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Timing of SRT after radical prostatectomy

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User
Posted 27 Mar 2022 at 19:25

Hi all - I'm 53 now had surgery some 13 months ago and psa is now at 0.08 having inched up from 0.03 post op (see below). Spoke with urology surgeon last week and they're suggesting that I meet with a ONCOlogist with a view to starting SRT asap, although they are yet to have the MDT meet. Most of what I've read on here, if I am correct, seems to indicate there is little to be gained in going so early, and most seem to wait until psa is getting towards 0.2 or above? Can anyone offer any advice? I don't like the thought of SRT with all its side effects so soon if there is a chance I can delay a while with no particular reduction in chances of cure? Thanks in advance

PSA pre op 3.7 down to 3.2 after re-test

5/12 cores cancerous at biopsy

RP robotic operation Feb 2021

t2a n0 m0

1 positive margin at base

prostate wall not breached, I believe

gleason 3+4

May 21 PSA 0.03 post op

Aug 21 PSA 0.04

Dec 21 PSA 0.05

Mar 22 PSA 0.08 -  Urologist Surgeon suggesting Salvage therapy and referal to oncology due to rises but seems early to me ?????

Edited by member 29 Mar 2022 at 13:18  | Reason: Not specified

User
Posted 28 Mar 2022 at 01:15

Hi Snolly, I had RT as a primary treatment not SRT so my experiences are not directly comparable to yours. 

I think your PSA slow rise from a low start, is highly indicative of a few cells in the prostate bed. My usual philosophy is to let sleeping dogs lie, but I'd say your cancer isn't sleeping. At 53 you have 30 years ahead of you, and this cancer will probably kill you in about ten years if left untreated. 

Some would argue wait until it shows up in a PET scan so they know where to fire the radiation, but I think I would want a fairly wide beam of radiation to the whole prostate bed; more of a machine gun approach than a sniper, in which case I see little point in waiting for it to show up on a scan. The longer you wait the more time cells have to go wondering off around your body.

Dave

User
Posted 28 Mar 2022 at 13:04
I think the point is to be referred to oncology so that you are in the hands of the right specialist - that's not to say that the onco would recommend starting salvage treatment immediately. You are correct about the definition of a biochemical recurrence but your doubling time is around 6 months so likelihood is that you will be above 0.1 by mid-Summer.

My husband was referred to oncology at 0.12 in the May, started HT immediately and had the SRT at the end of Summer once we had had a couple of holidays ... why spoil the nicest months of the year? Once you are in the care of the oncologist, you can discuss the benefits and risks of intervening quickly or waiting for 0.2

The upside is that your PSA is behaving like a classic 'cells left in the prostate bed / pelvic area rather than distant mets.

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

User
Posted 28 Mar 2022 at 17:22

Everybody is different and you may be clutching at straws but my PSA rose initially after robotic surgery and has levelled off in the past year. That's not to say it won't rise again, as it probably will, but personally I am happy to put off SRT as long as it makes sense to do so.

I had robotic surgery in May 2019. Post-op I was 0.06 and then PSA rose successively:
.07 (Feb 2020)
.09
.09
.11 (Jan 2021).

Since then, PSA has been:
.10
.11
.09
.11,
.11 (Feb 2022).

Interestingly, I don't have a "doubling time" as it hasn't doubled yet, it hasn't yet gone above 0.2 and I haven't yet had three successive rises above 0.1!

User
Posted 28 Mar 2022 at 18:20

Originally Posted by: Online Community Member
Thank you Lynn...did your husband have long term side effects post SRT ? I've read some horror stories on here!

No, none. He worked full time throughout the RT, usually having his zap on the way to work. He carried on going to the gym and playing rugby. The only impact during the RT was that towards the end, he needed a short afternoon nap at his desk sometimes! He hated the bicalutimide and stopped it early - it was affecting his weights / gym work but I think that really it was the idea of HT that he hated.  

