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PSA rising after 16 years

User
Posted 09 Jun 2025 at 15:40

Lesley, sorry to hear of the return, I think a conversation with one of the prostate cancer nurses on this site would be useful.

Thanks Chris 

Edited by moderator 12 Jun 2025 at 18:19  | Reason: Not specified

User
Posted 09 Jun 2025 at 20:52

 

Adrian
I did ask this but consultant seemed doubtful.  I also asked which salvage treatment had the best outcome in terms of efficacy and least collateral damage…..Was told there’s not currently enough data to come to a conclusion.

Lesley

Edited by member 09 Jun 2025 at 20:53  | Reason: Typo

User
Posted 12 Jun 2025 at 00:12

Originally Posted by: Online Community Member
I also asked which salvage treatment had the best outcome in terms of efficacy and least collateral damage…..Was told there’s not currently enough data to come to a conclusion.

Lesley, for what it's worth there were some posts on here a little while back by jfd who, as a doctor with personal experience of prostate cancer recurrence after ~10 years was looking at SBRT. He reckoned that he knew of several examples of men being treated with SBRT in Australia but he too was seeking more information. For now, it's as you say, not enough data out there to come to any conclusions. Given the RO-PIP trial is randomised you wouldn't get a choice between SBRT and HDR BT. Anyone know if SBRT is freely available from the NHS in this situation?

I couldn't find the threads started by jfd. They might still exist or they might have been surgically removed because it all got a bit heated.

 

On the broader topic of whether the cancer is new or recurrent, maybe it's just not possible to tell, though ten years seems way beyond the normal lifespan of a prostate cancer cell.

Adrian, those figure look a bit pessimistic. A BMJ article on the  PIP trial works on 13% recurrence within 10 years. Interesting that they're only looking at recruiting 60 people over 2 years for the study and the results won't be in for many years.

 

Jules

Edited by member 12 Jun 2025 at 01:22  | Reason: Not specified

User
Posted 18 Jul 2025 at 10:09
Hello Lesley (Ladybo2). Sorry to read of your husband's recurrence, particularly as it is of a similar pathway to my own. A small % of men do develop a recurrence in the 10 year post treatment phase. The incidence of recurrence may be either long standing micro mets in pelvic nodes as was the case with me, and/or a new tumour in the prostate which was also the case with me. It is well accepted that a correlation twixt ageing and PCa velocity exists. The older you are the less virulent PCa progression seem's to be and visa versa of course. Give that both your husband and I had EBRT to our prostate all those years ago, neither of us can have further radiation to the prostate (life time dose, in my case it was 72 Gy). I should say that was the accepted wisdom prevailing. Notwithstanding, there are trials currently aimed at radiating small new PCa localised tumours. The precision of the beam/s being the key factor. It will however be several years before, if and when, that practice goes mainstream. In the meantime the focal therapies you mention may indeed be appropriate, effects of libido of course, taken into consideration. So while a PCa recurrence after such a long period of remission is not a welcome friend, it is not our worst enemy either. I suspect your husband will be well looked after and around for many years to come. Even if he were to develop mets at a later stage such as I have, stage 4 metastatic PCa can be well managed for many years with a reasonable quality of life. My best wishes to you Lesley.
User
Posted 18 Jul 2025 at 13:24

As regards life time dose of EBRT, Lesley's husband had 20 fractions under one arm of the CHHiP trial. (I can't remember the precise figure without going through my papers but it was about 3 Gy a fraction or slightly under, so lets say about 60 Gy in total, giving a calculated similar effect to the standard 37 fractions of 2 Gy totalling 74 Gy). So l believe there is potential here for Lesley's husband to have further radiation within his life time dose providing the paths over which the original EBRT were delivered can be avoided.

It was a great disappointment to me when my first HIFU failed to completely vaporise the tumour in my Prostate but the second application seems to have done the job, at least for the time being. The side effects of HIFU are generally mild and it is an easy procedure. The tumour has to be where the HIFU probe can reach otherwise Cryotherapy or Nanoknife (Irreversible Electroporation) are alternative Focal Treatments in the UK. Interestingly, a variant of HIFU called Tulsa Pro is being done on a small scale in some countries. This is where the probe is fed through the Ureter and the tumour is ablated outwards from within the Prostate rather than from outside the Prostate inwards via the Rectum as with standard HIFU. So with Tulsa Pro anywhere in the Prostate can be reached. I don't know whether Tulsa Pro has been used as Salvage Treatment yet and only time will tell whether this or other forms of Focal Treatment such as Focal Laser Ablation (FLA) among other focal options will be better. Only time will tell and it might be horses for courses as with other forms of treatment. A leading UK Focal Specialist says there is a limit to the number of types of focal treatment he can master and he uses what he is most comfortable with.

