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User
Posted 08 Apr 2019 at 11:04

Hi everyone,

I work for Prostate Cancer UK, in our research communications team. 

Recently, we funded a new clinical trial which aims to test focal therapy (treatments like HIFU and cryotherapy, that aim to treat just the cancer and spare healthy tissue) against standard whole-gland treatments. We're really excited about this new research because we think it has the potential to help make HIFU widely available to men in the UK.

To help make our supporters aware of this new research on focal therapy and HIFU, and of our clinical research in general, we have built several new pages on our website. 

We want to make sure these pages are as useful and easy to understand as possible, so we're looking for volunteers who can navigate the webpages, and then feedback to us by completing a quick online survey (10 minutes). I thought, as this thread is dedicated to HIFU, some of you may be interested in helping me with this. 

You can find the pages and the relevant surveys here: 

  1. Focal therapy webpage, and survey

  2. Clinical trials webpage, and survey

 

Thank you in advance for your help. Please feel free to get in touch if you have any questions. 

 

Ruby 

 

Research communications officer

Prostate Cancer UK

 

N.B - the HIFU trial has not begun to recruit participants yet, but once it does we will add it to our clinical trials pages. 

 

Edited by member 08 Apr 2019 at 17:11  | Reason: Not specified

User
Posted 08 Apr 2019 at 16:53
Hi Ruby,

I think you might have a bigger uptake if you made it clear that you are from PCUK from the start, and made it clearer exactly what you are asking of your respondents. I know nothing of ‘focal therapy’. Is that what they call HIFU?

Cheers, John.

User
Posted 09 Apr 2019 at 14:55
Thank you Ruby

My husband decided on a focal therapy for his tumour and had to travel to the USA for our choice of focal laser ablation.

2 years on we have no regrets re seeking this middle path as his cancer appears under control per her scans and PSA monitoring plus he has had no incontinence and recovered full erectile function . He does now have a dry orgasm but this we were prepared for as the tumour was large.

Great to hear of UKresearch into focal options being funded.

User
Posted 09 Apr 2019 at 18:38

Hi Ruby,

Thankyou for your work.  I had a look and decided HIFU and mpMRI weren't particularly relevant to my case so I didn't read as deeply as I would if it was applicable to myself.  I'm looking more to the future. Relevance would be research into treatment for recurrence or advanced after surgery, if it happens.

If I'm wrong in the above then I'd like to know and if so then perhaps more indication of relevance might be useful.

I looked at the map and thought a list would be good to complement it as the map gives a quick idea of locality and the list would give more indication of scope available overall.

I wondered about saying nothing but thought the above could be more helpful than saying nothing, having not filled in the survey which seemed to ask more than I thought I could fairly answer.

Thanks again. Your work is much appreciated, Peter

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User
Posted 08 Apr 2019 at 16:53
Hi Ruby,

I think you might have a bigger uptake if you made it clear that you are from PCUK from the start, and made it clearer exactly what you are asking of your respondents. I know nothing of ‘focal therapy’. Is that what they call HIFU?

Cheers, John.

User
Posted 08 Apr 2019 at 16:56

Thanks John, that's really helpful feedback. I will amend my post. 

Thanks, 

Ruby 

User
Posted 09 Apr 2019 at 14:55
Thank you Ruby

My husband decided on a focal therapy for his tumour and had to travel to the USA for our choice of focal laser ablation.

2 years on we have no regrets re seeking this middle path as his cancer appears under control per her scans and PSA monitoring plus he has had no incontinence and recovered full erectile function . He does now have a dry orgasm but this we were prepared for as the tumour was large.

Great to hear of UKresearch into focal options being funded.

User
Posted 09 Apr 2019 at 18:38

Hi Ruby,

Thankyou for your work.  I had a look and decided HIFU and mpMRI weren't particularly relevant to my case so I didn't read as deeply as I would if it was applicable to myself.  I'm looking more to the future. Relevance would be research into treatment for recurrence or advanced after surgery, if it happens.

If I'm wrong in the above then I'd like to know and if so then perhaps more indication of relevance might be useful.

I looked at the map and thought a list would be good to complement it as the map gives a quick idea of locality and the list would give more indication of scope available overall.

I wondered about saying nothing but thought the above could be more helpful than saying nothing, having not filled in the survey which seemed to ask more than I thought I could fairly answer.

Thanks again. Your work is much appreciated, Peter

User
Posted 10 Apr 2019 at 12:16

Thank you Peter, that's really helpful feedback. 

I'm glad you're interested in the long-term. We're planning to create some pages on recurrence of prostate cancer and what research we fund in this area soon, so perhaps I can come to you for feedback on those when the time comes. 

I understand if you feel you're not the best person to respond to the survey, but any feedback (including from people who might not anyway have researched focal therapy) would still be really useful for us. 

 

Thanks 😀

Ruby 

 
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