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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

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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

 
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