 

Originally Posted by: Online Community Member
Lastly, what is the expected levels of PSA after SRT ? Are they expected to drop off the scale again or will there always be "something there" ?

It can take 18 months to see results of SRT in PSA readings but the expectation is the same as post-op; that PSA remains below 0.1. Having said that, John's PSA wanders between <0.1 and 0.11 depending on the time of year and his SRT was nearly 10 years ago! 

Edited by member 28 Mar 2022 at 18:24  | Reason: Not specified

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

User
Posted 28 Mar 2022 at 20:49
I don't have the expertise of LynEyre, but as someone on track for SRT I have taken the effort to find out a bit.

Because your latest reading is a big jump they are going to want to follow you closely. Even though the current PSA is below 0.2, if it is increasing fast they will want to act. A single reading could be aberrant, but if further readings suggest a doubling time less than six months I suspect they will want to irradiate sooner rather than later. The oncologists are the right people to be dealing with.

As LynEyre says, the chances are you have a few dividing cells left in the prostate bed following surgery, which they can easily target by SRT.

If it is any consolation, my experience is that once they start you on hormone therapy in preparation for SRT the PSA goes down. That buys time. Handy for me because part of the work-up showed I had a large polyp in my rectum which has now been removed, but meant a delay while the surgical wound recovers and until the pathology report arrives. I am hoping my next PSA will have stayed low under continuing hormone treatment, and then after SRT it will stay low without hormones.

So my hope is that for both of us, once SRT is over our cancers are stable for a long while to come. In my case we have planned to do what LynEyre also suggested: take advantage of the waiting time for a couple of holidays. Good luck!

User
Posted 29 Mar 2022 at 07:51
BTW re "testing at another hospital and not knowing because you are <0.1"

Not necessarily true, I tried that "bury my head in the sand approach" and it came back as 0.1 once it went over 0.05! Much better to have it to 2 decimal places.

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User
Posted 28 Mar 2022 at 01:15

Hi Snolly, I had RT as a primary treatment not SRT so my experiences are not directly comparable to yours. 

I think your PSA slow rise from a low start, is highly indicative of a few cells in the prostate bed. My usual philosophy is to let sleeping dogs lie, but I'd say your cancer isn't sleeping. At 53 you have 30 years ahead of you, and this cancer will probably kill you in about ten years if left untreated. 

Some would argue wait until it shows up in a PET scan so they know where to fire the radiation, but I think I would want a fairly wide beam of radiation to the whole prostate bed; more of a machine gun approach than a sniper, in which case I see little point in waiting for it to show up on a scan. The longer you wait the more time cells have to go wondering off around your body.

Dave

User
Posted 28 Mar 2022 at 12:13

Thanks Dave. I think I am a bit fixated on the 0.2 figure, although I did think that was the official biochemical recurrence figure or 3 rises over 0.1 - I am inclined to at least wait for one more psa reading at least to see if the 0.08 was a "blip" - or if things might perhaps settle.  However I do keep reading there is no more risk waiting for 0.2

User
Posted 28 Mar 2022 at 13:04
I think the point is to be referred to oncology so that you are in the hands of the right specialist - that's not to say that the onco would recommend starting salvage treatment immediately. You are correct about the definition of a biochemical recurrence but your doubling time is around 6 months so likelihood is that you will be above 0.1 by mid-Summer.

My husband was referred to oncology at 0.12 in the May, started HT immediately and had the SRT at the end of Summer once we had had a couple of holidays ... why spoil the nicest months of the year? Once you are in the care of the oncologist, you can discuss the benefits and risks of intervening quickly or waiting for 0.2

The upside is that your PSA is behaving like a classic 'cells left in the prostate bed / pelvic area rather than distant mets.

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

User
Posted 28 Mar 2022 at 16:01

Originally Posted by: Online Community Member

they're suggesting that I meet with a urologist with a view to starting SRT asap, although they are yet to have the MDT meet.

Did they mean "meet with an oncologist"?

