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PA-RT Trial

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User
Posted 13 Jun 2024 at 14:46

Hey guys,

Where to begin? I was diagnosed last month in May, so this is all very new and scary. My emotions are all over the place. Happy, sad, scared, angry. Each day is different to the last and my emotions seem to change like the "flick of a switch". I'm not ready to tell my family yet. I know this sounds strange, but I will tell them, but only when I'm in control of the finalised treatment plan. I'm currently single. I have 3 very supportive friends who have been amazing and I have been offered all the external professional support which I cannot fault. Since being diagnosed, I've become considerably tired earlier in the day? I think this is due to stress because I'm extremely active and haven't experienced anything like this before. Is this normal, as I haven't had any treatment yet?

I'm 53, fit and healthy and regularly workout. My previous PSA test was prior to Covid and all seemed normal. My next test was this April and it revealed A PSA of 3.3, but with family history of PC, led to an mpMRI which showed a shadow and then a Transperineal Biopsy.

Diagnosis: Prostate Cancer, right anterior prostatic adenocarcinoma, Gleason score 7 (3+4), clinically localised prostate cancer.

I've been offered a place on the PART trial. The trial is comparing PA, (partial ablation - HIFU / NanoKnife) with RT (radical treatment - Surgery, Radiotherapy, Brachytherapy).

Has anyone else been offered the trial and if so, what stage are you at on this journey?

Did you get the randomisation you were hoping for - PA or RT?

Thank you in advance for any support and or advice. What an amazing community this is, albeit, a private members club that no-one wanted to become a member of!

Edited by member 03 Oct 2024 at 22:52  | Reason: Not specified

User
Posted 14 Jun 2024 at 14:08

Lizzo, you cannot tell someone else what treatment to have.

All treatments have downsides.

Amongst those people eligible for HIFU, HIFU probably has the highest recurrence rate of all the options available, but further curative treatments are likely to be available in most cases. You may not want a treatment where the need for further treatment is a higher possibility.

After HIFU, you effectively switch to Active Surveillance, and may still have some smaller tumours being monitored which weren't treated. Not everyone is OK with Active Surveillance, or knowing they still have some cancer in them.

So while it may have fewer side effects, you need to understand the pros and cons of all the treatments you are looking at.

User
Posted 13 Jun 2024 at 14:46

Hey guys,

Where to begin? I was diagnosed last month in May, so this is all very new and scary. My emotions are all over the place. Happy, sad, scared, angry. Each day is different to the last and my emotions seem to change like the "flick of a switch". I'm not ready to tell my family yet. I know this sounds strange, but I will tell them, but only when I'm in control of the finalised treatment plan. I'm currently single. I have 3 very supportive friends who have been amazing and I have been offered all the external professional support which I cannot fault. Since being diagnosed, I've become considerably tired earlier in the day? I think this is due to stress because I'm extremely active and haven't experienced anything like this before. Is this normal, as I haven't had any treatment yet?

I'm 53, fit and healthy and regularly workout. My previous PSA test was prior to Covid and all seemed normal. My next test was this April and it revealed A PSA of 3.3, but with family history of PC, led to an mpMRI which showed a shadow and then a Transperineal Biopsy.

Diagnosis: Prostate Cancer, right anterior prostatic adenocarcinoma, Gleason score 7 (3+4), clinically localised prostate cancer.

I've been offered a place on the PART trial. The trial is comparing PA, (partial ablation - HIFU / NanoKnife) with RT (radical treatment - Surgery, Radiotherapy, Brachytherapy).

Has anyone else been offered the trial and if so, what stage are you at on this journey?

Did you get the randomisation you were hoping for - PA or RT?

Thank you in advance for any support and or advice. What an amazing community this is, albeit, a private members club that no-one wanted to become a member of!

Edited by member 03 Oct 2024 at 22:52  | Reason: Not specified

User
Posted 13 Jun 2024 at 23:44

Hi

Unfortunately not. It's computer randomisation as it's a trial. I am hoping it chooses HIFU once all my data has been entered. Thank you for your reply.

User
Posted 13 Jun 2024 at 23:54

If you are going on a randomised control trial where all the options are available to you off the trial (which looks like the case here), then you have to be happy to take any of the randomised options. If you aren't, then choose the option you want off the trial.

If you are on a trial (even on the control arm receiving standard treatment you would have got off the trial), you will be more closely monitored than someone off the trial.

User
Posted 14 Jun 2024 at 00:32

Originally Posted by: Online Community Member
The trial is comparing PA, (partial ablation - HIFU / NanoKnife) with RT (radical treatment - Surgery, Radiotherapy, Brachytherapy).

It seems like a rather strange trial, setting out to compare [what are set out as] a pair of options that aren't comparable in many ways. In addition, neither of the options are what you'd regard as the sort of treatments that would be offered up to the vast majority of those diagnosed with Prostate cancer. Is this trial actually a comparison between 3 options and not 2, HIFU, Surgery and RT/HT? You can't have brachytherapy after surgery that's removed the prostate.

