Salvage cystectomy

Can't offer any knowledge, just sending you a hug. Denby

Hi from France,

You are going through a terrible situation, and all I can offer you is my compassion and my prayers.
As a doctor (neither a surgeon nor an oncologist), here are a few thoughts:
-your husband's case should be discussed not only with surgeons but also with oncologists (and probably radiotherapists). The nephrostomy through which the treatment was started is essential. We don't know if it will help to recover kidney function, but it will prevent a worsening.

-depending on whether the imaging shows only local progression of the tumour or also distant progression, the proposed treatment will undoubtedly be different.

- many decisions also depend on the type of tumour (determined by the TURBT performed prior to treatment) and your husband's age and physical condition.

I hope you are surrounded by close friends and a loving family.
Remain hopeful

Catherine

Thankyou Catherine,we start each day with hope. We do know that the retroperitoneal lymph nodes have compressed the ureters and that the pelvic lymph nodes are involved too. The original diagnosis was a large anterior solid tumour but they never said how big,they said that treatment was aimed at cure,but as I said that hasn't been successful. He's in alot of pain and hasn't left the house this year except to go to appointments or admission to hospital. I think the lung scarring he has is playing a big part in the outcome too. He's 67 years old and never failed a thing till.this time last year when he started bleeding heavy with clot retention. 

Whatever the diagnosis, your husband needs pain relief. Contact the doctors looking after him. Establish a dialogue to obtain as much information as possible and get the best possible care.Suffering is devastating. In 2024 there are so many ways to combat it...

Thankyou,we have had Joanne his macmillan nurse round and she has been fantastic organising stronger pain relief and everything else he needs.We are hoping we get a call to go meet his consultants this week as we need to know one way or the other what is happening.

I'm happy for you that you've been able to find help. There's nothing worse than feeling abandoned in the face of illness.
I assure you of my prayers