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recurrence after radical prostatectomy

User
Posted 19 Feb 2019 at 20:34

Grateful for any thoughts on my situation as below. I’ve been reading quite a few posts about others in similar circumstances but there do seem to be so many nuances.

I’m 67 and had a RP in May 2015. Pre op I had Gleason 3+4, staged 2C with a large (95c) prostate. My PSA was 7. I had nerve sparing on one side and post op there were negative margins with Gleason uprated to 3+4, with tertiary 5. My first PSA post op was 0.13. The consultant thought this a glitch and the next soon after was <0.03. It stayed that way until May 2018 when it was 0.08 followed by 0.08 in August and 0.11 in November. I’ve just had another blood test and am seeing the consultant next week.

If the PSA is the same or higher I assume that I should be looking for an early meeting with the oncologist with a view to having RT. I know that the measure of recurrence is 0.2 but many on here seem to go for RT sooner than my 0.11 on the basis that early intervention is more successful? Should this be with HT or not? Should I insist on a scan beforehand and if so is a PET choline scan ok or should I be looking for a F18 PSMA or 68 Gallium scan?

Thanks

User
Posted 19 Feb 2019 at 22:52

You’ll get various opinions on this, especially as your psa results are from the super sensitive psa test.  I was in the same boat as you.  if you haven't found it already, take a look at my thread - PSMA scan for a PSA of 0.023.

Ulsterman

User
Posted 19 Feb 2019 at 23:27
If it has risen from 0.11 then I think you should accept nothing less than a referral to oncology to discuss possible next steps. If it has risen, it is behaving like a recurrence in the prostate bed in which case salvage RT is sensible, especially with a tertiary 5.

There are small number of oncos who seem to feel that HT is unnecessary with salvage RT but the vast majority will recommend somewhere between 6 months and 2 years of hormones.

With the exception of Ulsterman, biochemical recurrence after surgery is defined in the UK as a PSA over 0.2 or three successive rises above 0.1 so you are not quite there yet but I would certainly want to be on the onco's books now rather than in May / June.

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

User
Posted 19 Feb 2019 at 23:51

Hi Clive,  I've no experience of this, but I read your first post which is interesting and thought it would be better for it to be in your profile.

While i was thinking about your period when your psa didn't rise last year I notice Lyn has replied with a more definitive statement than I was going to make.  Presumably your psa tests are done at the same assay.

I think I'd be wanting RT if your next reading is going up by much, say 0.14 or more, and if it's thought to be in the prostate bed probably not want a scan if it delayed things.  I'd also not want hormones in case my body gets used to them and it lessens  the time I can have them later, unless they assure or persuade me otherwise.  I'd definitely want to be out of the surgeons hands and into where RT/scans are given as Lyn has said.  All the best for your appointment.

Edited by member 19 Feb 2019 at 23:53  | Reason: Not specified

User
Posted 20 Feb 2019 at 08:43

I agree with Lyn in that this is behaving like a local recurrence.

I had a Gadolinium enhanced MRI and an F18 Choline PET scan which both showed up where any local recurrence was and allowed the oncologist to plan the salvage RT beams more precisely.

If I were you I would be looking to see an uro oncologist to discuss this.

My recurrence was high risk so i have had three months HT before SRT followed by 2 years of HT but in your case it might be no HT or HT for a few months before SRT.  The oncologst will decide that based on your individual situation.

Let us know how you get on at your appointment.

Best wishes.

Ido4

User
Posted 03 Mar 2019 at 11:29

I see you have not yet discussed this slowly progressing cancer with an oncologist. I would.

It seems your surgeon did a good job in 2015 and is unlikely to be of very much more use to you in the future.

Best of luck anyway.

Cheers, John.