User
Posted 28 Mar 2022 at 16:50

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

they're suggesting that I meet with a urologist with a view to starting SRT asap, although they are yet to have the MDT meet.

Did they mean "meet with an oncologist"?

oops yes sorry my mistake - have edited now thank you

User
Posted 28 Mar 2022 at 17:00
In that case, as Lynn says, you're in the right place and they will advise.
User
Posted 28 Mar 2022 at 17:14

Originally Posted by: Online Community Member
I think the point is to be referred to oncology so that you are in the hands of the right specialist - that's not to say that the onco would recommend starting salvage treatment immediately. You are correct about the definition of a biochemical recurrence but your doubling time is around 6 months so likelihood is that you will be above 0.1 by mid-Summer.

My husband was referred to oncology at 0.12 in the May, started HT immediately and had the SRT at the end of Summer once we had had a couple of holidays ... why spoil the nicest months of the year? Once you are in the care of the oncologist, you can discuss the benefits and risks of intervening quickly or waiting for 0.2

The upside is that your PSA is behaving like a classic 'cells left in the prostate bed / pelvic area rather than distant mets.

 

Thank you Lynn...did your husband have long term side effects post SRT ? I've read some horror stories on here! 

They are having an MDT meet and then presumably refer to oncology so we can at least have that initial discussion. I know I had a bit of  jump this time (I blame eating loads of flaxseeds but was told they help reduce psa!!!) but it IS possible that things could stabilise, right ? I know I am clutching at straws but it would seem sensible to do another psa test in 3 months regardless. If i was being tested at another hospital I wouldn't even know the rises yet and I'd still just be "<0.1" and not stressing!

Lastly, what is the expected levels of PSA after SRT ? Are they expected to drop off the scale again or will there always be "something there" ? 

To be honest, its the long term side effects that panic me the most, especially urinary. I seemed to recover from the robotic surgery really quickly and had hardly any leakage after the catheter was removed. ED took a bit longer but is getting there, will be a shame to go in to reverse gear again...

 

User
Posted 28 Mar 2022 at 17:22

Everybody is different and you may be clutching at straws but my PSA rose initially after robotic surgery and has levelled off in the past year. That's not to say it won't rise again, as it probably will, but personally I am happy to put off SRT as long as it makes sense to do so.

I had robotic surgery in May 2019. Post-op I was 0.06 and then PSA rose successively:
.07 (Feb 2020)
.09
.09
.11 (Jan 2021).

Since then, PSA has been:
.10
.11
.09
.11,
.11 (Feb 2022).

Interestingly, I don't have a "doubling time" as it hasn't doubled yet, it hasn't yet gone above 0.2 and I haven't yet had three successive rises above 0.1!

User
Posted 28 Mar 2022 at 18:20

Originally Posted by: Online Community Member
Thank you Lynn...did your husband have long term side effects post SRT ? I've read some horror stories on here!

No, none. He worked full time throughout the RT, usually having his zap on the way to work. He carried on going to the gym and playing rugby. The only impact during the RT was that towards the end, he needed a short afternoon nap at his desk sometimes! He hated the bicalutimide and stopped it early - it was affecting his weights / gym work but I think that really it was the idea of HT that he hated.  

 

Originally Posted by: Online Community Member
Lastly, what is the expected levels of PSA after SRT ? Are they expected to drop off the scale again or will there always be "something there" ?

It can take 18 months to see results of SRT in PSA readings but the expectation is the same as post-op; that PSA remains below 0.1. Having said that, John's PSA wanders between <0.1 and 0.11 depending on the time of year and his SRT was nearly 10 years ago! 

Edited by member 28 Mar 2022 at 18:24  | Reason: Not specified

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

User
Posted 28 Mar 2022 at 20:49
I don't have the expertise of LynEyre, but as someone on track for SRT I have taken the effort to find out a bit.

Because your latest reading is a big jump they are going to want to follow you closely. Even though the current PSA is below 0.2, if it is increasing fast they will want to act. A single reading could be aberrant, but if further readings suggest a doubling time less than six months I suspect they will want to irradiate sooner rather than later. The oncologists are the right people to be dealing with.

