Nephrostomy tubes

Hi AM123 . Sorry I can't help as no experience of nephrostomy tubes, but just let me welcome you to the group. Hopefully, someone will be along with some help. Best wishes.

I wish I could help & explain your dads pain, it may be due to weightloss, your dads urology team at Radiotherapy interventional should help and put your dads mind at rest,

My husband has Bladder Cancer stage 4 & CKD & has had bilateral Nephrostomies since September 2020 they are excanged every 3 months and I do the dressings every week sometimes the area inflamed, when he first had them inserted there were occasions they didn’t drain,every now and again he has pain from the site he puts it downto how he was sitting or laying & tube pushing into kidney, recently one tube came away from his body panic we were assured by GP & 111 to go back to hospital in the morning for reinserrion alls well, wishing you all the best. 

Thank you for your response, apologies I’ve had difficulty logging back in here for some reason. 
So your husband doesn’t have crippling pain with them? I’m hoping they can do something for my dad. His frustration at the moment is not being able to do anything except lie there. Even hospital appointments are becoming a problem now as he has to lie across the back seat of the car and then sitting in a wheelchair for any length of time is agonising for him. 

Hi AM123. We feel for you & your dad,in addition to his diagnosis of spinal mets & possibility of bladder/prostate tumours,he is in agonising pain have urologist said how long he would have Nephrostomies for? Hopefully when he sees the Radiology interventional docs,they will be able to see on the scans why he is in so much pain. 

my husband was diagnosed with bladder,Prostate,lung cancer diagnosed 7 years ago when his Nephrostomies were inserted 2 1/2 years ago he was always told to drink 3ltrs a day which definitely helps. 

hopefully you get an appointment soon and docs can help, no one should be in that amount of agonising pain. 
wish you well take care x

He was told he’d need them for life but tbh it’s all been a bit of a mess because that was when it was casually mentioned that he had advanced cancer, despite cancer never once being mentioned before (we were told it was a urinary stricture). We were also told there was nothing they could do and that it was “best to let nature take its course”. This was back in September and now he’s just started Denosumab for the mets and yesterday he got a phone call asking him to come in and sign consent forms for chemo, even though chemo was never mentioned. 
The palliative care consultant is visiting this afternoon and she said she wanted to talk about the nephrostomy tubes, so hopefully we will find out a bit more then. 
It’s so hard to reconcile that only last June we were all on holiday in Greece, walking around, living life as normal and within 3 months he was told he was a lost cause and is now virtually bed bound. 

So the palliative care team came. They didn’t mention anything about the tubes, rather that dad’s histology reports are back and unfortunately it’s small cell carcinoma, which is extremely rare in bladder cancer and very aggressive. Meaning prognosis is not at all good. Months. 

I’m so sorry that the news is not good.I really hope that the team will be able to get your dad’s pain controlled.Love Jane x

We are so sorry to hear the news, really hope his team can help to  control his pain, love M x

Hi there. My husband was diagnosed with small cell bladder cancer in January this year. No symptoms at all before December 2022 when he had blood in his urine. He was seen very quickly and had initial TURBT in Jan - this led to diagnosis. He had some problems with recurring infection and ended up having internal stents and then bilateral nephrostomies. Since then he's been OK and able to get on with chemo. He has had no pain with the nephrostomies and has got quite used to them. 

We've been told at last review that there is no sign of cancer elsewhere. He's been treated with carboplatin and etoposide which is same as for small cell lung cancer (which is where small cell is more commonly found).

He has 1 more chemo and then 4 weeks of daily radiotherapy. We've also been told it's an aggressive cancer which can and probably will come back. 

I've seen some hopeful posts around immunotherapy but this does seem dependent on the type of small cell cancer.

My husband is 66 and prior to this had never been in hospital before. Like your Dad, all was normal until mid December. 

Yours is the first post I've seen about small cell.bladder cancer. It's very rare as you know.

I'm sorry your Dad's in so much pain and I do hope things get easier for him. 

Di x

As you mentioned DigsySE18, small cell is rare. I have small cell neuroendocrine bladder cancer, T4 N1 M0, although the M0 had initially been M1, but a medical discussion pushed it back! I had a nephrostomy on my right kidney, which, although very useful and not bothersome, was a real pain. I hated it and had a stent pushed through from the kidney to my bladder on Friday 28th July. 

It's weird, timeframes. Before April, I was a "nett contributer", having never needed personally the NHS, since then, 2 chemo down, TURBT, nephrostomy, etc, I feel like a regular. It happens so quickly. I had micro blood (not visible) and presented myself to the Dr thinking, well, of an age, maybe my prostate is beginning to change. Not, oh, bladder cancer. 

Re your Dad and his pain, the only pain I had with the nephrostomy, was when it was originally put in. Towards the end of the procedure, it felt like the tube was being smashed through my kidney. I winced, the tube was moved and the pain went. If there is long term pain, raise it repeatedly until you get an answer you are content with or a plan to manage the pain. I am aware that cancer in bones is very painful, that too can be managed. Your father shouldn't be dealing with pain. That's just not right.

Keep on keeping on. Look to get fluids and food into pops when you can.

Good luck

Simon