Edited by member 18 Jul 2025 at 21:45  | Reason: Not specified

Barry
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User
Posted 09 Jun 2025 at 15:58

Hi Lesley,

Sorry it's returned after all those years.  I haven't heard of that before.

I can't offer help on that but suggest you change your screen name to an anonymous one and not your email as it's said these posts can be found on line.

Regards  Peter

User
Posted 09 Jun 2025 at 17:52

Thank you Chris and Peter for your replies.

The consultant was very good explaining the options but thought it would be useful to have lived experiences.  Good advice to seek out the prostate nurses though as the more info we have the better.  

Not sure why my user name is my email address as my account shows Ladybo ….. will investigate - thank you!

Lesley

User
Posted 09 Jun 2025 at 18:03

Hi Peter,

It was a bit of a surprise for it to return but the consultant said it was unknown why…. but it’s thought the original EBRT put some of the cancer cells into a long sleep/ dormant state and it has now reactivated.  We are fortunate it is in the prostate with no current spread.  Dave is now 73 and removal has been ruled out due to age and possibly collateral damage.

Lesley

User
Posted 09 Jun 2025 at 18:34

Originally Posted by: Online Community Member
Sorry it's returned after all those years.  I haven't heard of that before.

Is there not always a chance, rather than recurrence as such, that a new prostate tumour could develope after EBRT?

Edited by member 09 Jun 2025 at 21:13  | Reason: Typo

User
Posted 09 Jun 2025 at 20:23

I think old Barry https://community.prostatecanceruk.org/default.aspx?g=profile&u=2428

Has experienced this. EBRT years ago, followed by HIFU and then a second round of HIFU.

Dave

User
Posted 09 Jun 2025 at 20:52

 

Adrian
I did ask this but consultant seemed doubtful.  I also asked which salvage treatment had the best outcome in terms of efficacy and least collateral damage…..Was told there’s not currently enough data to come to a conclusion.

Lesley

Edited by member 09 Jun 2025 at 20:53  | Reason: Typo

User
Posted 10 Jun 2025 at 01:28

Hi Lesley,

Sorry your husband needs salvage treatment due to failure of Primary EBRT. Unfortunately, this sometime happens even after a number of years. Some cancer cells can be radio resistant and survive to become a challenge in time. If this is the case here, I would ask my Consultant whether further radiation might work better the second time, albeit administered in different ways as proposed. Could it be that an alternative way of attacking the cancer cells using a Focal Treament might be more successful? I would suggest hubby gets referred to UCLH for an opinion, which the Royal Marsden did for me, as I was under their care at the time having had failed EBRT. It did take two administrations of Focal Treatment, in my case HIFU, to irradicate the cancer cells - click on my Avatar for details.

At the time, Focal treatment was the only non systemic way of treating failed EBRT other than Prostatectomy. Not all surgeons will do the later due to greater difficulty of the operation after previous radiation. Also, the risk of incontinence increases greatly. UCLH will not administer Focal Treatment if they think there might be any cancer outside the Prostate and might require a PSMA and or MRI scan to determine this. (They wouldn't even rely on the Marsden's MRI in my case). Also the patient must be suitable.

I was not not offered any further RT as an alternative option but things have moved on and is now being done. The Marsden do a narrow angle type RT and the tial alternative is as here :- https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-study-looking-further-treatment-prostate-cancer-has-come-back-prostate-after-previous-radiotherapy-ro-pip#undefined

Greater choice makes it more difficult to decide but I always like to consider all that is on offer and discuss with all disipline Consultants before taking the plunge. This is particularly important with Focal Therapy as it's only fully understood by those specialing in the relatively few places that administer it, UCLH being the leading place. All treatments have their failures and successes and those as offered here as salvage treatment don't have a long period of use to know mid to long term outcomes.

Edited by member 10 Jun 2025 at 01:29  | Reason: to highlight link

Barry
User
Posted 10 Jun 2025 at 09:17

I rather suspect that when cancer returns in the prostate after being absent for 10 or more years, it's probably a newly developed cancer, and not that the original one somehow remained dormant for that length of time, not that this makes any difference to treatment options.

I'm pleased to see the RO-PIP trial. I was speaking with one of the leading prostate oncologists a few years ago, and she said we really need to get more brave at trying radiation on the prostate a second time, particularly if it's quite a long time since the original radiotherapy. Some countries had been doing it off-label, so as to speak.