Edited by member 03 Mar 2019 at 12:10  | Reason: Not specified

User
Posted 03 Mar 2019 at 17:12

Hi Clivepen,

Yes zero rise or less would have been great.   A rise of 0.01 is a bit in between.  If it had been zero it would have broken the chain that would enable treatment, i.e. 3 consecutive rises above 0.1.  That is if you're now feeling uncomfortable about whether you want/need early treatment.

It could be that you wait the 6 months and go with the flow, or ask to see the oncologist at 6 months. Another option is to ask for an earlier 3 month psa test and then ask to see the oncologist or to ask to see the oncologist at an appointment in 3 months.

Although your psa is a bit erratic and it could be that you'll get no increase and lose the consecutive rises at 3 months whereas at 6 months if it's really rising there should be a rise.   If you get 3 rises out of 4 that must count.

Trying to think what I'd do and I guess I'd be glad it wasn't rising faster but thinking ahead wanting to be ready.  I guess the best treatment is to act as soon as possible so asking for a 3 month psa test and seeing the oncologist at the next appointment sounds a positive option unless you feel you could persuade an oncologist to take action on existing results which might be a bit optimistic.    It's hard to put myself exactly in the position although it's something that could happen to many of us.  Let us know your decision.  All the best, Peter

User
Posted 03 Mar 2019 at 17:22
Gggggrrrrr. Urologist can afford to be relaxed about it, it isn't his prostate or his life plus as soon as he refers you to oncology he has an official recurrence to report in his statistics.

All the research is that the sooner you get salvage RT the better your chance of achieving remission. If you were my man, we would be seeing the onco now.

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

User
Posted 03 Mar 2019 at 17:54

C

I was often reassured that my slowly rising PSA might level off at 0.1. As it turned out three years after my surgery my PSA was 0.23 and I started SRT.  You may not get treatment until you breech the 0.2 level but  take the advice and get to see an oncologist.

Thanks Chris

User
Posted 05 Mar 2019 at 08:25

Morning Clive, I had my RP July 2015 and the post op psa tests rose uniformly, 0.02/0.04/0.06/0.08 and it was at this point that my urologist who did the op said that if the next test was 0.1 or above I would be referred to the oncologist with a view to having SRT. It did indeed go up to 0.12. The Oncologist stated that early intervention was favourable for a cure. I had the SRT in Feb/March 2018. I agree with the other posts that recommend pursuing this further. All the best mate, take care. Paul.

User
Posted 23 Nov 2019 at 14:34
I think you have read it upside down Andy - the onco has suggested a 70% chance that he will be disease free in 5 years, not that there is a 70% chance of recurrence in 5 years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2019 at 14:40

Clive, the bicalutimide will probably be just for 2 or 4 weeks; you should ask him the next time you see him how long he plans on you having the Prostap for ... oncos can plump for anything from 6 to 36 months. There is absolutely no doubt that HT with the RT provides a much better chance of success, particularly if you have the HT for at least 3-6 months before the RT begins. However, recent data suggests that there is no additional benefit from extending it beyond 18 months.

With a slowly increasing PSA you have classic signs of stray cells left in the prostate bed, which is where the RT will be designed to target anyway. They will also use data from your post-op pathology to predict where the stray cells might be, if the pathology had raised any potential issues.

Edited by member 23 Nov 2019 at 14:41  | Reason: Not specified

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

User
Posted 24 Nov 2019 at 15:04
I have two friends who had prostatectomies about the same time as me (June 2018) carried out by two of the ‘best surgeons’ money can buy. Not Professor Whocannotbenamedhere, incidentally.

They both had recurrence, and had umpteen fractions of RT and their PSA is now undetectable. One told me he has erectile dysfunction like me, the other? I didn't think it was appropriate to ask him by text.

Another friend (they come out of the woodwork don’t they?) aged 63, has just had surgery in September, but his PSA is 0.2 post op, and he is still in nappies.

His wife has told him not to bother with any further treatment to which I replied ‘Why, is she looking at a big life insurance payout when you croak after a long, lingering, painful, demise?’

