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FOCAL THERAPY HIFU

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User

Posted 04 May 2020 at 13:54

Thanks for information

I will be self funding my HIFU @£16000 initially I thought it would cure me but the more I learn the more I think it may just delay the inevitable RP or RT and ED /incontinence.

Iam waiting for a consultation to discuss my options.

Thanks

User

Posted 04 May 2020 at 14:45

Before you spend sixteen grand it might be worth a £250 private consultation with ‘Professor Whocannotbenamedhere’ to consider your options.

If you search for ‘Santis Prostate’ you will find him.

And I also had an NHS consultation with the top prostate oncologist at the Royal Marsden.

These guys, together with Prof. E are world renowned specialists, so you will be in good hands whatever path you choose.

Best of luck.

Cheers, John.

User

Posted 04 May 2020 at 16:10

Originally Posted by: Online Community Member

.... the more I learn the more I think it may just delay the inevitable RP or RT and ED /incontinence.

I think that is a fair conclusion - some people feel excited at the opportunity to be part of untested or less tested treatments in the hope that they will be trail-blazing and improving outcomes for men in the future but this is rather more selfless than most people feel about their own chance of achieving remission. Perhaps easier to choose a treatment like HIFU if you are confident that you will be able to afford to have it again if it fails the time.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 May 2020 at 19:55

Hi, chaps.

My prostate blog latest URL: http://andrewhamm.co.uk/prostate

______Grateful for the goodness of God________

User

Posted 05 May 2020 at 07:00

I can't recall anyone on this forum having had HIFU who hasn't subsequently required additional treatment. 16 grand is a hell of a lot of money to shell out for treatment that seems to be a "holding action" at best.

Best wishes,

Chris

User

Posted 30 May 2020 at 01:19

My husband has had two focal treatments . A focal FLA in the USA in 2017 and a focal HIFU in Jan 2020

He recovered very quickly from the focal HIFU and has no ED, incontinence and no impact at all on his ability to work and live his life ( Lockdown meant he has not skied this season but his PCa has not caused QOL issues.

No regrets therefore for not going radical as the potential impacts for him could have lead to mental health issues as it does for many men.

The downside is we are completely aware he may still need a removal and have possibly just ‘kicked the can down the road’

PSA test on Monday ( at local GP in Midlands not the normal London option due to WFH)

if the focal HIFU has failed then the ‘kicking the can down the road’ has given time to mentally adjust that removal may well be needed as opposed to rushing into it when the diagnosis was G6 and low risk ( though high volume originally)

A very eminent surgeon was consulted before the focal HIFU and assured he can still remove it even after 2 focal treatments ( the FLA was apparently very neat!)

so if the PSA has not dropped now he has had time to fully recover I guess it will be back for another scam and back to the drawing board!

He is lucky enough to be BUPA covered under their cancer guarantee although the FLA was out of pocket.

Lockdown means the NHS are funding Monday’s PSA test though!

Good Luck with your decision

Clare

User

Posted 30 May 2020 at 07:23

My husband has been treated with Cyberknife radiation as part of the Pace trial at The Royal Marsden (Fulham Road.)

He was initially diagnosed with Gleason 3+4, T2C, PSA around the 4.5 to 5.00 mark.

Cyberknife radiation is carried out over five days and if you are low to intermediate risk will not entail any hormone therapy.

Since the Cyberknife in August 2018 his PSA has gradually decreased and is now at 0.27.

The only side effect he had was bowel urgency which was more of a feeling than an event. This has now abated.

Why don't you ask your doctor to refer you to the Marsden to at least talk about the Pace trials. There is no real urgency with your current grading so it's worth looking at other options.

From the information you've given, I believe that you would qualify for the Pace trial (if you've commenced any hormone therapy in the interim, this would preclude you.)

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