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Photodynamic Therapy Experience

User
Posted 05 Nov 2023 at 21:43

Hello Forum

I was on this forum over 5 years ago and found it extremely useful. Unfortunately I am back as prostate cancer has returned. I had Cyberknife treatment in Jan 2018 and have returned low PSA levels until just recently. A recent spike, followed by MRI and biopsy has detected an intermediate grade cancer, Gleason score of 7 (and 4+3).

I have been advised that I need to treat it and 3 options have been presented, surgery, HIFU and Photodynamic Therapy (PDT). Does anybody have any experience of PDT, outcomes, the process, efficacy?

I'd be grateful to learn of any experience,

Pale Rider.

User
Posted 13 Nov 2023 at 23:38

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Hello Forum

I was on this forum over 5 years ago and found it extremely useful. Unfortunately I am back as prostate cancer has returned.

Pale Rider.

Hi Grant, 'New treatments are better than the old, otherwise why would they be bothering introducing them?'

Best of luck mate.

Adrian

Not necessarily the case Adrian.  Where a proposed treatment such as PDT is a new treatment that may prove a  useful alternative or supplement, it is trialled through expanding phases until/if it proves a beneficial and accepted treatment, which is not always found to be the case.  When i was advised to start HT following failed RT and HIFU I contacted the Chief Investigator for the UK PDT trial to participate in it but she said a previous treatment I had had, can't remember if it was the RT or HIFU or even HT, meant I was ineligible for the PDT trial.  However, thankfully, she did agree to do a second HIFU.  It is much too early to know how good an option PDT will be but even if does not compare well with existing treatments, it could still be adopted if it provides an alternative that goes beyond what existing treatment can provide.

Barry
User
Posted 30 Nov 2023 at 02:43
Hi Grant,

I was in a similar position to you having had failed RT. The Royal Marsden who had taken back my case then referred me to UCLH as a possible candidate for HIFU. Before taking the plunge, I asked a pretty senior consultant at UCLH whether I should consider a Prostatectomy instead. His reply was on the lines of yes if I wanted almost 100% chance of urinary incontinence, with the possibility of this being permanent. In view of this I proceeded with HIFU within the FORCAST trial. (Had the tumour been unreachable with HIFU, I would have had Cryotherapy instead).

A resultant fall in PSA following the HIFU showed that some, if not all the tumour had been ablated during the procedure but thereafter PSA began to climb again albeit very slowly. I was subsequently offered HT. I rejected this because I know the drawbacks of HT from having had 8 months back in 2007/8 before and during RT. Furthermore, I wanted HT to be a fall back treatment after all potential other treatment had been tried/ruled out. To cut a long story short, UCLH eventually agreed to do a second HIFU. This time PSA went down to 0.02 and 0.03 and a couple of years on was told no PCa could be seen in a follow up MRI and that I could consider myself in remission. (I know they will not do a further Focal Treatment should a tumour in my Prostate grow, which is always a possibility if there is still a Prostate but will take a view on how to proceed if this should happen).

HIFU does sometimes require a second attempt but I found it very easy, particularly after the catheter was removed after about a week. I had no side effects but already had ED due to previous RT. But I must stress this was my experience and as with other PCa treatments it can vary from one individual to another.

If I correctly recall, a member said there is a surgeon, I believe it was at Guys in London, who specializes in doing Prostatectomy on previously Radiated Prostates with less severe side effects than normally experienced. You might wish to investigate how accurate this is before making your treatment decision.

Barry
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User
Posted 13 Nov 2023 at 19:43

Hello Forum,

 

I have received updates from Clinical Research Nurse and as this is a trial, there needs to be a critical mass before it begins. It is anticipated to start in March 2024.

 

Pale Rider

User
Posted 13 Nov 2023 at 20:17

Originally Posted by: Online Community Member

Hello Forum

I was on this forum over 5 years ago and found it extremely useful. Unfortunately I am back as prostate cancer has returned.

Pale Rider.