As LynEyre says, the chances are you have a few dividing cells left in the prostate bed following surgery, which they can easily target by SRT.

If it is any consolation, my experience is that once they start you on hormone therapy in preparation for SRT the PSA goes down. That buys time. Handy for me because part of the work-up showed I had a large polyp in my rectum which has now been removed, but meant a delay while the surgical wound recovers and until the pathology report arrives. I am hoping my next PSA will have stayed low under continuing hormone treatment, and then after SRT it will stay low without hormones.

So my hope is that for both of us, once SRT is over our cancers are stable for a long while to come. In my case we have planned to do what LynEyre also suggested: take advantage of the waiting time for a couple of holidays. Good luck!

User
Posted 28 Mar 2022 at 22:55

Originally Posted by: Online Community Member

Everybody is different and you may be clutching at straws but my PSA rose initially after robotic surgery and has levelled off in the past year. That's not to say it won't rise again, as it probably will, but personally I am happy to put off SRT as long as it makes sense to do so.

I had robotic surgery in May 2019. Post-op I was 0.06 and then PSA rose successively:
.07 (Feb 2020)
.09
.09
.11 (Jan 2021).

Since then, PSA has been:
.10
.11
.09
.11,
.11 (Feb 2022).

Interestingly, I don't have a "doubling time" as it hasn't doubled yet, it hasn't yet gone above 0.2 and I haven't yet had three successive rises above 0.1!

Thats very interesting! Thanks for replying. See maybe this will happen to me also, you never know - and if I jump right in now while at 0.08 with SRT, then I'd never know if maybe it might have settled. 

User
Posted 28 Mar 2022 at 23:00

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
Thank you Lynn...did your husband have long term side effects post SRT ? I've read some horror stories on here!

No, none. He worked full time throughout the RT, usually having his zap on the way to work. He carried on going to the gym and playing rugby. The only impact during the RT was that towards the end, he needed a short afternoon nap at his desk sometimes! He hated the bicalutimide and stopped it early - it was affecting his weights / gym work but I think that really it was the idea of HT that he hated.  

 

Originally Posted by: Online Community Member
Lastly, what is the expected levels of PSA after SRT ? Are they expected to drop off the scale again or will there always be "something there" ?

It can take 18 months to see results of SRT in PSA readings but the expectation is the same as post-op; that PSA remains below 0.1. Having said that, John's PSA wanders between <0.1 and 0.11 depending on the time of year and his SRT was nearly 10 years ago! 

Thanks Lyn - its reassuring to hear no SRT side effects - I guess everyone is different but it would be nice to know the percentages I suppose. Will ask the onco, obviously. I guess, what I really want to know are the chances of SRT being curative, because its last chance saloon really right ....?

User
Posted 28 Mar 2022 at 23:09

Originally Posted by: Online Community Member
I don't have the expertise of LynEyre, but as someone on track for SRT I have taken the effort to find out a bit.

Because your latest reading is a big jump they are going to want to follow you closely. Even though the current PSA is below 0.2, if it is increasing fast they will want to act. A single reading could be aberrant, but if further readings suggest a doubling time less than six months I suspect they will want to irradiate sooner rather than later. The oncologists are the right people to be dealing with.

As LynEyre says, the chances are you have a few dividing cells left in the prostate bed following surgery, which they can easily target by SRT.

If it is any consolation, my experience is that once they start you on hormone therapy in preparation for SRT the PSA goes down. That buys time. Handy for me because part of the work-up showed I had a large polyp in my rectum which has now been removed, but meant a delay while the surgical wound recovers and until the pathology report arrives. I am hoping my next PSA will have stayed low under continuing hormone treatment, and then after SRT it will stay low without hormones.

So my hope is that for both of us, once SRT is over our cancers are stable for a long while to come. In my case we have planned to do what LynEyre also suggested: take advantage of the waiting time for a couple of holidays. Good luck!