Logic would suggest that a trial should compare a new treatment with an established treatment, so is it HIFU v the rest?

Jules

 

User
Posted 14 Jun 2024 at 00:59

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-partial-ablation-treatment-for-prostate-cancer-part

Am somewhat surprised that being a phase 3 trial it has not been more reported on that I am aware.

Edited by member 14 Jun 2024 at 01:04  | Reason: to highlight link

Barry
User
Posted 14 Jun 2024 at 06:40

Thanks for the link Barry. That makes the goals of the trial clearer, though I have to wonder why it wouldn't be possible just to compare the results already gathered from thousands of men who've been through HIFU, with those of surgery or various forms of RT.

For the OP this is difficult. When first faced with pc the treatment options can look scary. I [and others here] were in a marginal zone between prostatectomy and RT. If I'd had a choice I would have gone for a prostatectomy. Early on, I was also looking at any alternate treatments to those that were on offer. It's easy for the heart to over-rule the head in this situation and go for what looks like the "neatest" solution but most appealing is not the same as most appropriate.

Andy has outlined one advantage of the trial, that progress is monitored carefully but in your position I'd be rather wary of having my course of treatment chosen randomly. You've had "professional support" but if that's from the one source it could be a good idea to compare and contrast different options.

Jules

User
Posted 14 Jun 2024 at 07:08

Originally Posted by: Online Community Member
I have to wonder why it wouldn't be possible just to compare the results already gathered from thousands of men who've been through HIFU, with those of surgery or various forms of RT.

The reason you can't accurately compare treatment outcomes when the treatment selection wasn't randomised is that patients and/or clinicians will have chosen treatments based on details of their diagnosis, and their perceptions of the relative effectiveness of the options, so you are not comparing like with like. Also, when not part of a trial, the monitoring and followup is often inadequate. You can sometimes get a sense that a treatment does look good, but you can't quantify it when the treatment choice was skewed by preconceptions that likely impact the results.

User
Posted 14 Jun 2024 at 09:31

Originally Posted by: Online Community Member

If you are going on a randomised control trial where all the options are available to you off the trial (which looks like the case here), then you have to be happy to take any of the randomised options. If you aren't, then choose the option you want off the trial.

If you are on a trial (even on the control arm receiving standard treatment you would have got off the trial), you will be more closely monitored than someone off the trial.

 

Given Seb1's age of 52 being in the HIFU group  could offer valuable data 

HIFU has limited data due to it being a new treatment 

HIFU has less side effects than RT 

I know you know all this just pointing it out for others -  esp younger guys more of them seem to be coming forward for pca treatment 

 

User
Posted 14 Jun 2024 at 16:32
If you make an assessment based simply on whether HIFU as an option will be more or less successful than prostatectomy, it will not do as well because Prostatectomy removes the entire Prostate and some lymph nodes if necessary and RT can treat any part of the Prostate and some areas beyond in need. HIFU can't really treat beyond the Prostate and not even all of it because the probe cannot focus on all, or where there is heavy calcification. HIFU also aims to treat only what are thought to be significant tumours and over time some of these could potentially become significant. Tumours could develop where HIFU could not be redirected or be too great for HIFU to deal with. However, side effects with HIFU are generally much milder than with surgery or RT and I suppose it would be useful to know more precisely the relative trade off. The age of patients and other factors must also be considered and careful selection of patients be made for HIFU.
Barry
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User
Posted 13 Jun 2024 at 22:43

 

Do you get to choose which group you will be in on the trial bc at 52 and with your gleason score and psa they should put you in the HIFU group

User
Posted 13 Jun 2024 at 23:44

Hi

Unfortunately not. It's computer randomisation as it's a trial. I am hoping it chooses HIFU once all my data has been entered. Thank you for your reply.

User
Posted 13 Jun 2024 at 23:54

If you are going on a randomised control trial where all the options are available to you off the trial (which looks like the case here), then you have to be happy to take any of the randomised options. If you aren't, then choose the option you want off the trial.

If you are on a trial (even on the control arm receiving standard treatment you would have got off the trial), you will be more closely monitored than someone off the trial.

User
Posted 14 Jun 2024 at 00:32

Originally Posted by: Online Community Member
The trial is comparing PA, (partial ablation - HIFU / NanoKnife) with RT (radical treatment - Surgery, Radiotherapy, Brachytherapy).

It seems like a rather strange trial, setting out to compare [what are set out as] a pair of options that aren't comparable in many ways. In addition, neither of the options are what you'd regard as the sort of treatments that would be offered up to the vast majority of those diagnosed with Prostate cancer. Is this trial actually a comparison between 3 options and not 2, HIFU, Surgery and RT/HT? You can't have brachytherapy after surgery that's removed the prostate.

Logic would suggest that a trial should compare a new treatment with an established treatment, so is it HIFU v the rest?

Jules

 

User
Posted 14 Jun 2024 at 00:59

https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-partial-ablation-treatment-for-prostate-cancer-part

Am somewhat surprised that being a phase 3 trial it has not been more reported on that I am aware.

