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RARP next week

User
Posted 20 Mar 2025 at 10:34

Well, 8 months post op now, and my latest PSA result came back yesterday at <0.02, so I'm very happy.

ED and Incontinence are still issues, but I guess it's still relatively early days, and if I'm honest, I've been a bit slack (no pun intended) with my pelvic floor exercises. I need to double down on these, as I'd really like to get back into running, but at the moment that isn't really an option.

Still getting the 3 monthly anxiety when testing comes around, but I guess that's normal.

All the best to everyone in this exclusive club.

Ian.

User
Posted 20 Mar 2025 at 11:06

Great result Ian. Keep them<<<<<<< arrows flying, mate. 👍

I hope the incontinence and ED issues improve.

User
Posted 20 Mar 2025 at 19:49

Hi Ian, 

Excellent result, I'll raise a glass to that 🍺

Keep working on the continence and ED issues, hopefully you'll make some progress. Have you tried injections yet?

Cheers, 

Kev.

User
Posted 09 May 2025 at 15:06

This might be of interest to some.

I have, as I'm sure a lot of us have, used the Nomograms to look at the likelihood of BCR. Unfortunately they are very generic, and do not allow you to put details of any specific added risk factors in, such as EPE, Cribriform, Tertiary pattern 5 etc.

I have researched all of these areas and read lots, but they give you a likely prognosis based on each individual area, not on the combination of all of them together.

I was using AI at work today, and it occurred to me that it might be of help with my PCr research (don't know why I had not thought about it before.

Anyway, I duly entered all of my diagnosis and post op pathology details, and asked it's opinion. The result was a very concise and clear report, giving me an estimated risk of BCR as follows:

BCR within 5 years     40-60%

BCR within 10 years   60-75%

I know AI has it's detractors, but I use it quite a bit at work, and trust it to do a much more thorough job than me, when it comes to researching any subject on the internet. These results seem to correlate with some of the stuff I've found, so I'm going to assume it's about as accurate an estimate as I'm likely to get anywhere.

User
Posted 10 May 2025 at 08:36

Hi mate.

I use https://www.mskcc.org/nomograms/prostate

It covers extra prostatic extension,  positive margins, pre-op and post-op PSA levels. It also takes into account how long your PSA has remained undetectable since the op. 

It states in the mskcc nonogram . "In general, the longer one remains free of recurrence following surgery, the more favorable one’s likelihood of continuing to remain recurrence-free."

Did you manage to add this particular factor into your AI calculation?

It's been over two years, since my op, touchwood, my PSA has remained undetectable. I was T3a, Gleason 9(4+5) with EPE but was lucky and had negative margins. My estimated chances of being BCR free appear to be after 5 years, 66%, after five years, 55% and after I0 years at 42%

It is important to note when using the mskcc nonogram for post operative results, that their probability is based on your likelihood of remaining BCR free not the chances of getting BCR.

Gradually, I've become less anxious about the chances of BCR. I'm trying to concentrate more on the present, and being 'cancer free', rather than trying to predict whether or not it'll return.

Like you I'm in favour of AI. At present, it seems to me that, the accuracy of biopsies and the  interpretation of the results (the Gleason score) are two of the most important factors in diagnosing and treating PCa. Both are open to human error and interpretation. Perhaps AI would be more accurate?

One of my sons is a bioinformatician  working in genetic research. He says, that AI is being increasingly used to good effect. In fact, he reckons it's so good, that he'll probably be made redundant within a couple of years. 🙁

 

Edited by member 10 May 2025 at 08:57  | Reason: Additional text

User
Posted 10 May 2025 at 11:37

Hi,

I am 13 months post-op but am still struggling to live in the now. I constantly worry about BCR. I am 60.

My pathology was T3a, gleason 7 (3+4), positive margins and EPE.

My first psa was 0.01 done at the hospital. My next 2 were Graham Fulford Charity at 0.03, so all detectable. I then went back to the hospital in Jan and was pleasantly surprised to get  a <0.01. I had a further <0.01 at the hospital in April. Long may they continue.

I'm going to seek some counselling to see if I can find some strategies to stop worrying all the time.

All the best.

User
Posted 10 May 2025 at 18:18

Originally Posted by: Online Community Member
My first psa was 0.01 done at the hospital. My next 2 were Graham Fulford Charity at 0.03, so all detectable. I then went back to the hospital in Jan and was pleasantly surprised to get  a <0.01. I had a further <0.01 at the hospital in April. Long may they continue.

Hello Mel.

I reckon your first 0.01 was undetectable,  but they'd missed the < arrow off. Likewise the two at 0.03 at a different lab may well have been also been undetectable.

Since my op, I've had my PSA measured at two different labs one measured down to 0.02 the other to only 0.04.

Best of luck mate.👍

 

 
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