User
Posted 10 Jun 2025 at 11:58

I share Andy's thoughts on this. The original cancer is probably eliminated. You are then left with a man (in my case aged 54) with a prostate and no cancer. However if you have a man with a prostate, we know about 15% of them will develop clinically significant prostate cancer. In my view eliminating the first cancer makes no change to the chances of another one developing. Indeed the fact the person is probably genetically predisposed to cancer makes it quite likely.

The main thing to consider is that it is probably going to be between 10 and 30 years before another cancer develops, and if the original treatment was to a man in his late 60s, something else will kill him before the cancer returns. For anyone originally treated by anything other than prostatectomy aged less than mid 60s we really need to be vigilant of developing prostate cancer (again).

RO-PIP will be interesting.

 

Dave

User
Posted 11 Jun 2025 at 00:37

Originally Posted by: Online Community Member
The original cancer is probably eliminated.

This is a bit of a Catch 22 situation that hasn't been really apparent until well, now!

I have to plead guilty to thinking that if we can get past the 10 year hurdle it's all beer and skittles but the hidden clause is that while the original cancer might be extinct, there's a moderate chance that another one might pop up after an undetermined period.

If you're in the 15% of men who can get prostate cancer once, surely the chances of getting it again are going to be significantly higher. Hard to get stats on though because for people who got their first round in their sixties the chances of them being around for the next take will be reduced by the possibility that they'll die of something else first.

Jules

Edited by member 11 Jun 2025 at 06:30  | Reason: Not specified

User
Posted 11 Jun 2025 at 07:46

Originally Posted by: Online Community Member
I share Andy's thoughts on this. The original cancer is probably eliminated. You are then left with a man (in my case aged 54) with a prostate and no cancer. However if you have a man with a prostate, we know about 15% of them will develop clinically significant prostate cancer. In my view eliminating the first cancer makes no change to the chances of another one developing. Indeed the fact the person is probably genetically predisposed to cancer makes it quite likely.

I mentioned the possibility of it being a new tumour, before Andy (I'm not just a pretty face, beer swiller, you know 🙂). However, Lesley's response suggested that the consultant doubted it was. 

 The chance of another prostate cancer tumour growing after EBRT was one of the reasons I chose surgery.

Having said that in a recent thread I posted:

I was Gleason 9(4+5), PSA 7, T3a (extraprostatic extension) and had my RARP over two years ago. I was lucky and had negative margins. So far my PSA has remained undetectable at <0.02.

However, nomograms:

https://www.mskcc.org/nomograms/prostate

suggest that my chances of remaining BCR free after 5 years are 63%, after 7 years 49% and after 10 years only 37%. This mystifies me. Logically, I'd have thought the longer your PSA remains undetectable the less chance you'd have of BCR?

It seems to me whatever treatment you have, there's still quite a chance, whether it's BCR or a new tumour, that it'll come back and get yer!

Edited by member 11 Jun 2025 at 09:33  | Reason: Typo

User
Posted 12 Jun 2025 at 00:12

Originally Posted by: Online Community Member
I also asked which salvage treatment had the best outcome in terms of efficacy and least collateral damage…..Was told there’s not currently enough data to come to a conclusion.

Lesley, for what it's worth there were some posts on here a little while back by jfd who, as a doctor with personal experience of prostate cancer recurrence after ~10 years was looking at SBRT. He reckoned that he knew of several examples of men being treated with SBRT in Australia but he too was seeking more information. For now, it's as you say, not enough data out there to come to any conclusions. Given the RO-PIP trial is randomised you wouldn't get a choice between SBRT and HDR BT. Anyone know if SBRT is freely available from the NHS in this situation?

I couldn't find the threads started by jfd. They might still exist or they might have been surgically removed because it all got a bit heated.

 

On the broader topic of whether the cancer is new or recurrent, maybe it's just not possible to tell, though ten years seems way beyond the normal lifespan of a prostate cancer cell.

Adrian, those figure look a bit pessimistic. A BMJ article on the  PIP trial works on 13% recurrence within 10 years. Interesting that they're only looking at recruiting 60 people over 2 years for the study and the results won't be in for many years.

 

Jules

Edited by member 12 Jun 2025 at 01:22  | Reason: Not specified

User
Posted 12 Jun 2025 at 09:09

Originally Posted by: Online Community Member
I couldn't find the threads started by jfd. They might still exist or they might have been surgically removed because it all got a bit heated.

Everything connected to jfd has just  f***ing disappeared. 🙂

It's wrong. There was a lot of stuff that was  not related to 'our spat' that got obliterated, including posts that were pertinent to this particular conversation. 