So I hope, with the testimony of my two other mates - who don’t know each other - to persuade him to go for adjuvant radiotherapy.

Cheers, John.

User
Posted 24 Nov 2019 at 15:47
It's interesting how with the benefit of analysis of studies revisions and refinements are made to practices for the advantage of patients.

Consultants as well as patients are on a learning curve.

Barry
User
Posted 24 Nov 2019 at 19:55

My PSA rose steadily to 0.10 (two years post-op), just started bicalutamide and will have SRT probably January or so. Bicalutamide doesn't seem to affect me very much so I'll likely take the full two year course. It significantly improves the effectiveness of SRT. Had a PSMA-PET scan which didn't show anything, my understanding is that it is unlikely to show anything, but if it does it can be hugely important, so worth taking. (See http://jnm.snmjournals.org/content/59/5/789.full.pdf)

Note the Tendulkar et al study (http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/) suggests it is slightly better to have SRT earlier, say around 0.10, rather than later. I understand currently SRT is likely to have better results than suggested by the Tendulkar study, because with today's better PSA measurements and PSMA-PET scans incurable cases that would have got SRT before won't get it now. Also SRT techniques probably improved. 

Edited by member 24 Nov 2019 at 20:01  | Reason: Not specified

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User
Posted 19 Feb 2019 at 22:52

You’ll get various opinions on this, especially as your psa results are from the super sensitive psa test.  I was in the same boat as you.  if you haven't found it already, take a look at my thread - PSMA scan for a PSA of 0.023.

Ulsterman

User
Posted 19 Feb 2019 at 23:27
If it has risen from 0.11 then I think you should accept nothing less than a referral to oncology to discuss possible next steps. If it has risen, it is behaving like a recurrence in the prostate bed in which case salvage RT is sensible, especially with a tertiary 5.

There are small number of oncos who seem to feel that HT is unnecessary with salvage RT but the vast majority will recommend somewhere between 6 months and 2 years of hormones.

With the exception of Ulsterman, biochemical recurrence after surgery is defined in the UK as a PSA over 0.2 or three successive rises above 0.1 so you are not quite there yet but I would certainly want to be on the onco's books now rather than in May / June.

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

User
Posted 19 Feb 2019 at 23:51

Hi Clive,  I've no experience of this, but I read your first post which is interesting and thought it would be better for it to be in your profile.

While i was thinking about your period when your psa didn't rise last year I notice Lyn has replied with a more definitive statement than I was going to make.  Presumably your psa tests are done at the same assay.

I think I'd be wanting RT if your next reading is going up by much, say 0.14 or more, and if it's thought to be in the prostate bed probably not want a scan if it delayed things.  I'd also not want hormones in case my body gets used to them and it lessens  the time I can have them later, unless they assure or persuade me otherwise.  I'd definitely want to be out of the surgeons hands and into where RT/scans are given as Lyn has said.  All the best for your appointment.

Edited by member 19 Feb 2019 at 23:53  | Reason: Not specified

User
Posted 20 Feb 2019 at 08:43

I agree with Lyn in that this is behaving like a local recurrence.

I had a Gadolinium enhanced MRI and an F18 Choline PET scan which both showed up where any local recurrence was and allowed the oncologist to plan the salvage RT beams more precisely.

If I were you I would be looking to see an uro oncologist to discuss this.

My recurrence was high risk so i have had three months HT before SRT followed by 2 years of HT but in your case it might be no HT or HT for a few months before SRT.  The oncologst will decide that based on your individual situation.

Let us know how you get on at your appointment.

Best wishes.

