Seeking Advice and Sharing My Journey

Hi Mike.

I had non nerve sparing RARP 10 months ago.

I was also T3a minor EPE. Pirads 4, Gleason 9 (4+5) I'm now fully continent. I was told viagra tablets would have no effect and they didn't, neither did Caverject but Invicorp works for me. It tends to be a bit hit and miss but I think that's down to my injecting ability rather than the efficacy of the drug.

When I jab the right place. Its brilliant and works in less than ten minutes. It's effective for a couple of hours. I was prescribed it through my ED clinic.

PS: Frank. I had my RARP almost five months after being diagnosed. It was cancelled twice, delayed for a month each time. Once for lack of beds and once for anaesthetists concerns.

Edited by member 21 Dec 2023 at 10:57  | Reason: Not specified

Sorry, I missed this in December - no, M1 is considered to be advanced prostate cancer and therefore incurable. There are some situations where a man has only one or two visible mets and can have high dose RT to these but it tends to just pop up somewhere else. 

Hi Frank

Nice to see you've got decent bladder control.

Constipation was a big problem for me after the op. Despite drinking cup fulls of the syrupy laxative the hospital gave me and handfuls of senna tablets. Like you, I daren't strain too much but sometimes when pushing I'd get a bit of blood coming from my penis

I went 10 days without a poo, and had to ring the doctor for some extra strong laxatives.

 Eventually she blew, and when she blew. she blew! it was like the world had fallen out of my bottom.

I apologise to those having a late breakfast.

Edited by member 02 Feb 2024 at 11:02  | Reason: Additional text

Two months, Frank, I was in a hospital ward following a minor heart attack. My wife telephoned saying that my urologist wanted a PSA check. One of the cardilogy nurses did it for me and passed the results to him next day. It was good news <.02 and is still that a year later, touch wood.

Hi Frank, 

Thanks for your message, I appreciate you reaching out. I'm still new here on this forum so cannot reply privately until I make some more posts. 

Re waiting for that first PSA result after the op... 
I got told a variety of timescales: 6-8 weeks or 12 weeks ( I think I was getting fobbed off at one point). Personally it didn't help that my notes and referral got lost between the two different health trusts  (one for prostectomy and another for oncology). 
I had to push and go to patient liaison services and raise a complaint before I got some prompt action. It did my head in having to wait for the first PSA figure. 
The prostectomy trust just gave me a blank blood/PSA form at the 6 week post op consultation and told me to make an appointment "sometime in February" which would have been 13-16 weeks post op. I am sure that was bad advice, but I think they were expecting the oncology trust to see me up by then. Nothing would have happened until I chased it. In the end, my first PSA was just under 12 weeks post op. 
In hindsight I would probably have taken that blank form and booked a blood test at 8 weeks, and then badgered the consultants / nurses until I got the result from them. 
The hospitals in my area have all gone to online blood test booking systems. So you can book a test and then just show up with the form, as the forms I am given aren't dated for a particular time. That may be different where you are? 

I hope that is useful and I hope you are recovering ok from the op. 
{Despite the cancer spreading, I feel the op went well and at 4 months post op, I have virtually full bladder control, almost no dribbles any more and post op recovery feels good. At 12 weeks post op I was walking fast for 2 miles a day every day and back to work fulltime. Between 3 and 4 months post op I have been back dancing. Now however, I do have some issue with the cancer spreading to my back, but I dont think that is operation related}.
Best wishes
Mike