Hi Grant,

I'm sorry to hear of your recurrence, its something I'm dreading. I have no idea about PDT,  but my motto is 'New treatments are better than the old, otherwise why would they be bothering introducing them?'

Best of luck mate.

Adrian

Edited by member 13 Nov 2023 at 20:26  | Reason: Not specified

User
Posted 13 Nov 2023 at 23:38

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Hello Forum

I was on this forum over 5 years ago and found it extremely useful. Unfortunately I am back as prostate cancer has returned.

Pale Rider.

Hi Grant, 'New treatments are better than the old, otherwise why would they be bothering introducing them?'

Best of luck mate.

Adrian

Not necessarily the case Adrian.  Where a proposed treatment such as PDT is a new treatment that may prove a  useful alternative or supplement, it is trialled through expanding phases until/if it proves a beneficial and accepted treatment, which is not always found to be the case.  When i was advised to start HT following failed RT and HIFU I contacted the Chief Investigator for the UK PDT trial to participate in it but she said a previous treatment I had had, can't remember if it was the RT or HIFU or even HT, meant I was ineligible for the PDT trial.  However, thankfully, she did agree to do a second HIFU.  It is much too early to know how good an option PDT will be but even if does not compare well with existing treatments, it could still be adopted if it provides an alternative that goes beyond what existing treatment can provide.

Barry
User
Posted 14 Nov 2023 at 07:29

Grant

I noticed from your earlier posts that you have a Cribriform pattern of prostate cancer.  As this tends to want to march forward more, shouldn't your consideration be to take the surgery which at least will give you a 'tried and tested' outcome.  As they've offered you this, presumably your cancer is still contained within the capsule.  Surgery is, of course, more difficult following radiotherapy.

May I ask what your PSA has jumped to?

My husband had Cyberknife just a few months after you as part of the PACE trial and I think you met him at the prostate group meeting at Guy's.

Please let us know your decision.

 

 

 

User
Posted 14 Nov 2023 at 08:44

 

 

Originally Posted by: Online Community Member
  When i was advised to start HT following failed RT and HIFU I contacted the Chief Investigator for the UK PDT trial to participate in it but she said a previous treatment I had had, can't remember if it was the RT or HIFU or even HT, meant I was ineligible for the PDT.

Morning Barry.

As I said I have no idea what PDT is, but if it's a new treatment on trial and I was offered it  I'd give it a go. 

It appears you were willing to do the same, but previous treatment precluded you from doing so?

Of course not all trials are successful but thanks to them  many of the advances in treatment for our particular disease have been remarkable.

 

Edited by member 14 Nov 2023 at 10:42  | Reason: Additional text.

User
Posted 16 Nov 2023 at 21:32

I could have had pdt for skin cancer 14yrs ago.   They use a cream and expose it to certain light.  I believe the prostate one is similar but done via the bloodstream.    For skin cancer it's only used for early cases 'in situ'.

I sometimes regret that I took the doctors word that a graft would be the 'gold standard' and with pdt would almost certainly come back as other doctors have expressed surprise at the graft, although they haven't seen the details.  How effective the prostate treatment is I don't know but perhaps it's only being offered to low risk cases.

WebMD said in May 2022;

'Photodynamic therapy (PDT) is a treatment that uses special drugs activated by light to treat cancer. It's called a "focal therapy" because it focuses on cancer cells while sparing healthy cells. The idea behind PDT is to wipe out as much of the cancer as possible without causing a lot of side effects.

So far, photodynamic therapy is approved to treat some cancers of the skin, esophagus, and lungs. It's also a promising treatment for small, low-risk prostate cancers that aren't likely to spread outside the prostate gland.

Photodynamic therapy has a few advantages over current treatments for early-stage prostate cancer. Some men don't want to wait through active surveillance, which closely monitors but doesn't treat the cancer. Others worry about the sexual and urinary side effects that surgery and radiation can cause.

PTD might one day be an alternative to these treatments. But for now, it's still considered experimental.'

