It’s a while since I’ve been on here, so I’ll describe my situation.
2011 I found I’d got prostate cancer. In determining if it had spread (it hadn’t) they found I’d got RCC. A partial nephrectomy followed, and then hormone treatment and radiation for the prostate issue. All was well.
2021 I had a DVT in my calf, exploring why - they found the RCC had returned - size around 45mm. The oncologists view was - we can’t remove the kidney as we’re not sure your heart would take it. Go home and enjoy life! (yes her actual words) and no treatment offered.
2023 they finally decided I should start a treatment (targeted therapy) - a form of chemo, in October. Within 3 weeks of starting this (Pazopanib) I was passing blood, clots forming and blocking up. A nephrostomy was fitted 1st December.
2024 March they removed the nephrostomy and fitted a stent (kidney to bladder) shortly after followed by a catheter as I’d blocked up. Between March and this January I’ve had 5 catheters fitted and removed - consequently bladder control is pretty much gone.
it now seems that any strain (eg lifting) can trigger internal bleeding, as can drinking coffee (if all things). So I’m stuck drinking water and doing very little - for fear I start bleeding, resulting in clots and blockage - end result yet another catheter!
Any suggestions for trying to exist better and live a normal life? I know RCC is incurable, the tumour is now 75mm in size and I have mets on my lungs, along with lesions on my liver. I’m looking for guidance and help. Though I don’t want to, I’m considering permanent catheterisation. But that has serious implications.
Hi MuttleyBC
It does sound like you've been through a lot so I can totally understand why you want suggestions on how you could live a more normal life.
I’m Anne, one of the Community Champions here on the Online Community and, although I don't have the experience you're looking for, I noticed that your post hadn't had any replies yet. Responding to you will 'bump' it back to the top of the discussion list again.
I hope other members of the group will be along soon to share their experiences with you.
"Never regret a day in your life, good days give you happiness, bad days give you experience"
