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Rising PSA post Prostatectomy

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User
Posted 12 Aug 2022 at 12:21

About me.. i am 2 1/2 years on since i had RP surgery ( Gleason score 0f 3+4  =7 and a PSA of 42)

I had no symptoms of any kind and discovered in on a routine medical with the company i worked for.

Surgery was successful ( not wiothout side effects) but my PSA reading post surgery was non detectable below 0.01

every 3 months i get new blood test and my PSA is starting to rise, initially 0.03 and now up to 0.04

In the scheme of things this is still very low and i count myself fortunate to have been treated despite Covid stopping majority of the RP operations in that particular hospital.

Are there any members out there with a similar experience? What recommendations for treatment would you have? At what point do i accept that the Cancer has returned and look to begin further treatment?

User
Posted 12 Aug 2022 at 12:38
You should be referred to oncology if your PSA goes above 0.2 or you have three successive rises above 0.1

In the meantime, don't let your GP practice suggest that it is time for you to step down to 6 or 12 monthly testing!

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

User
Posted 13 Aug 2022 at 09:42

Thanks Go For a Run, sounds like we are in a similar situation. The more i read about PC the more i realise everybody is different , different treatments, differing responses to treatment. A friend opted for Brachytherapy rather than surgery and has seen his PSA halve. I was told by two consultants that with such a high Gleeson score 3+4=7 that prostatectomy was really the only effective solution for me. The risk of spreading outside the prostate was very high if i did nothing. so i guess i would make the same call again. what i really dont know now though is this return of rising psa's despite still being from a low base; how soon before i need secondary treatment....keep testing, keep watching seems to be the mantra!

User
Posted 13 Aug 2022 at 19:24

Hi William,  Today's been a good day at the Blackpool Air Show.  I thought I'd write this then open a bottle of wine.

From what I gather it's hormones plus RT.  Hormones just hold it back, shrink it and weaken it, and with other drugs might kill micro cells but aren't a fix overall.  RT is the killer.

There was a TV programme  recently that showed a 3D simulation of a woman with a 4 inch breast tumour. Hormones shrank it to pea size, then they removed it. Amazing. I assume that's similar to prostate although they use RT only after hormones.

I did a nomogram that used a US hospital's data that said with my Gleason and other characteristics hormones plus RT have between 60 and 70% probability of keeping me undetectable for 6yrs.  RT without hormones was below 50%.  On top of that a doctor who talks sensibly on YouTube says my Gleason would call for 18 months hormones including early chemo.  Your Gleason might only need 6 months hormones.

Link to nomogram,

https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

The link below is just one video of many by that doctor and I haven't checked it's the right one,

https://youtu.be/nv9yY5Vkz2c

 

 

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User
Posted 12 Aug 2022 at 12:38
You should be referred to oncology if your PSA goes above 0.2 or you have three successive rises above 0.1

In the meantime, don't let your GP practice suggest that it is time for you to step down to 6 or 12 monthly testing!

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

User
Posted 12 Aug 2022 at 16:06

Mine was a worryingly-high 0.06 post-operation (May 2019) and the next three tests were 0.07, 0.09, 0.09 and then 0.11 in January 2021. Since then I have had 0.11 four times with a 0.11 and a 0.09. Last test was 0.11 in June 2022.

So, after three years, I don't have a doubling time and I haven't yet had three successive rises above 0.1 nor any reading of 0.2 or more. Consequently, I just have a test every three or four months and will think about more treatment if the PSA rises.

I think I am quite unusual, though. As long as you are being monitored every three or four months, you should be in a position to get more treatment before anything too bad happens.

User
Posted 12 Aug 2022 at 16:45
Check my profile and posts too 0.100 after 7 years. One onco says treat one says wait..

Reading go for a runs post above thinking I will wait at least until I meet the 3 rises above 0.1..

