Hi everyone, I haven't contributed here for a while, as things were OK, and I had gone back to work part-time, but now I have a lot going on and not in a good way.
Quick recap - prostatectomy in December 2019, followed by hormone therapy and radiotherapy in 2020, developed lymphoedema, had radiation proctitis in Nov 2021, PSA started creeping up, had SABR radiotherapy in May 2023 for cancer signs on my lower spine.
Now it's February 2024, and there's a lot going on. Having experienced bleeding from my bladder I was referred for a cystoscopy. My oncologist thinks that this is because of more radiation damage, as recent scans didn't show any signs of soft tissue cancer anywhere. The flexible cystoscopy under local anaesthetic was unsuccessful so I had a rigid cystoscopy under general anaesthetic, and I am still recovering from that. I still have a catheter which they are due to take out next Wednesday. I'm feeling very upset by this.
On the actual cancer side, recent scans show that I still have three spots of cancer in my back, one in my spine and two in my ribs. They are all "small problems" according to my oncologist. The technical term is "oligometastatic prostate cancer" which means there are just a few metastases.
The plan is to have more SABR radiotherapy for the cancer cells in my ribs, but before that I am due to have a "cryo-ablation" procedure on the cancer in my lower spine. That will involve inserting something in my spine and then freezing the cancer cells to destroy them. That's the plan. Things have been delayed because it's taking longer than expected to recover from the urology op (the cystoscopy).
Getting stuck with a catheter of 2.5 weeks has really upset me. And of course, the catheter is uncomfortable, occasionally painful, and very restrictive, I wasn't prepared for the recovery to be taking such a long time. It feels like a setback.
I was quite excited about the prospect of the cryo-ablation, another hi-tech procedure, but now i am worried that it might be delayed again, or that it might cause more unexpected complications.
Oh, just to be clear - all my treatment has been in the NHS, and I am always amazed at how lovely everyone is despite the pressures they are all under.
Please send constructive advice and good vibes to cheer me up.
Love to all, Angus (not my real name)
Hello Angus,
Thank you for sharing, sending lots of hugs and positive vibes your way
Keep smiling tho can be difficult but gaining positive energy can help in small ways I think. Take care
Hello angusP2 As you say - all well until the bleeding. I can't help you much there but wish you luck with your continuing care and treatment.
I can understand the feelings regarding the catheter - I had one for 10 months - the trick is to keep everything spotless and try and ignore it and get on with life. Morning and night boil some water, let it cool and once at it's cool. pull back your foreskin (If you have one) and clean around where the catheter enters the penis (there will be debris!). This will prevent any UTI and you will feel better for it.
Good luck going forward - if I can do anything else for you please let me know.
Best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
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Hello angusP2
Thankyou for the update - I know just where you are coming from when you had the catheter removed - although believe it or not after 10 months - I missed it (but I had to learn to wee again and that's another story).
I wish you well with the operation on Thursday - It sounds an interesting procedure on your spine and I do hope it works for you - and the radiotherapy should be like a walk in the park after the operation.
Keep us posted and best wishes - Brian.
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Strength, Courage, Faith, Hope, Defiance, VICTORY.
I am a Macmillan volunteer.
