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Salvage Treatment after RARP

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User
Posted 16 Feb 2023 at 07:52

Hi guys I am new to this forum, I had nerve sparing RARP surgery in April 2021 at aged 55. A year later I was told my PSA was now detectable and my cancer has started growing again. I know I have to wait until my PSA reaches the magic figure of 0.2 before the hospital will PSMA scan me to establish where it is growing. This could be another 18 months away. The thought of salvage treatment with hormone therapy and radiotherapy fill me with dread. Has anybody got any good news stories from having this treatment please?

User
Posted 16 Feb 2023 at 10:28

I had bowel problems which are controlled by medication....a daily imodium.  Hardly a huge issue.

The two treatments made me very tired.

My PSA results indicate that I'm probably completely cured although the NHS won't use that phrase in writing, though my Oncologist said that to my face.

When your time comes, think of my case.  I recommend it to you.  I have my life ahead of me.  Let's pray your treatment brings the same results.

User
Posted 16 Feb 2023 at 22:09
I am someone who had PSA rising following prostatectomy, and had hormone therapy and salvage radiotherapy.

My oncologist said the same as LynEyre reports above. In her opinion PSMA was unlikely to be meaningful with PSA less than 0.5 - but the salvage RT was likely to be most effective if started sooner than that. I was happy to start RT without a scan.

Certainly there are side effects, as there were with surgery. The hormone therapy wipes out libido - so is a cause of ED - but is supposed to be reversible though it wears off very slowly and I am not there yet (that was with Zoladex/goserelin, other medicines may be better). The whole point of radiotherapy is to be pretty nasty to the cancer cells, and there is a certain spillover to adjacent body parts which meant I had a rather sensitive bowel and bladder for the first few weeks as well as feeling generally shattered.

Good luck.

User
Posted 17 Feb 2023 at 10:55
Salvage therapy does not seem to have a standard approach either so the other choices you may face are:

HT or not

Bical or zoladex type

HT duration

Whole pelvis or prostate bed RT

Literally every person whose bio I have read on here has had a different "concoction" of treatments.

Does anyone know what the current best practice is??

User
Posted 17 Feb 2023 at 11:18

I had radical surgery in 2014, recurrence in 2017. 6 weeks of radiotherapy 5x week as well as Bicalutamide for 2 years.

PSA still undetectable. Radiotherapy caused bowel problems/disturbance during but disappeared after treatment stopped.

HT was a b**** though, biggest issue was breast pain and growth - be SURE to insist on Tamoxifen from the very start as it was too late for me once it was eventually prescribed. Lack of libido and loss of body hair was unpleasant but I am pleased to say that all went back to normal after stopping HT and I have no ED, bowel or bladder issues at all now

User
Posted 17 Feb 2023 at 12:10

I had RALP in November 2019 and my PSA was undetectable until October 2021.

Last July I had 20 fractions of SRT to the prostate bed without HT. I didn't have a scan because my post op histology showed a positive margin. 

Side effects were loose bowel movements and urinary urgency which have calmed down significantly. I still get the occasional urge to pee but clenching my pelvic floor until the urge subsides keeps that under control. I took a hit ED-wise during treatment, but it's fine now. 

Good luck,

Kev

Edited by member 17 Feb 2023 at 14:40  | Reason: Typo

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User
Posted 16 Feb 2023 at 10:07

I had 18 months of bicalutimide.  Started it 3 months before salvage radiotherapy.  

My PSA has been <0.006 for 5 years now.  This is the lowest possible reading the machine at my hospital can do.

None of us want further treatment but SRT with HT has been successful for me.

Edited by member 16 Feb 2023 at 10:09  | Reason: To add a sentence

User
Posted 16 Feb 2023 at 10:12

Thank you for that. Have you had any side effects from the salvage treatment. I have heard of ED and possibly blood clots in the bladder.

User
Posted 16 Feb 2023 at 10:28

I had bowel problems which are controlled by medication....a daily imodium.  Hardly a huge issue.

The two treatments made me very tired.

My PSA results indicate that I'm probably completely cured although the NHS won't use that phrase in writing, though my Oncologist said that to my face.

When your time comes, think of my case.  I recommend it to you.  I have my life ahead of me.  Let's pray your treatment brings the same results.

User
Posted 16 Feb 2023 at 12:02

Actually, biochemical recurrence is defined as 0.2 or three successive rises above 0.1. My husband was referred to oncology when his PSA reached 0.12 and he had salvage RT at 0.16

That was nearly 11 years ago - no side effects

Whether or not it is worth waiting for a PSMA scan depends quite a lot on your post-op pathology. If you do decide to request a PSMA scan, you may have to wait until the PSA reaches 0.5 (depending on the hospital or private clinic you are referred to), be prepared to travel and (possibly) to pay for it privately. 

Edited by member 16 Feb 2023 at 12:07  | Reason: Not specified

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

User
Posted 16 Feb 2023 at 22:09
I am someone who had PSA rising following prostatectomy, and had hormone therapy and salvage radiotherapy.

My oncologist said the same as LynEyre reports above. In her opinion PSMA was unlikely to be meaningful with PSA less than 0.5 - but the salvage RT was likely to be most effective if started sooner than that. I was happy to start RT without a scan.

Certainly there are side effects, as there were with surgery. The hormone therapy wipes out libido - so is a cause of ED - but is supposed to be reversible though it wears off very slowly and I am not there yet (that was with Zoladex/goserelin, other medicines may be better). The whole point of radiotherapy is to be pretty nasty to the cancer cells, and there is a certain spillover to adjacent body parts which meant I had a rather sensitive bowel and bladder for the first few weeks as well as feeling generally shattered.

Good luck.

User
Posted 17 Feb 2023 at 10:55
Salvage therapy does not seem to have a standard approach either so the other choices you may face are:

HT or not

Bical or zoladex type

HT duration

Whole pelvis or prostate bed RT

Literally every person whose bio I have read on here has had a different "concoction" of treatments.

Does anyone know what the current best practice is??

User
Posted 17 Feb 2023 at 11:18

I had radical surgery in 2014, recurrence in 2017. 6 weeks of radiotherapy 5x week as well as Bicalutamide for 2 years.

PSA still undetectable. Radiotherapy caused bowel problems/disturbance during but disappeared after treatment stopped.

HT was a b**** though, biggest issue was breast pain and growth - be SURE to insist on Tamoxifen from the very start as it was too late for me once it was eventually prescribed. Lack of libido and loss of body hair was unpleasant but I am pleased to say that all went back to normal after stopping HT and I have no ED, bowel or bladder issues at all now

User
Posted 17 Feb 2023 at 12:10

I had RALP in November 2019 and my PSA was undetectable until October 2021.

Last July I had 20 fractions of SRT to the prostate bed without HT. I didn't have a scan because my post op histology showed a positive margin. 

Side effects were loose bowel movements and urinary urgency which have calmed down significantly. I still get the occasional urge to pee but clenching my pelvic floor until the urge subsides keeps that under control. I took a hit ED-wise during treatment, but it's fine now. 

Good luck,

Kev

Edited by member 17 Feb 2023 at 14:40  | Reason: Typo

 
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