User
Posted 12 Aug 2022 at 22:54

Originally Posted by: Online Community Member

Mine was a worryingly-high 0.06 post-operation (May 2019) and the next three tests were 0.07, 0.09, 0.09 and then 0.11 in January 2021. Since then I have had 0.11 four times with a 0.11 and a 0.09. Last test was 0.11 in June 2022.

So, after three years, I don't have a doubling time and I haven't yet had three successive rises above 0.1 nor any reading of 0.2 or more. Consequently, I just have a test every three or four months and will think about more treatment if the PSA rises.

I think I am quite unusual, though. As long as you are being monitored every three or four months, you should be in a position to get more treatment before anything too bad happens.

Interesting- John's PSA has been bobbing between <0.1 and 0.11 for a number of years now. His onco's view is that he may just produce a high level of 'healthy' PSA. 

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

User
Posted 12 Aug 2022 at 23:35

My psa rose to 0.09 3 months ago and I'm due another test.  I tell myself that in several reputable hospitals I would not be aware as they use <0.1 as undetectable.  I'm glad I know but feel it mustn't be risky at 0.09 even with a 4+4 Gleason.

I'm expecting to get my 3rd increase and hope it's at the most 0.12, of course less will be great,   That could mean by November I'll be 0.16 which to me would definitely want a referral to Oncology.  I'm torn about whether to push for Oncology  at 0.12 and then, if offered, whether to take instant hormone for RT treatment or wait a bit to near 0.2 and get a psma scan.  All being well.   I'm a bit of a worrier and so it's fingers crossed.

If that's any help for you.

Edited by member 12 Aug 2022 at 23:37  | Reason: Not specified

User
Posted 13 Aug 2022 at 09:42

Thanks Go For a Run, sounds like we are in a similar situation. The more i read about PC the more i realise everybody is different , different treatments, differing responses to treatment. A friend opted for Brachytherapy rather than surgery and has seen his PSA halve. I was told by two consultants that with such a high Gleeson score 3+4=7 that prostatectomy was really the only effective solution for me. The risk of spreading outside the prostate was very high if i did nothing. so i guess i would make the same call again. what i really dont know now though is this return of rising psa's despite still being from a low base; how soon before i need secondary treatment....keep testing, keep watching seems to be the mantra!

User
Posted 13 Aug 2022 at 09:49

Thanks Peter, Yes i go through bouts of worrying one minute, then another day i forget about ot and focus on my golf score. It is the uncertainty of what lies ahead , will it return, will i need further treatmenmt? I did not know that some hospitals see 0.1 as non detectable, so at least my oncology nurse is being very open with me. they have said they would not refer me until i was over 0.2, but sounds like it is possible to get referred over 0.1 if the are rising psa's between 0.1 and 0.2

what are you hearing of the pros and cons of Hormone therapy v RT?

User
Posted 13 Aug 2022 at 10:11

Great to read profile ,,, sound like you have had quite a journey!

User
Posted 13 Aug 2022 at 19:24

Hi William,  Today's been a good day at the Blackpool Air Show.  I thought I'd write this then open a bottle of wine.

From what I gather it's hormones plus RT.  Hormones just hold it back, shrink it and weaken it, and with other drugs might kill micro cells but aren't a fix overall.  RT is the killer.

There was a TV programme  recently that showed a 3D simulation of a woman with a 4 inch breast tumour. Hormones shrank it to pea size, then they removed it. Amazing. I assume that's similar to prostate although they use RT only after hormones.

I did a nomogram that used a US hospital's data that said with my Gleason and other characteristics hormones plus RT have between 60 and 70% probability of keeping me undetectable for 6yrs.  RT without hormones was below 50%.  On top of that a doctor who talks sensibly on YouTube says my Gleason would call for 18 months hormones including early chemo.  Your Gleason might only need 6 months hormones.

Link to nomogram,

https://www.mskcc.org/nomograms/prostate/salvage_radiation_therapy

The link below is just one video of many by that doctor and I haven't checked it's the right one,

https://youtu.be/nv9yY5Vkz2c

 

 

 
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