Edited by member 14 Jun 2024 at 01:04  | Reason: to highlight link

Barry
User
Posted 14 Jun 2024 at 06:40

Thanks for the link Barry. That makes the goals of the trial clearer, though I have to wonder why it wouldn't be possible just to compare the results already gathered from thousands of men who've been through HIFU, with those of surgery or various forms of RT.

For the OP this is difficult. When first faced with pc the treatment options can look scary. I [and others here] were in a marginal zone between prostatectomy and RT. If I'd had a choice I would have gone for a prostatectomy. Early on, I was also looking at any alternate treatments to those that were on offer. It's easy for the heart to over-rule the head in this situation and go for what looks like the "neatest" solution but most appealing is not the same as most appropriate.

Andy has outlined one advantage of the trial, that progress is monitored carefully but in your position I'd be rather wary of having my course of treatment chosen randomly. You've had "professional support" but if that's from the one source it could be a good idea to compare and contrast different options.

Jules

User
Posted 14 Jun 2024 at 07:08

Originally Posted by: Online Community Member
I have to wonder why it wouldn't be possible just to compare the results already gathered from thousands of men who've been through HIFU, with those of surgery or various forms of RT.

The reason you can't accurately compare treatment outcomes when the treatment selection wasn't randomised is that patients and/or clinicians will have chosen treatments based on details of their diagnosis, and their perceptions of the relative effectiveness of the options, so you are not comparing like with like. Also, when not part of a trial, the monitoring and followup is often inadequate. You can sometimes get a sense that a treatment does look good, but you can't quantify it when the treatment choice was skewed by preconceptions that likely impact the results.

User
Posted 14 Jun 2024 at 09:31

Originally Posted by: Online Community Member

If you are going on a randomised control trial where all the options are available to you off the trial (which looks like the case here), then you have to be happy to take any of the randomised options. If you aren't, then choose the option you want off the trial.

If you are on a trial (even on the control arm receiving standard treatment you would have got off the trial), you will be more closely monitored than someone off the trial.

 

Given Seb1's age of 52 being in the HIFU group  could offer valuable data 

HIFU has limited data due to it being a new treatment 

HIFU has less side effects than RT 

I know you know all this just pointing it out for others -  esp younger guys more of them seem to be coming forward for pca treatment 

 

User
Posted 14 Jun 2024 at 14:08

Lizzo, you cannot tell someone else what treatment to have.

All treatments have downsides.

Amongst those people eligible for HIFU, HIFU probably has the highest recurrence rate of all the options available, but further curative treatments are likely to be available in most cases. You may not want a treatment where the need for further treatment is a higher possibility.

After HIFU, you effectively switch to Active Surveillance, and may still have some smaller tumours being monitored which weren't treated. Not everyone is OK with Active Surveillance, or knowing they still have some cancer in them.

So while it may have fewer side effects, you need to understand the pros and cons of all the treatments you are looking at.

User
Posted 14 Jun 2024 at 16:32
If you make an assessment based simply on whether HIFU as an option will be more or less successful than prostatectomy, it will not do as well because Prostatectomy removes the entire Prostate and some lymph nodes if necessary and RT can treat any part of the Prostate and some areas beyond in need. HIFU can't really treat beyond the Prostate and not even all of it because the probe cannot focus on all, or where there is heavy calcification. HIFU also aims to treat only what are thought to be significant tumours and over time some of these could potentially become significant. Tumours could develop where HIFU could not be redirected or be too great for HIFU to deal with. However, side effects with HIFU are generally much milder than with surgery or RT and I suppose it would be useful to know more precisely the relative trade off. The age of patients and other factors must also be considered and careful selection of patients be made for HIFU.
Barry
User
Posted 15 Jun 2024 at 00:07

Originally Posted by: Online Community Member
The reason you can't accurately compare treatment outcomes when the treatment selection wasn't randomised is that patients and/or clinicians will have chosen treatments based on details of their diagnosis, and their perceptions of the relative effectiveness of the options

Thanks Andy. Don't think my brain had been entirely connected on that one! In a way it becomes a test of whether patients/clinicians get it right or not in their decisions. Ethically interesting.

Also of interest, the trial is limited to medium risk G7, psa 20 or less but as Barry's points there are limits to situations in which HIFU can treat all areas of the cancer. Does the "random" selection become "non-random" if it's determined that for some reason HIFU might not be able to treat all of the cancer?

Jules

Edited by member 15 Jun 2024 at 02:41  | Reason: Not specified

User
Posted 01 Aug 2024 at 17:17

Hi Jules.

I'm sorry for only just replying to your comment. On the PART trial, if you are randomised to "Focal Therapy" as opposed to Radical Treatment, depending where the cancer is within the prostate, determines whether you are suitable for HIFU or Nanoknife, (Focal Therapy). As my cancer is "right anterior" I would be suitable for Nanoknife but not HIFU.

Best

Seb

 
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