Thanks J-B - I See from your bio that you've been above 0.2 (although you took a fairly long while to get there) which I always thought was the trigger point so to speak. Which is why I am questioning my 0.08 - makes me wonder also sometimes if someones done a typo at the last blood test! I will certainly get another psa test done before a decision on SRT. Good luck to you, also

User
Posted 28 Mar 2022 at 23:15

Snolly, my PSA fluctuated in the two years after surgery, but the long term pattern was a rising PSA. My team kept telling me they had patients who reached 0.1 and then stabilized. I was referred back to urology at 0.1, that just meant i was monitored more frequently, as my PSA continued to rise I was referred to oncology and my SRT started at 0.27.

Another test may show the 0.08 was a rouge reading. Were all the tests at the same hospital, were the bloods taken at the same time of day.

My PSA dropped after SRT but then started to rise again, I did not have HT. My oncologist says SRT to the prostate bed is an educated guess, based on experience and data.

There is lots of research and articles on when to start SRT and whether additional HT is beneficial or not, they don't all agree. 

My SRT turned into a horror story, but you would have to be extremely unlucky to have the same issues. I have adapted to my new normal.

Thanks Chris

User
Posted 29 Mar 2022 at 07:47
Snolly you don't mention your post op Gleason score this is important to understanding how much time you have to make a decision.

Regardless of G score you know your surgeon left a bit behind because you had a positive margin. So any detectable PSA post op indicates what was left behind is viable and wasn't permanently damaged by the trauma of the operation.

Questions for your onco:

Will a PSMA PET scan help inform The extent of SRT required? (Read Ulsterman story).

Do recent trials indicate it's safe to wait with whatever your G score is.

Will lymph nodes get irradiated and why / why not.

The onco should provide sensible reasoned answers to all the above, if they don't get a second opinion.

User
Posted 29 Mar 2022 at 07:51
BTW re "testing at another hospital and not knowing because you are <0.1"

Not necessarily true, I tried that "bury my head in the sand approach" and it came back as 0.1 once it went over 0.05! Much better to have it to 2 decimal places.

User
Posted 29 Mar 2022 at 13:26

Originally Posted by: Online Community Member
Snolly you don't mention your post op Gleason score this is important to understanding how much time you have to make a decision.

Regardless of G score you know your surgeon left a bit behind because you had a positive margin. So any detectable PSA post op indicates what was left behind is viable and wasn't permanently damaged by the trauma of the operation.

Questions for your onco:
Will a PSMA PET scan help inform The extent of SRT required? (Read Ulsterman story).

Do recent trials indicate it's safe to wait with whatever your G score is.

Will lymph nodes get irradiated and why / why not.

The onco should provide sensible reasoned answers to all the above, if they don't get a second opinion.

Thanks. Sorry my gleason was 3+4 after op (downgraded from 4+3 pre op) - don't know if the size of the positive margin is relevant as they say it didnt breach but I guess we now just use the psa figures to understand whats happening. Anyway have been referred to onco for a discussion now (not sure urologist even had an MDT meet as it happened on same day) so we'll see what he/she says. Stress !

User
Posted 29 Mar 2022 at 14:08
The positive margin is significant because it indicates that some cancer was potentially left behind - this increases the likelihood that your PSA rise is due to a few cancer cells left in the prostate bed and substantially increases the chance of SRT being successful.

A positive margin is not necessarily linked to whether the cancer had breached the prostate.

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

User
Posted 29 Mar 2022 at 14:21
I often wonder how you can have a positive margin on a T2? Surgeon mis sliced?
User
Posted 29 Mar 2022 at 18:06
There are two types of positive margin, internal and external. An internal positive margin is surgeon error - a bit of the gland has been left behind. An external positive margin is unlucky - the diagnosis of T1 or T2 turned out to be incorrect.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 30 Mar 2022 at 06:37
Thanks Lyn probably reinforces the argument for early SRT then.
 
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