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PSA detectable 3 1/3 years after RP

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User
Posted 01 Dec 2021 at 09:24

I had unilateral nerve-sparing RP 3 years and 4 months ago.  Gleason 7 (3+4).  T2 with microscopic T3a, but required no further treatment. Was told about percentage of recurrence within first 5 years, but reassured that any such thing would be treatable and not affect my life expectancy

PSA post RP was initially 0.01, then 0.03 at 18 months and at 2 years, then 0.05, then 0.08 4 months ago, and now 0.13, so am due  a PSMA PET Scan.

I am naturally scared, and know that nobody can give any guarantees and reassurance, but would still welcome comments and advice, especially from anyone who's had or is having a similar experience.

Thanks,

Peter

 

 

User
Posted 01 Dec 2021 at 10:29
I think the standard treatment options available to you will be Hormone Therapy and Radio Therapy. The PET-PSMA scan should show Dan Dare where to point his ray-gun, to kill off any metastases, that’s if they are big enough to show up on the scan.There are other medical treatments available in the tool-box as well.

If you look at the prognostication Nomograms, PCa is more likely to return years later than not, and in my case the fifteen year forecast is 60-70% chance of recurrence, by which time I might have died of something else!

I wouldn’t worry, as like most men, you’re likely to die with it, not of it.

Best of luck!

Cheers, John.

User
Posted 01 Dec 2021 at 11:05
As Bollinge says, this is very common - about 30% of men have a recurrence at some point after prostatectomy. The good news is that the way your PSA is behaving indicates that this is some cancer cells left behind in the prostate bed (probably linked to your post-op upgrade to T3a) so salvage RT is a sensible next step. My husband had his RP 12 years ago and salvage RT 10 years ago - his PSA is happily bobbing along at 0.1 so the salvage treatment seems to have done its job.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 19 Dec 2021 at 22:02
The hormone therapy usually starts very quickly and the radiotherapy is 3 or 6 months later - the idea is that the hormone treatment starves the cancer and weakens it, which makes it more susceptible to the radiotherapy.

Most likely if you have the injections that you will have tablets as well for the first 2 - 4 weeks to prevent tumour flare. If you stay with tablets rather than injections, some side effects such as breast pain, breast growth & breathlessness are more likely - if you have injections, muscle pain and fatigue are more likely. It usually comes down to onco preference rather than patient choice.

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

User
Posted 20 Dec 2021 at 23:38
The HT may well extend beyond the RT but this and the length of time can depend on your Oncologist and how s/he views your case.
Barry
User
Posted 21 Dec 2021 at 12:26
Hi Peter

I'm in the same boat as you. RARP in Aug 2020. PSA has risen steadily since the op. It hit 0.18 recently and I had a PSMA ( Ga68) scan which showed an 11mm lesion in one of my pelvic lymph nodes.

4 weeks of bicalutamide and then Zoladex implant in gut. I have my CT scan for SRT on 29th Dec with the treatment scheduled for mid Jan 2022. I have had little in the way of side effects ( to date). The onco said that I will be on Zoladex for 18 months to 2 years post treatment ( I think LynEyre gave a very good explanation as to why they do this recently)

User
Posted 04 May 2022 at 08:02

Hi francij1,

I had discussed the options with the Onco previously, when it looked like my PSA was getting close to a level which she felt required treatment. I voiced particular concern about breast growth, and - at the time - she said I could choose tablets or injections based on which side effects were most "acceptable" to me. I didn't actually voice a prefernece, but she may have based her decision on those conversations. In any case, she says 6 months is a short time for any serious longer term side effects to manifest themselves.

User
Posted 27 Aug 2022 at 17:33

Hi everyone,

In case anyone's interested in my trajectory, I'd like to update all of you who've given me such much needed, helpful and very much appreciated support,

After my PSA reached 0.17 in May 2022, about 3 1/2 years after my radical prostatectomy, my oncologist opted for 6 months on hormones (4 weeks of Bicalutamide tablets, followed by 2 Decapeptyl injections, each lasting 3 months, starting 2 weeks after taking the tablets), and 33 days of radiotherapy.

I now have 9 days of radiotherapy left, and side effects so far have been minimal.

Hormones: the lack of testosterone has had the obvious effect of reduced libido, although  - if I'm honest - my head is still turned by women. But my eretcile abilties are practically inexistent.  Very bearable hot flushes & possible effect on phyiscal ability (I go swimming for an hour twice a week, and have felt some muscle strain).

Radiography side effects: Possible fatigue, but on and off, loosened stool and rectum irritation.

Everyone at UCLH has been kind, sensitive and supportive.

Let's see how the the remaining 9 sessions go.

Edited by member 27 Aug 2022 at 21:28  | Reason: Dropping repetition

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User
Posted 01 Dec 2021 at 10:29
I think the standard treatment options available to you will be Hormone Therapy and Radio Therapy. The PET-PSMA scan should show Dan Dare where to point his ray-gun, to kill off any metastases, that’s if they are big enough to show up on the scan.There are other medical treatments available in the tool-box as well.

If you look at the prognostication Nomograms, PCa is more likely to return years later than not, and in my case the fifteen year forecast is 60-70% chance of recurrence, by which time I might have died of something else!

I wouldn’t worry, as like most men, you’re likely to die with it, not of it.

Best of luck!

Cheers, John.

User
Posted 01 Dec 2021 at 11:05
As Bollinge says, this is very common - about 30% of men have a recurrence at some point after prostatectomy. The good news is that the way your PSA is behaving indicates that this is some cancer cells left behind in the prostate bed (probably linked to your post-op upgrade to T3a) so salvage RT is a sensible next step. My husband had his RP 12 years ago and salvage RT 10 years ago - his PSA is happily bobbing along at 0.1 so the salvage treatment seems to have done its job.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Dec 2021 at 12:21

Many thanks, Bollinge, and thank you for the reassurance.