Anyway, mate,  in relation to your "Adrian, those figures look a bit pessimistic. A BMJ article on the PIP trial works on 13% recurrence within 10 years" 

I believe that trial dealt with BCR after RT and not surgery. Even then it appears very optimistic compared to other studies on BCR after whatever primary treatment. I've just been doing some more research into nomograms, but I'll start a new thread on it, rather the hijacking Lesley's. 🙂

 

Edited by member 12 Jun 2025 at 09:34  | Reason: Typo

User
Posted 12 Jun 2025 at 17:42

Good afternoon,

My husband was diagnosed 16 years ago.  Gleason 3+4.  PSA 5 rose to 9 before starting on hormone treatment for three months before receiving 20 sessions of EBRT as part of the CHHiP trial.  PSA remained low< 1 for many years but then started increasing and triggered the 2 threshold.  Referred back to hospital and having had PET scan, cancer has been detected in his prostate (PSA now 5).  He has been offered referral to Mount Vernon Cancer Centre for inclusion in the RO-PIP trial; or Royal Marsden for consideration of salvage radiotherapy on the MR Linac or referral to UCL for consideration of HIFU or cryotherapy.  They have suggested looking at the options on prostate matters website, which we have, with another appointment with consultant in two weeks to make decision. It would be great to hear from anyone who has had these treatments?  Thank you.  Lesley 

 

Edited by moderator 12 Jun 2025 at 18:03  | Reason: Not specified

User
Posted 18 Jul 2025 at 10:09
Hello Lesley (Ladybo2). Sorry to read of your husband's recurrence, particularly as it is of a similar pathway to my own. A small % of men do develop a recurrence in the 10 year post treatment phase. The incidence of recurrence may be either long standing micro mets in pelvic nodes as was the case with me, and/or a new tumour in the prostate which was also the case with me. It is well accepted that a correlation twixt ageing and PCa velocity exists. The older you are the less virulent PCa progression seem's to be and visa versa of course. Give that both your husband and I had EBRT to our prostate all those years ago, neither of us can have further radiation to the prostate (life time dose, in my case it was 72 Gy). I should say that was the accepted wisdom prevailing. Notwithstanding, there are trials currently aimed at radiating small new PCa localised tumours. The precision of the beam/s being the key factor. It will however be several years before, if and when, that practice goes mainstream. In the meantime the focal therapies you mention may indeed be appropriate, effects of libido of course, taken into consideration. So while a PCa recurrence after such a long period of remission is not a welcome friend, it is not our worst enemy either. I suspect your husband will be well looked after and around for many years to come. Even if he were to develop mets at a later stage such as I have, stage 4 metastatic PCa can be well managed for many years with a reasonable quality of life. My best wishes to you Lesley.
User
Posted 18 Jul 2025 at 13:24

As regards life time dose of EBRT, Lesley's husband had 20 fractions under one arm of the CHHiP trial. (I can't remember the precise figure without going through my papers but it was about 3 Gy a fraction or slightly under, so lets say about 60 Gy in total, giving a calculated similar effect to the standard 37 fractions of 2 Gy totalling 74 Gy). So l believe there is potential here for Lesley's husband to have further radiation within his life time dose providing the paths over which the original EBRT were delivered can be avoided.

It was a great disappointment to me when my first HIFU failed to completely vaporise the tumour in my Prostate but the second application seems to have done the job, at least for the time being. The side effects of HIFU are generally mild and it is an easy procedure. The tumour has to be where the HIFU probe can reach otherwise Cryotherapy or Nanoknife (Irreversible Electroporation) are alternative Focal Treatments in the UK. Interestingly, a variant of HIFU called Tulsa Pro is being done on a small scale in some countries. This is where the probe is fed through the Ureter and the tumour is ablated outwards from within the Prostate rather than from outside the Prostate inwards via the Rectum as with standard HIFU. So with Tulsa Pro anywhere in the Prostate can be reached. I don't know whether Tulsa Pro has been used as Salvage Treatment yet and only time will tell whether this or other forms of Focal Treatment such as Focal Laser Ablation (FLA) among other focal options will be better. Only time will tell and it might be horses for courses as with other forms of treatment. A leading UK Focal Specialist says there is a limit to the number of types of focal treatment he can master and he uses what he is most comfortable with.

Edited by member 18 Jul 2025 at 21:45  | Reason: Not specified

Barry
User
Posted 20 Jul 2025 at 01:56

Welcome back jfd. I hope you'll continue to share your experience and medical knowledge, particularly if you choose SBRT.

Sorry about my earlier brusqueness but congratulations on using the word twixt! Excellent word that needs to be used more often.

