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FOCAL THERAPY HIFU

User
Posted 30 Apr 2020 at 17:16

I am considering this treatment as I don't like the risk of incontinence and impotentancy with Prostatectomy and radiotherapy. I would like to hear from anyone who has had HIFU

User
Posted 04 May 2020 at 13:26

Hello, Hoham.

I started on focal therapy 6 years ago, because, like you, I didn't fancy a radical.

I had cryotherapy, then HIFU later, both on the NHS in London.

I recently had to have a radical, since my cancer returned.

You can read all about my journey to date here:

http://andrewhamm.co.uk/prostate/blogdetails.htm

______Grateful for the goodness of God________

User
Posted 30 May 2020 at 08:23

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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User
Posted 30 Apr 2020 at 23:22
HIFU is quite hard to get in the UK because it doesn't have very good results as a primary treatment although it is more successful as salvage treatment after another treatment has failed.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 01 May 2020 at 04:49
Yes very largely given as a salvage treatment for failed Radiotherapy or a different focal therapy. I and a few others have had it for this reason but another member who hasn't posted recently did have it as a primary treatment. It is rather a niche treatment which many men don't qualify for due to their gleason/staging/number of significant tumors and position within the prostate. (The cancer has to be within the prostate or still very close to it too).

Can we take it that you have been told that you are a suitable candidate as your diagnosis is not shown under your Bio. Should this be in the affirmative, I will gladly go into detail but this would serve no useful purpose if you are not suitable.

Barry
User
Posted 01 May 2020 at 07:20

Hi Bop,

You seem to have two similar posts. Might I suggest that you consolidate them into one single post, and keep the thread running as your situation changes?

My surgeon had to do a prostatectomy on a failed HIFU case last week, and I asked him what he thought of HIFU.

’Not much,’ he answered ‘but then as a surgeon, I am biased.’

Best of luck.

Cheers, John.

Edited by member 01 May 2020 at 07:24  | Reason: Not specified

User
Posted 01 May 2020 at 12:10

Yes FOCAL THERAPY have told me Iam suitable. 

My PSA 4.5,GLEASON 3+3=6,TNM T2aN0Mx

 

User
Posted 01 May 2020 at 12:39

Originally Posted by: Online Community Member

Hi Bop,

You seem to have two similar posts. Might I suggest that you consolidate them into one single post, and keep the thread running as your situation changes?

My surgeon had to do a prostatectomy on a failed HIFU case last week, and I asked him what he thought of HIFU.

’Not much,’ he answered ‘but then as a surgeon, I am biased.’

Best of luck.

Cheers, John.

Clinicians naturally have faith in and favour their specialties and to get a better idea you need to look at statistics.  Even here results can be skewed because of patient suitability.  One eminent surgeon said where an individual qualified, he thought only surgery was the best answer but Athalays (former prominent member of this forum) highly regarded oncologist said he could achieve with RT anything that could be done by surgery as regards PCa treatment.  Proton Beam which is very expensive and has largely been done in the USA has it's failures but also it's advocates both clinicians and patients.  One of the difficulties in making comparisons of treatments between success and reducing side effects is that these have been considerably improved and refined over recent years including techniques, equipment and appropriate patient selection. Newer treatments such as focal have also improved but it is only by looking back after various numbers of years that a better comparison can be made but by this time further improvements are likely to have taken place.  Then there is the possibility that one form of treatment may be combined with another.  Also, some men may be happy to trade off slightly inferior results for milder side effects, an individual choice.  All current treatments have pros and cons and all those for which a patient is suitable may be considered.  Timing, cost, stage, past results, age, general aversion to a particular treatment, availability, accessibility, any contradictions and being prepared to look for options are some of the aspects that may influence a treatment decision.  

Barry
User
Posted 01 May 2020 at 18:26

Yes FOCAL THERAPY have told me Iam suitable for HIFU. 

PSA 4.5 GLEASON 3+3=6 T2aN0Mx

Thanks 

User
Posted 01 May 2020 at 20:15

OK, I asked because some read about it and don't realize prerequisites to qualify. There is one other hurdle which you may be aware of so I will mention in case not. I think you might find it difficult to get your CCG to fund HIFU within the NHS as primary treatment for PCa. It is not a widely available treatment and where done within the NHS is usual as a salvage treatment within a trial, as it was in my case. So chances are you will have to pay for it. The procedure is done under general anesthesia so a prior assessment of heart, lungs etc is done. The procedure starts with an enema. It is all over very quickly and were it not for the fact that I had a drive home which you are told not to do within 24 hours, I would have driven home the same day.

