nephrostomy

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Hi All

 I am new here and hope you don't mind me asking for advice about my Dad. 

He was diagnosed back in May 2023 with Bladder Cancer he had a small part removed and then after a scan, we found out it had moved into the wall of the muscle.

He was told that he could have chemo to try and reduce the tumor, unfortunately, he then developed Coltis however we are unsure if this was caused by taking Nauproen for the pain, chemo had to be put on hold until this was cleared up. 

He then started chemo back in August and reacted to the chemo they gave him and had to go onto another type of chemo, unfortunately after 3 cycles, the doctor noticed his Neutrophils were high and had to stop chemo to look into why this was happening. 

We recently found out that to reduce these he would have to have a stent put in to drain the kidney, however, when he went to see the Consultant it was more about a nephrostomy, and would maybe just add one month to his life. We were shocked as we were told for so long he would have 5 years plus, and now we were being told he would have 3 months

My mum wrote to his consultant and in all fairness, the consultant booked him in to answer all questions, he was told that the tumor had spread and he would be looking at 9-12 months left to live even if he had this nephrostomy it might not give him more time. My dad is having time to think about what he wants to do, as he is worried about the nephrostomy and feels this would not feel this would be for him. 

I was just wondering if anyone has been in this situation and how you felt about having a nephrostomy.

Apologies for such a long message. 

  • Hi  and welcome to the group although sorry to hear of dad's situation. Not had nephrostomy myself but hopefully someone with experience will be along to help. I had muscle invasive bc and had radiotherapy treatment rather than removal. Something dad may want to ask about. Best wishes.

    Best wishes to All,   rily.

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  • I have a Nephrostomy in my left Kidney at present. As my Cancer is blocking the ureter from my kidney. It takes a little bit of getting used too but now i just treat it as the norm. You have to have it replaced every 3 months and the dressing changed every week. Make sure you get plenty of dressings in and if possible get a member of the family trained in how to change the dressing, it took a while for me to find the correct dressings that suited.

    If you dont have the Nephrostomy your Dad could be at risk of Kidney failure as that is why i had to have mine.

    The ones i use are:

    ClearFilm dressing 15cm x 20cm (Richardson Healthcare Ltd) I use 2 1/2 to 3 on each dressing change

    Dressit sterile dressing pack with medium/large gloves (Richardson Healthcare Ltd)

    Drisorb dressing pad 10cm x 20cm (Synergy Health (UK) Ltd)

    Zetuvit Plus dressing 10cm x 10cm (Paul Hartmann Ltd)

    I put the Zetuvit over the butterfly and then the Drisorb doubled over on top then the Films this is the most comfortable for me

    Hope this helps

  • Thank you so much for replying such great information, this is  what is happening to my dad right now. 

    I hope that you don't mind me asking you this, as I know Dad has so many questions:

    How does it affect normal daily tasks, can you go back to work?

    Are you able to get out and about?

    Can it leak ? 

    My Dad has been told that the tumour has grown and chemo has  not worked he was originally told he would have 9 - 12 months to live, however I pray if he had this done it would prolong his life in some way. 

    Thank you so much for your help. 

  • I was back at work in 2 weeks. I have had to change the type of trousers so that they are elasticated waist like joggers as when I wore tight trousers the movement of my body pulled the tube out. You can not go swimming or have a bath but a shower is fine. Try to get them to have the tube coming out at the bottom of the dressing and not the side as the movement when it comes out the side causes the dressing to come undone. But I am doing everything as I was before I am just more careful when doing things.

    hope this helps