Ido4

User
Posted 03 Mar 2019 at 10:43

Thanks for these replies. This week I met the consultant surgeon who did my RP. So far his team have been saying that the cancer’s back and I will need radiotherapy, it was just a question of when. My PSA’s risen very slightly this time to 0.12 and he was very relaxed about it. His view is that it is still very low. Because of this and what he sees as a slow progression he said that the oncologists won’t want to see me yet and he’s booked me in to see him in six months after another PSA test. He said that I might never need radiotherapy. Left feeling a bit confused. It’s great that there’s little increase in the PSA and that he was so positive. But I also wonder whether he is being a bit too positive and too conservative in his approach.

User
Posted 03 Mar 2019 at 11:29

I see you have not yet discussed this slowly progressing cancer with an oncologist. I would.

It seems your surgeon did a good job in 2015 and is unlikely to be of very much more use to you in the future.

Best of luck anyway.

Cheers, John.

Edited by member 03 Mar 2019 at 12:10  | Reason: Not specified

User
Posted 03 Mar 2019 at 17:12

Hi Clivepen,

Yes zero rise or less would have been great.   A rise of 0.01 is a bit in between.  If it had been zero it would have broken the chain that would enable treatment, i.e. 3 consecutive rises above 0.1.  That is if you're now feeling uncomfortable about whether you want/need early treatment.

It could be that you wait the 6 months and go with the flow, or ask to see the oncologist at 6 months. Another option is to ask for an earlier 3 month psa test and then ask to see the oncologist or to ask to see the oncologist at an appointment in 3 months.

Although your psa is a bit erratic and it could be that you'll get no increase and lose the consecutive rises at 3 months whereas at 6 months if it's really rising there should be a rise.   If you get 3 rises out of 4 that must count.

Trying to think what I'd do and I guess I'd be glad it wasn't rising faster but thinking ahead wanting to be ready.  I guess the best treatment is to act as soon as possible so asking for a 3 month psa test and seeing the oncologist at the next appointment sounds a positive option unless you feel you could persuade an oncologist to take action on existing results which might be a bit optimistic.    It's hard to put myself exactly in the position although it's something that could happen to many of us.  Let us know your decision.  All the best, Peter

User
Posted 03 Mar 2019 at 17:22
Gggggrrrrr. Urologist can afford to be relaxed about it, it isn't his prostate or his life plus as soon as he refers you to oncology he has an official recurrence to report in his statistics.

All the research is that the sooner you get salvage RT the better your chance of achieving remission. If you were my man, we would be seeing the onco now.

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

User
Posted 03 Mar 2019 at 17:54

C

I was often reassured that my slowly rising PSA might level off at 0.1. As it turned out three years after my surgery my PSA was 0.23 and I started SRT.  You may not get treatment until you breech the 0.2 level but  take the advice and get to see an oncologist.

Thanks Chris

User
Posted 05 Mar 2019 at 08:25

Morning Clive, I had my RP July 2015 and the post op psa tests rose uniformly, 0.02/0.04/0.06/0.08 and it was at this point that my urologist who did the op said that if the next test was 0.1 or above I would be referred to the oncologist with a view to having SRT. It did indeed go up to 0.12. The Oncologist stated that early intervention was favourable for a cure. I had the SRT in Feb/March 2018. I agree with the other posts that recommend pursuing this further. All the best mate, take care. Paul.

User
Posted 23 Nov 2019 at 13:07

Thanks for all your responses.

Since my last post my PSA increased to 0.14 when I asked to see the oncologist. I saw him a few days ago and my PSA has gone up to 0.16. I was expecting to have to push for SRT but he told me that the hospital’s 0.2 threshold had changed now following national trials, which indicate that it is better to start SRT at levels below 0.2. This will be delayed as I have a hernia problem and I need this operating on first. But he has given me a prescription to start HT straightaway. He did not say for how long. This is Bicalutamide 50mg and monthly ongoing injections of tryptorelin/prostap/goserelin. He said having HT as well is now standard good practice even with a lowish PSA and late, slow movement. He says he won’t be scanning as it won’t find anything at PSA level. He said that the remission rate is 70% after 5 years

So I’m reeling a bit after my previous conservative visits. I know that everyone is different but it generally sounds like SRT is not too bad for most men but that HT is more hard core and that the side effects are often much more severe and can be longer lasting. I assume the remission rates with HT are much better so the side effects are worth putting up with? And is it worth trying to get one of the newer scans – it seems that they can sometimes spot cancer at this PSA level and allow more focused SRT?