Jules

User
Posted 21 Jul 2025 at 11:13

To microcolei   Yes Jules my two pelvic met lymph nodes were treated with sbrt. Three months post treatment and my PSA has dropped by 30%. This, despite my tiny localised tumour receiving no treatment whatsoever. My plan is to delay ADT as long as possible. To that end I shall closely monitor psa 3/12, psma pet yearly if psa velocity warrants, and further sbrt if more met nodes show up. 

My reason for undertaking some sbrt research on here previously was because of a scarcity of published papers on the efficacy of sbrt. An abundance of papers has now appeared on Pub Med relating to sbrt trials/treatments outcomes for the period 2016 onwards. Treatment rationales for most centres in Australia are now well in place. 

Following on from my previous experience on here previously, I only responded to Lesley due to her husband being of a similar circumstance, time wise as myself. Likewise I have responded to you, to address your sbrt inquiry. I have no intention whatsoever in re-living the past on here. Have a look on Pub Med Jules.

User
Posted 21 Jul 2025 at 11:28

JFD, I had surgery back in 2014 followed by salvage RT in 2017. I then had SABR which I believe is the same as srbt, in 2022 to a lymph node followed by more SABR to another lymph node the following year. My PSA then accelerated quicker than ever before and another PSMA scan revealed spread to multiple lymph distant lymph nodes.  The dates and figures are all in my profile. I started HT about five months ago.

Thanks Chris 

User
Posted 22 Jul 2025 at 01:31

Reply to colwickchris:  Chris the EBRT salvage rationale following BCR after prostatectomy was wide beam, which was considered the norm at the time. SBRT in Australia has now become the treatment of choice following BCR but the key is early detection with a PSMA Pet Scan. If as you say, you now have distant mets, then the efficacy of SBRT is questionable, and more difficult particularly in relation to adjoining organs/structures. Given that you have already begun ADT, I suspect you may be offered Lutetium 177 in the future when you become castrate resistant. Trials in Australia have shown very encouraging results for Lutetium 177 for 30%, mild improvement for a further 30%, and no change whatsoever for the remaining. Biochemical markers are thought to be the catalyst. The Australian trial results for Lutetium 177 are on youtube. Hope that helps.

User
Posted 22 Jul 2025 at 05:50

Originally Posted by: Online Community Member
Three months post treatment and my PSA has dropped by 30%.

The waiting game is excruciating!

Thanks jfd, both for your reply to me and the information you posted to colwickchris. I'll have a look at the latest from Pub Med. My primary EBRT treatment was given to me here in Port Macquarie, where the team was leading the pack with RT to lymph nodes delivered at a higher Gy rate than had previously been the case and taking advantage of the improved precision of LINACs now in service. So far, so good. The team informs me that they are now using SBRT for recurrence.

All the best for the ongoing success of your treatment. More generally, for those with the cloud of BCR hanging over their heads, improvements in detection of mets by new types of scans would be a huge advance.

Jules

User
Posted 22 Jul 2025 at 11:00

Rely to microcolei:  Hi Jules, nice to see another Aussie on here. I did not realise the advanced rad stuff was available in Port. At the Base Hosp or Genesis? In my day the Mater in Newie was the furtherest northern Rad Tx Centre.

I did have a read of your profile history and I suspect you are on the same trajectory as myself. Your period on ADT of course does tend to muddy the waters somewhat re progression. I think your clinicians baseline for BCR is reasonable at 1 ng/ml. I chose to wait until my psa reached 3 ng/ml but I had 16 years of remission, my doubling time was over 1.5 years, and my cardio vascular co-morbidity in all likelihood  was going to cure my PCa recurrence anyway, and still might.

I suspect you know where you are heading. Aside from the fitness issue a reasonable quality of life still awaits you. I suspect at some point you may be offered Lutetium 177. If so, jump at it. Keep in touch I come on here every now and then.

User
Posted 23 Jul 2025 at 10:08

Port Base hospital jfd. Here's the Pub Med extract:

Prof Shakespeare trial

The trial ended about 6 years ago and the 5 year results are informally in, with good results. 5 years possibly doesn't tell us much when most of the patients were on ADT for 3 years but it's 100% survival, apart from one person who died from something other than prostate cancer.

I think Port has now moved on to a different form of primary RT treatment but while the hospital does great work, it's hard to get any information out of them.

You're on a very slow doubling time, so your evaluation of the  battle between a cardio-vascular and a prostate fate looks realistic. My latest psa test went down, so maybe the .6 was bounce. 

Jules

User
Posted 24 Jul 2025 at 01:04

Reply to microcolei:  Thanks Jules. I had not seen that paper.  Take care.

 

 
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