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Recurrence after RALP?

User
Posted 07 Jul 2023 at 10:09

Morning Nick

 

For the time being and, hopefully, until I drop down dead from something else, my PSA is still undetectable. I had my surgery at Addenbrookes in late December 21 and post-op they initially tested down to  0.04. In September 22 they changed the testing regime and only tested down to 0.1. My latest test on 04/07/23 recorded my PSA as less than 0.1. Apparently, men (And women) without a prostate can record small amounts of PSA which are created in other parts of the body so to avoid false readings and to allay fears Addenbrookes and a number of other hospitals are now only testing PSA down to 0.1.

Re undergoing surgery, there is evidence from the US ( A 10 year review) that even if the cancer has spread outside the prostate (mine was bulging out when it was cut and diced and my T reading was increased from a T2 to a T3a) removing the "mother ship" so it can't send signals around the body has better outcomes than if it is left in and radiated.

Good luck with your next course of treatment

 

Ivan

 

 

User
Posted 07 Jul 2023 at 22:42

Thanks Jim. Wasn’t a pump available on the NHS? Seems like a lot to fork out. 

I’m on 10mg Tadalafil every other day which I don’t think is doing much but perhaps I’m being a little optimistic, time-wise. When I start the HT/RT I imagine it will be of no use at all.  Maybe Viagra will be next, after all that.

cheers 

User
Posted 07 Jul 2023 at 22:47

Ivan,

I guess testing to 0.1 removes a lot of the worry, until it breaches that of course. I hope yours stays there.

I didn’t know there was a variation in success rates between RP and RT. I was always told they were the same. It doesn’t change anything for me but useful to know.

cheers

Nick

User
Posted 08 Jul 2023 at 00:36

You find across the NHS sexual health services are very patchy. I noted that you were prescribed 10mg Tadalafil from your earlier posts. I asked but was told that it's no longer prescribed. I was also told that I was being referred to my sexual health clinic but again nothing happened. It wasn't until I went to my GP did I actually get any where in that direction. But even that took 2 appointments... I just decided I could not wait for NHS wheels to get moving so bought my own - you can claim the VAT back.

User
Posted 08 Jul 2023 at 01:21

Originally Posted by: Online Community Member

I didn’t know there was a variation in success rates between RP and RT. I was always told they were the same. It doesn’t change anything for me but useful to know.

cheers

Nick

For a T1 or T2, the success rate is almost identical for RP and RT. For men with T3, monotherapy RT has a better outcome than mono-RP but RP with adjuvant RT is even better. For men with mets, the US research suggested that removing the prostate could slow progression by switching off the feeder to the mets. 

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Jul 2023 at 08:11

Jim, it’s good that you’ve got what you need but unfortunate you’ve have to find your own way of getting it. The ‘Postcode Lottery’ in action again. At least as more Trusts adopt Electronic Patient Record systems, you’d hope communications will improve.

 

User
Posted 08 Jul 2023 at 08:16

Thanks Lyn. I don’t know if my T score will have changed after they found the nodule full of cancer during surgery. Not relevant now I suppose - but maybe I will ask the CNS if they’d have followed the same path if they’d known it was there, i.e. RP then RT, or if they would have gone for RT only. Or does that ‘what if’ way lie madness?!

User
Posted 08 Jul 2023 at 11:51

Originally Posted by: Online Community Member
.... if they’d known it was there ... Not relevant now I suppose...

I've quoted the most important phrase from your post. Not necessarily in the right order.

They did not know it was there - there may be an alternative universe where the MDT met and did know it was there, but we can't get to that universe, and besides whenever 'Red dwarf' went to an alternative universe there were monsters.

Not relevant now - correct, you should never worry about something you can't change, and you can't change the past.

You should use the past to learn what to do in the future, but you will never be in this situation again so I think you can safely ignore any lessons from this. However other members, yet to make a decision, can learn that not all scans are accurate and factor this into the decision making process.

 

 

Edited by member 09 Jul 2023 at 03:02  | Reason: Not specified

Dave

User
Posted 08 Jul 2023 at 15:08

Thanks Dave, that’s what I was thinking. Others might get something useful from my experience. Hope for the best…

 
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