life and things 

Crustybladder
Posted by

Hello Rudl

I'm sorry to hear about your husband. Chemo thinned all my tubes so after surgery I had stents in both ureters. My surgeon removed the right one only to discover that it was leaking so I had a partial nephrectomy to disconnect the kidney from the ureter to allow it to heal.

So on leaving hospital, I had my urostomy pouch, a nephrostomy tube to a bag and another drain out of my lower abdomen for the fluid that had leaked inside me. 

I used leg bags for the two drains which enabled me to crack on with life albeit in a measured way. There was talk of the nephrostomy being permanent and having 6 monthly tube changes. However, my surgeon managed to reconnect my ureter after 3 months via my stoma and now I'm ok again. My one concession to the situation was to take spare pouches and a change of clothes whever I went in case of leaks (which are rare now).

Life with 2 bags is manageable, urostomy and colostomy patients have a reasonable life with 2 bags. It becomes our new normal and we do adjust in time.

I wish you both well.

CB

What if the Hokey Cokey IS what it's all about?

Rudl
Posted by

Hi cb thanks for your reply glad your nephrectomy wasn't permanent unfortunately my husband's will be as will the one he gets done in December forgot to say he has a stoma too as he had his colon removed in June before he was diagnosed with the cancer even tho we where told then that there was no signs off cancer but then told 4 weeks later that he has high grade aggressive cancer so he will actually have 3 bags come December 

Crustybladder
Posted by

Having bags is a nuisance, there's no denying it. I've concluded that survival is the better option so I've adapted my life around the medical needs.

I still go on holiday abroad, volunteer locally, garden vigorously and go boating solo though I admit it took a while for my confidence to grow back to pre bag levels.

I still have the odd moment when I curse the wretched urostomy pouch but without it I'd have been dust two years ago and before I could get hold of my pension (a big motivator!)

Talking to other patients in similar positions really helped me so I recommend you find a local support group if you believe that might help him (and you) acclimatise to the new normal.

CB

What if the Hokey Cokey IS what it's all about?

Rudl
Posted by

Hi cb thanks for that but I think ur urostomy punch is different to my husband's as I think ur comes out ur stomach my husband has a tube going into his back and his bag is attached to his leg with a little strap with a larger bag added at night at the moment its quite difficult to get our heads round it all but getting information from people like yourself that are living a normal life is great so thank you for your replys 

Crustybladder
Posted by

I did have a tube put in my back diverting urine from my right kidney to an external leg bag. I had this for three months. During this time, my left kidney was connected via a conduit/stoma to my pouch.

I know how difficult it is to understand the implications of any treatment and the lasting effects you have to live with never mind the original cancer diagnosis.

It takes some time to deal with all of this and the medical jargon so please do come to this forum if you need answers or to let off steam. 

CB

What if the Hokey Cokey IS what it's all about?

FruitShop
Posted by

Hello,

Thank you for sharing your experiences.

I am currently receiving treatment at the Queen Elizabeth Hospital, Birmingham, under the urology department. In October 2015 I was diagnosed with Bladder Cancer T3. I had a full bladder removal with a stoma made on the right side, I also had my prostate and lymph nodes removed. The cancer was showing on the left kidney urethra pipe into the bladder. 

I then had a three month course of chemotherapy at the Queen Elizabeth. In March 2016 I had my water pipe removed as a precautionary measure. I then had repeat CT scans with no reoccurrence. However, in October 2019, I had severe kidney pains due to urine being unable to pass through the eutherians to the stoma. The consultant believed there was no reoccurrence of cancer, the problem appears to be due to scar tissue in the urethras has attached to ducting.
My left and right kidney now have nephrostomy drains in with stents in both urethras, which are not working. I have now been sent home from the Queen Elizabeth Hospital for six weeks rest but I'm in extreme pain and discomfort. The consultant has said that he may have to reconstruct the stoma, but he's not keen for this to happen, saying that the first surgery I had was always the best option.
I'm looking for advice from anyone that has been in a similar situation and can share their experience with me please. I'm also looking to be put in touch with specialists / hospitals in the UK that may be able to help me.
Thank you