User
Posted 17 Nov 2023 at 01:56

The Phase 1 trial of PDT still seems to be recruiting. Details as link https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-a-new-way-of-giving-photodynamic-therapy-for-prostate-cancer-spectracure-p18#undefined

 

Edited by member 17 Nov 2023 at 12:09  | Reason: to highlight link

Barry
User
Posted 24 Nov 2023 at 16:34

Hi Vicky,

‘Why not have surgery’ is a good question to ask. I was offered surgery prior to the Cyberknife treatment, the consequences and possible attendant side-effects did concern me. I was living alone at the time (still am), decided I didn’t want to undergo recovery alone. I was also concerned about ED, incontinence and supporting myself whilst off work. Today the same set of circumstances apply, I know that surgery after RT is even more difficult and it’s possible if the PDT doesn’t work I am uncertain as to what salvage treatment is possible next. The cancer is contained within the prostate and though it is more rapidly growing than previous, consultants are not suggesting I need urgent treatment. My next phone consultation is next week, so I expect to learn more about whether they have the critical mass for the trial to go ahead as planned in March.

The PSA rise after treatment is only significant when compared with previous results. I was initially 10.4 prior to treatment, 12 months after 0.76, 18 months later 0.37, 30 months after 1.28 and most recently 1.83. The marker is the doubling rate.

Grant

 

User
Posted 29 Nov 2023 at 16:11

Hello Forum,

 

I had news yesterday that the PDT trial requires ‘further changes need to be made to the trial. This unfortunately means that we cannot recruit to the trial at present, and also don't have a time frame currently for when this might change’.

This means that I have now to choose from one of three treatments; hormone therapy (which may only just delay the spread of the disease), surgery or HIFU.

I am anxious about surgery, uncertain about HIFU and don’t really see hormone treatment as a viable salvage treatment solution.

It was interesting to hear the oncologist describe me as a young man, that being the case, he thought surgery was the best option.

I’d be grateful for any feedback on anyone who has had salvage treatment after RT involving either surgery or HIFU.

Meanwhile, I’ll continue riding, though not yet on the bike as I broke my pelvis in August after a fall from the bike.

Grant

 
User
Posted 30 Nov 2023 at 02:43
Hi Grant,

I was in a similar position to you having had failed RT. The Royal Marsden who had taken back my case then referred me to UCLH as a possible candidate for HIFU. Before taking the plunge, I asked a pretty senior consultant at UCLH whether I should consider a Prostatectomy instead. His reply was on the lines of yes if I wanted almost 100% chance of urinary incontinence, with the possibility of this being permanent. In view of this I proceeded with HIFU within the FORCAST trial. (Had the tumour been unreachable with HIFU, I would have had Cryotherapy instead).

A resultant fall in PSA following the HIFU showed that some, if not all the tumour had been ablated during the procedure but thereafter PSA began to climb again albeit very slowly. I was subsequently offered HT. I rejected this because I know the drawbacks of HT from having had 8 months back in 2007/8 before and during RT. Furthermore, I wanted HT to be a fall back treatment after all potential other treatment had been tried/ruled out. To cut a long story short, UCLH eventually agreed to do a second HIFU. This time PSA went down to 0.02 and 0.03 and a couple of years on was told no PCa could be seen in a follow up MRI and that I could consider myself in remission. (I know they will not do a further Focal Treatment should a tumour in my Prostate grow, which is always a possibility if there is still a Prostate but will take a view on how to proceed if this should happen).

HIFU does sometimes require a second attempt but I found it very easy, particularly after the catheter was removed after about a week. I had no side effects but already had ED due to previous RT. But I must stress this was my experience and as with other PCa treatments it can vary from one individual to another.

If I correctly recall, a member said there is a surgeon, I believe it was at Guys in London, who specializes in doing Prostatectomy on previously Radiated Prostates with less severe side effects than normally experienced. You might wish to investigate how accurate this is before making your treatment decision.

Barry
 
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