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RT after RP and a Biological-Recurrence - RT post RP,Biological-Recurrence

User
Posted 12 Mar 2018 at 14:59

Hello All. I wonder if any members of the forums have experience of RT having already had RP? I was clear of PCa after a RP early in 2011; however, I had a biological-recurrence late in 2016 after 5 years (a good run and no complaints) - the numerical details are at the foot of the message. I have elected to go for RT but, despite contacting PC UK, who were fantastic, and chatting it over with the Onco and doing a fair bit of research myself, while I am pretty confident it is the right way to go, I am still more than a bit nervous about the potential risks of getting rid of the PCa but attracting the worst-case side-effects, or worse, finding the PCa remains the same (PCa not in the prostate bed), with side-effects and the added follow-on treatment.

I remember before RP going through the same thought loops (RP versus RT) and the mind tends to drift towards the worse-case scenario. If any one has been through this particular sequence I would be grateful to hear about any experiences. I have been through most things, letting the PCa run-on to a point where it reaches 0.2 and perhaps becoming visible on a scanner - but that may miss the one chance of containing it early. I could accept that the way I am now is ok and decline any more strategic interventions, using hormone therapy etc to contain it - but I would kick myself if I then felt I hadn't taken a chance.  

In writing this, readers may be questioning why I am writing - it looks clear cut; go for the nuclear hit! I just wondered how others came to this, or another conclusion. All the advice has been positive (accepting that no-one can make the decision for me), any thoughts would be helpful.

Many thanks for reading.

Chris 

Age 66 and still active. Gleason 3+4 PT3a Post-op, tumours at the bladder neck but margins clear - possibly microscopic PCa remains but margins clear - an accurate assessment as it turn out!! My PSA remained undetectable until late 2016 when it went up to 0.03 (still nothing to be concerned with) until the last 3 readings have moved upwards, taken every 3 months, which have moved the score to 0.05 in Mar 18. Although it is a number that readers will think is still insignificant, the fact that I don't have a prostate means the reading is on the move. 

 

 

User
Posted 12 Mar 2018 at 16:38
Hi Crolyat, I had salvage radiotherapy March/April 2017. I had prostatectomy July 2015 with recurrence a year later unfortunately.

I had MRI of the pelvis and an F18 choline PET scan confirming tumours on Prostate bed and seminal vesicle remnants.

Despite my oncologist being convinced I have microscopic spread (this hadn’t been imaged) I opted to proceed with salvage RT which targeted 55 Grays at my Prostate bed and seminal vesicle remnants. I am also on HT and will remain on that until end April 2019. I was told the salvage RT had about a 40% chance of curing me.

See my profile for more information.

My PSA is <0.1 for now but I won’t know how successful the RT has been until I come off the HT.

Hope this is helpful.

Ian

Ido4

User
Posted 12 Mar 2018 at 17:34

Interesting that your hospital is still using ultrasensitive testing when it has been discredited and many hospitals no longer use it. Having said that, my OOH was in almost the identical situation to you (including the bladder involvement although he also had PNI). In the event, he was reluctant to have additional treatment and waited until the PSA rose to 0.16 before he agreed to salvage RT / HT. That was 2 years post op and he was 52 - they targeted the RT to include the bottom of his bladder and he had no problems with the RT at all. It was possibly easier because he was offered 20 sessions at a higher dose than usual so it didn't affect him going to work, playing rugby, etc. 6 years on, his PSA is bobbing around the 0.1 mark and he has no regrets.

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

User
Posted 12 Mar 2018 at 18:17
Hi Crolyat

My experience was slightly different in that I had the RALP in August 2015 but the first PSA test following was 0.2 so strictly speaking I didn't have a recurrence as I didn't ever achieve an undetectable result. The PSA rose to 0.3 and then 0.5 so we knew that something needed to be done. The onco said that as the PSA was rising relatively slowly this normally suggested the cells were in the prostate bed and he offered SRT on it's own, SRT with HT or HT on it's own. We had no idea whether the cells were in the prostate bed or elsewhere. I accepted that if they were not in the prostate bed then RT would be ineffective but I would run the risk of potential SE's and then probably need to have HT. I simply decided to go for one at a time so had SRT first while PSA was 0.5. After SRT PSA was 0.6 and continued climbing so am now on HT.

I have been lucky as I had no real SE's during SRT and am doing OK with HT. Very a year and a half from SRT I will say that I am aware that my bladder area feels a bit "stiff" which the onco thinks might be a result of the SRT but I can't say that it's a problem as such. PSA since being on HT is undetectable. Perhaps HT with SRT might have got me to this point quicker but I havve no regrets.

All the best.

