Lots going on, not in a good way

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.

Hi not really Angus

I'm following a similar track, albeit several years behind you. Open RP, then RT due to rapidly rising PSA. Now have Lymphocele (I guess following the surgery). This is causing me some pain in my leg after I walk for a short distance. Did you get this? I'm struggling to find people who have had the same thing.

Hopefully your catheter will come out next Wednesday (I remember looking forward to the removal of this following my RP so I know how you feel ... goodness knows how people live with them for months and years).

It sounds like you have a good team working on your condition, so at the moment everything sounds fixable. I've recently talked to a couple of friends who now have no treatment options - just palliative care when the pain gets too much. I feel for them ... but we are not there yet, so I hope you can keep faith in the medics and let them work their magic.

All the best

Paul

Hi Angus 

It sounds like we are both in a similar situation. I had the surgery and radiation about 4 years ago as well. I’ve been on hormone therapy since then. I get scans to track a couple of spots on my ribs. Recently  I had a bladder scope and biopsy and it was clear of cancer. I recently had 12 days of heavy bladder bleeding but was able to avoid the catheter. My doctors keep telling me that this is due to damage from the radiation. It’s scary and gross but it will clear up. One thing I did to get the clots to pass was hang upside down with a full bladder to try and move the clots about. It seemed to work but a couple of times I thought I was going to have to get a catheter. 
anyway keep up your spirit stay hydrated and try to be active 

well wishes to you 

1. Sending love and lots of hugs your way 

Hi Angus i had a cystoscopy about two weeks ago as i was/am passing blood and radiation cystitis was diagnosed,

Eddie

Hello Angus you’re going through the mill a bit ,keep upbeat if you can and hopefully things get better,you’ll feel better once the catheter’s out  sending good wishes Robert

Hello all,

Thanks to everyone who commented on my post two weeks ago, I thought I should share an update.

I had the catheter removed on 21st February, to my very great relief. The urology nurse was concerned about retention - not being able to pass urine - but I have the opposite problem, which is incontinence. I have not been completely dry since my original surgery 4 years ago, but since having the catheter removed things are a lot worse than they were immediately before the operation. I hope things will improve in the coming weeks.

In the meantime, I am due to have the cryo-ablation procedure this week on Thursday (7th March) which will require one overnight stay in hospital. I have met the specialist who is going to do this and he took the time to explain what this involves. I have also met the nurses (CNSs) on the team, so I am a lot less worried about that, although there are risks involved as there are with any surgery.

The next round of SABR radiotherapy is due to start in the week of 25th March, with a "dry-run" session in the week before that. This will be my second round of SABR so I know what to expect.

Thanks again to everyone, and best wishes to you all,

Angus (not my real name)

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.