I was so close to the 5 year all clear - now waiting again

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My history: (I was in this form in 2018 but can't find my log in!)

2018 - Bladder Cancer - 2 x TURBT - multiple tumours removed - one year BCG treatment.

Series of clear cystoscopys for just under 5 years.

Oct 23 - reduced kidney function identified/ultrasound/CT scan - kidney not emptying

Dec 23 - Cystoscopy to investigate blocked ureter tube, couldn't see ureter opening as bladder lining abnormal and thickened - TURBT to remove - awaiting biopsy. (kidney still blocked!) 

So I've spent Christmas with post TURBT discomfort, Dr said high possibility that this is a recurrence, I'm terrified. I know I'll need another anaesthetic soon to sort out further stuff even if just for kidney.

40's Mum of 3, working and just too busy for this :-(

To add to this I had my hip and femur shattered by a horse Dec 2022, 11 days in hospital, all pinned but have non-union (bones not joining back together). Have been in pain and discomfort with this for the past year (next x-ray Feb 24) - I'm just exhausted and don't feel strong enough for cancer again.

  • Hi PurpleSparkle,I’m sorry to hear you are having such a rotten time.Have you got stents in ? I hope that if this is a recurrence it can be sorted promptly.It is a lot to go through.Let us know how you get on.Best wishes Jane 

  • Thanks so much for your reply  , no stent at the moment, could have woken up with one if they had found the opening to the Ureter but they couldn't see it this time, so they kidney is still blocked. This has been by far my most uncomfortable TURBT recovery wise, still so stingy, I'll keep drinking the water!!!

  • Hugs,I hope they can get you back soon and get the kidneys functioning better.Love Jane 

  • Thinking of you. I hope all your treatment goes smoothly. Garviv 

  • I am surprised they have not inserted a Nephrostomy tube. I got diagnosed with Advanced BC and the Tumour is blocking my left Kidney and first thing they did was to give me a Nephrostomy as they told me that my Kidney would be at risk if they could not let it drain.

    Hope you recover from the Turbt soon 

  • Hmm interesting  , thanks. I'm hoping they don't leave it too much longer! They said biopsy results should be 2-3 weeks then they will make a new plan.

  • Hello @PurpleSparkle so sorry you're going through this,after such a traumatic year. I`m not surprised you are exhausted. I am wife of a newly diagnosed BC patient with 2 older children and I'm exhausted by the worry, care and extra chores in the house that OH simply isn,t strong enough for her post TURBT. I hope you have family and friends to lean on at this time! Don't be proud, get support. Sending you hugs .

  • Stay strong you beat it once YOU WILL beat it again .

  • I pray everything goes well for you x

  • Two weeks since my TURBT (19th Dec). Worst TURBT recovery yet, makes me wonder just how much of my bladder lining they scraped away. Dr said it looked as if it had been thickening for sometime. Still needing to drink lots to stop the stingy wee. Up in the night as well. Have not returned to work yet.

    No biopsy results yet

    No outpatients appointment date through (said 4 weeks)

    No news on kidney function scan

    Up and awake in the night worried about it all Sleeping