Kevan

User
Posted 12 Mar 2018 at 21:08

Many thanks Ian, Lyn and Kevin. Thanks for getting back to me, I hope this is the best way to reply rather than individually which seems to hide the message while writing.

Ian, sorry to hear that you had to have salvage RT so early after the RALP. Fingers crossed that the PSA remains super low; just shows how many permutations of treatment and outcomes there are.

Lyn, I hadn't heard about the ultra sensitive machines being discredited but I know they were often seen as causing alarm too soon - or the basis for launching a treatment when it may not be necessary - so I can see why that is so. I am glad your OH is doing so well and my target area is the same - hence my apprehension, so reassuring to hear his outcome; accepting that we are all different etc.

Kevan, thanks for revealing your logic, it mirrors mine in many ways which is reassuring. The prostate bed will be the target and, as Lyn's OH had, bladder neck included. Good to hear that the SE's are showing no signs; I hope the PSA holds.

Thank you all for sharing your experience and knowledge, it is much appreciated. Chris

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User
Posted 12 Mar 2018 at 16:38
Hi Crolyat, I had salvage radiotherapy March/April 2017. I had prostatectomy July 2015 with recurrence a year later unfortunately.

I had MRI of the pelvis and an F18 choline PET scan confirming tumours on Prostate bed and seminal vesicle remnants.

Despite my oncologist being convinced I have microscopic spread (this hadn’t been imaged) I opted to proceed with salvage RT which targeted 55 Grays at my Prostate bed and seminal vesicle remnants. I am also on HT and will remain on that until end April 2019. I was told the salvage RT had about a 40% chance of curing me.

See my profile for more information.

My PSA is <0.1 for now but I won’t know how successful the RT has been until I come off the HT.

Hope this is helpful.

Ian

Ido4

User
Posted 12 Mar 2018 at 17:34

Interesting that your hospital is still using ultrasensitive testing when it has been discredited and many hospitals no longer use it. Having said that, my OOH was in almost the identical situation to you (including the bladder involvement although he also had PNI). In the event, he was reluctant to have additional treatment and waited until the PSA rose to 0.16 before he agreed to salvage RT / HT. That was 2 years post op and he was 52 - they targeted the RT to include the bottom of his bladder and he had no problems with the RT at all. It was possibly easier because he was offered 20 sessions at a higher dose than usual so it didn't affect him going to work, playing rugby, etc. 6 years on, his PSA is bobbing around the 0.1 mark and he has no regrets.

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

User
Posted 12 Mar 2018 at 18:17
Hi Crolyat

My experience was slightly different in that I had the RALP in August 2015 but the first PSA test following was 0.2 so strictly speaking I didn't have a recurrence as I didn't ever achieve an undetectable result. The PSA rose to 0.3 and then 0.5 so we knew that something needed to be done. The onco said that as the PSA was rising relatively slowly this normally suggested the cells were in the prostate bed and he offered SRT on it's own, SRT with HT or HT on it's own. We had no idea whether the cells were in the prostate bed or elsewhere. I accepted that if they were not in the prostate bed then RT would be ineffective but I would run the risk of potential SE's and then probably need to have HT. I simply decided to go for one at a time so had SRT first while PSA was 0.5. After SRT PSA was 0.6 and continued climbing so am now on HT.

I have been lucky as I had no real SE's during SRT and am doing OK with HT. Very a year and a half from SRT I will say that I am aware that my bladder area feels a bit "stiff" which the onco thinks might be a result of the SRT but I can't say that it's a problem as such. PSA since being on HT is undetectable. Perhaps HT with SRT might have got me to this point quicker but I havve no regrets.

All the best.

Kevan

User
Posted 12 Mar 2018 at 21:08

Many thanks Ian, Lyn and Kevin. Thanks for getting back to me, I hope this is the best way to reply rather than individually which seems to hide the message while writing.

Ian, sorry to hear that you had to have salvage RT so early after the RALP. Fingers crossed that the PSA remains super low; just shows how many permutations of treatment and outcomes there are.

Lyn, I hadn't heard about the ultra sensitive machines being discredited but I know they were often seen as causing alarm too soon - or the basis for launching a treatment when it may not be necessary - so I can see why that is so. I am glad your OH is doing so well and my target area is the same - hence my apprehension, so reassuring to hear his outcome; accepting that we are all different etc.

Kevan, thanks for revealing your logic, it mirrors mine in many ways which is reassuring. The prostate bed will be the target and, as Lyn's OH had, bladder neck included. Good to hear that the SE's are showing no signs; I hope the PSA holds.

Thank you all for sharing your experience and knowledge, it is much appreciated. Chris

 
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