Those prognostication Nomograms really are interesting.

All the very best to you!

Peter

User
Posted 02 Dec 2021 at 12:23

Thank you very much, LynEyre,

Your reply has also given me some reassurance.

I very much hope that things continue to go well for your husband, and that you both stay well.

Peter

User
Posted 19 Dec 2021 at 18:27

After my PSMA PET Scan didn't show up anything, the conclusion is that the remaining rogue cells are in the prostate bed. I will most likely be offered sRT and Hormone Treatment, either tablets or injections.

Does anyone have any comments on the pros and cons of tablets and injections?

Also, are sRT and HT usually given at the same time? 

Edited by member 19 Dec 2021 at 18:56  | Reason: Not specified

User
Posted 19 Dec 2021 at 22:02
The hormone therapy usually starts very quickly and the radiotherapy is 3 or 6 months later - the idea is that the hormone treatment starves the cancer and weakens it, which makes it more susceptible to the radiotherapy.

Most likely if you have the injections that you will have tablets as well for the first 2 - 4 weeks to prevent tumour flare. If you stay with tablets rather than injections, some side effects such as breast pain, breast growth & breathlessness are more likely - if you have injections, muscle pain and fatigue are more likely. It usually comes down to onco preference rather than patient choice.

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

User
Posted 20 Dec 2021 at 21:12

Many thanks, LynEyre. 

User
Posted 20 Dec 2021 at 23:38
The HT may well extend beyond the RT but this and the length of time can depend on your Oncologist and how s/he views your case.
Barry
User
Posted 21 Dec 2021 at 08:42

Thanks, Barry!

User
Posted 21 Dec 2021 at 12:26
Hi Peter

I'm in the same boat as you. RARP in Aug 2020. PSA has risen steadily since the op. It hit 0.18 recently and I had a PSMA ( Ga68) scan which showed an 11mm lesion in one of my pelvic lymph nodes.

4 weeks of bicalutamide and then Zoladex implant in gut. I have my CT scan for SRT on 29th Dec with the treatment scheduled for mid Jan 2022. I have had little in the way of side effects ( to date). The onco said that I will be on Zoladex for 18 months to 2 years post treatment ( I think LynEyre gave a very good explanation as to why they do this recently)

User
Posted 22 Dec 2021 at 21:47

Hi Chris, and thanks for replying.

Good to hear you've been virtually spared of HT side effects. 

My treatment plan will be decided after another PSA test in early February, when I expect my PSA to have risen futher from 0.13 (it was 0.08 four months earlier). The current idea is to put me on HT for 6 months and give me 32 days of radiotherapy.

I wish you all the best for your CT scan for SRT at the end of the month!

 

User
Posted 03 May 2022 at 18:17

My PSA today was 0.17, up from 0.13 two months ago. Based on continuing upward trend, Oncologist says we should start treatment, which I agree with.

Starting tomorrow on 28 days of Bicalutamide 50mg tablets, followed in two weeks time by Decapeptyl SR 11.25mg injection, with a 2nd injection three months later, totalling just over 6 months of Hormone Treatment.

Salvage Radiotherapy to prostate bed & pelvic lymph nodes due in about three months' time.

In a way I'm just glad to get on with it.

User
Posted 04 May 2022 at 00:13
Did your onco say why he was using Decapeptyl long term instead of bicalutimide? Mine insists bicalutimide alone is better in the salvage role but hasn't elaborated. I will push him if my next PSA pushes me down the SRT route.
User
Posted 04 May 2022 at 08:02

Hi francij1,

I had discussed the options with the Onco previously, when it looked like my PSA was getting close to a level which she felt required treatment. I voiced particular concern about breast growth, and - at the time - she said I could choose tablets or injections based on which side effects were most "acceptable" to me. I didn't actually voice a prefernece, but she may have based her decision on those conversations. In any case, she says 6 months is a short time for any serious longer term side effects to manifest themselves.

User
Posted 27 Aug 2022 at 17:33

Hi everyone,

In case anyone's interested in my trajectory, I'd like to update all of you who've given me such much needed, helpful and very much appreciated support,

After my PSA reached 0.17 in May 2022, about 3 1/2 years after my radical prostatectomy, my oncologist opted for 6 months on hormones (4 weeks of Bicalutamide tablets, followed by 2 Decapeptyl injections, each lasting 3 months, starting 2 weeks after taking the tablets), and 33 days of radiotherapy.

I now have 9 days of radiotherapy left, and side effects so far have been minimal.

Hormones: the lack of testosterone has had the obvious effect of reduced libido, although  - if I'm honest - my head is still turned by women. But my eretcile abilties are practically inexistent.  Very bearable hot flushes & possible effect on phyiscal ability (I go swimming for an hour twice a week, and have felt some muscle strain).

Radiography side effects: Possible fatigue, but on and off, loosened stool and rectum irritation.

Everyone at UCLH has been kind, sensitive and supportive.

Let's see how the the remaining 9 sessions go.

Edited by member 27 Aug 2022 at 21:28  | Reason: Dropping repetition

User
Posted 27 Aug 2022 at 19:00

Peter, all the best with the remaining treatment. I had SRT without HT and don't recall any fatigue. Although it did not show anything I am pleased to see you had the benefit of a PSMA scan.

Thanks Chris 

 

User
Posted 27 Aug 2022 at 21:32

Thanks Chris,

I very much hope that your treatment proves to have been successful.

Good to hear you had no fatigue.

All the very best,

Peter

User
Posted 27 Aug 2022 at 22:31

Seems like it's going pretty well.  All the best, keep us posted.

 
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