User
Posted 23 Nov 2019 at 13:46

Originally Posted by: Online Community Member
He said that the remission rate is 70% after 5 years

That sounds rather high - perhaps those are his personal figures :-(

I thought it was nearer 25%, and rising to 50% for high risk patients (which you weren't).

User
Posted 23 Nov 2019 at 14:34
I think you have read it upside down Andy - the onco has suggested a 70% chance that he will be disease free in 5 years, not that there is a 70% chance of recurrence in 5 years.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 23 Nov 2019 at 14:40

Clive, the bicalutimide will probably be just for 2 or 4 weeks; you should ask him the next time you see him how long he plans on you having the Prostap for ... oncos can plump for anything from 6 to 36 months. There is absolutely no doubt that HT with the RT provides a much better chance of success, particularly if you have the HT for at least 3-6 months before the RT begins. However, recent data suggests that there is no additional benefit from extending it beyond 18 months.

With a slowly increasing PSA you have classic signs of stray cells left in the prostate bed, which is where the RT will be designed to target anyway. They will also use data from your post-op pathology to predict where the stray cells might be, if the pathology had raised any potential issues.

Edited by member 23 Nov 2019 at 14:41  | Reason: Not specified

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

User
Posted 24 Nov 2019 at 13:40

Thanks for this Lyn - very helpful as always

User
Posted 24 Nov 2019 at 15:04
I have two friends who had prostatectomies about the same time as me (June 2018) carried out by two of the ‘best surgeons’ money can buy. Not Professor Whocannotbenamedhere, incidentally.

They both had recurrence, and had umpteen fractions of RT and their PSA is now undetectable. One told me he has erectile dysfunction like me, the other? I didn't think it was appropriate to ask him by text.

Another friend (they come out of the woodwork don’t they?) aged 63, has just had surgery in September, but his PSA is 0.2 post op, and he is still in nappies.

His wife has told him not to bother with any further treatment to which I replied ‘Why, is she looking at a big life insurance payout when you croak after a long, lingering, painful, demise?’

So I hope, with the testimony of my two other mates - who don’t know each other - to persuade him to go for adjuvant radiotherapy.

Cheers, John.

User
Posted 24 Nov 2019 at 15:47
It's interesting how with the benefit of analysis of studies revisions and refinements are made to practices for the advantage of patients.

Consultants as well as patients are on a learning curve.

Barry
User
Posted 24 Nov 2019 at 19:55

My PSA rose steadily to 0.10 (two years post-op), just started bicalutamide and will have SRT probably January or so. Bicalutamide doesn't seem to affect me very much so I'll likely take the full two year course. It significantly improves the effectiveness of SRT. Had a PSMA-PET scan which didn't show anything, my understanding is that it is unlikely to show anything, but if it does it can be hugely important, so worth taking. (See http://jnm.snmjournals.org/content/59/5/789.full.pdf)

Note the Tendulkar et al study (http://riskcalc.org/ProstateCancerAfterRadicalProstatectomyNew/) suggests it is slightly better to have SRT earlier, say around 0.10, rather than later. I understand currently SRT is likely to have better results than suggested by the Tendulkar study, because with today's better PSA measurements and PSMA-PET scans incurable cases that would have got SRT before won't get it now. Also SRT techniques probably improved. 

Edited by member 24 Nov 2019 at 20:01  | Reason: Not specified

User
Posted 25 Nov 2019 at 21:58

Thanks for all your responses.  I'm seeing the uro oncology nurse for some more information, but will be getting on with it.

 
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