I will link here to my experience which I hope you will find helpful https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#post133611

With HIFU a Fistula sometimes formed but this is far less common now. This is a very easy treatment with little short term side effects and no long term ones in my case (although it was previous RT that caused ED in my case so I can't comment on that relative to HIFU). There are  other things I will add shortly if I can find them.

Edited by member 01 May 2020 at 23:16  | Reason: Not specified

Barry
User
Posted 01 May 2020 at 20:40

Thank you 

 If I proceed with HIFU I will be self funding it. Iam still hoping to hear from someone who has my cancer profile before I make a decision. However your information is very useful. Thank you 

User
Posted 01 May 2020 at 23:06

Some links I had bookmarked have been taken down but here is one from this charity https://prostatecanceruk.org/about-us/news-and-views/2018/7/hifu

and another from the UK's top Focal Urologist/

https://www.canceractive.com/article/professor-mark-emberton-on-high-intensity-focussed-ultrasound-or-hifu

 

Edited by member 01 May 2020 at 23:07  | Reason: to highlight link

Barry
User
Posted 02 May 2020 at 16:47

Thank you Barry

The article by Mark Emberton is very informative and useful. 

I just noticed your avatar picture, are you Maori? 

User
Posted 03 May 2020 at 04:11
Hi Bop,

If I were G 3+3=6, I would be seriously investigating Active Surveillance, rather than radical procedures at this stage. Did you know, there is a school of thought that G 3+3=6 should not even be classified as ‘cancer’ at all?

And if you had critical illness insurance with the likes of Aviva (née Norwich Union), they would not pay out on the policy as G 3+3=6 is not classed as ‘life threatening’!

Professor E also does NanoKnife, a less invasive surgery. It was trialled by him on the NHS and the success result was inconclusive, but he still offers it privately for around sixteen grand, as does a famous klinik in Heidelberg.

Best of luck.

Cheers, John.

User
Posted 03 May 2020 at 05:32

Thanks I have a video meeting with consultant tomorrow to discuss. 

Unfortunately I do not have insurance. 

Thanks Rob 

User
Posted 03 May 2020 at 05:38

Originally Posted by: Online Community Member

Thank you Barry

The article by Mark Emberton is very informative and useful. 

I just noticed your avatar picture, are you Maori? 

No, but I wouldn't mind changing places with him though!  (cropped pic of display for tourists a few years ago now. I liked NZ)

Barry
User
Posted 03 May 2020 at 17:03

If you could let me have his ID so I can contact him directly that would be great. 

Thanks 

User
Posted 03 May 2020 at 17:33

Have you looked at Andy’(PCUK: andyprostate) page? He’s been through an extensive HIFU journey at UCLH. Worth a chat I’d say.

I looked at all the options before seeing the Prof Whocannotbenamedonhere. Some key points as I was classified as stage 1 Gleason 6 localised cancer. Reading many research papers, although it’s early stage, it became very clear that’s it’s still a cancer even though tends not to break out of the cellular matrix....although there are early studies showing this is possible. Also post RP in 40% of cases after Histology there tends to be an upgrade post biopsy as targeting can miss smaller amounts of higher grade tumour. In my case post op was upgraded to T2c Gleason 7 (3+4). And the 3T mpMRI showed the amount of tumour was small but distributed through all four quadrants plus very close to compromising the prostatic capsule. 

A major concern of any surgery was continence. I can kinda accepted ED might be something I have to live with. On November 27th 2019 I had Retzius Sparing (less disturbing on bladder control nerves) Robotic Assisted Radical Prostectomy with NeuroSafe. 2 nights at London bridge(Guys) under the care of the Prof and his sidekick Da Vinci Xi. Full continence reached week 5 (had minor leaks and dribbles after catheter removed). Life sprang back into the old fella fairly quickly even though one side of nerves removed. Erections good and pretty much same as pre-op. No problems at all with penetrative intercourse so that exceeds expectations. First set of PSA bloods undetectable <0.01...next bloods due by end of month...fingers crossed 🤞🏻 

Good luck with the journey and hope you have a good outcome.

Edited by member 04 May 2020 at 15:46  | Reason: Not specified

User
Posted 03 May 2020 at 19:23
I tried to find a link to Andy's Blog but could'd find it. I followed him long before he joined us here and he did have some interesting videos on his very long and detailed blog. Don't think he has posted on this forum for some time. If you do find his profile, I will be grateful if you would post a link so I can Bookmark it.
Barry
User
Posted 03 May 2020 at 23:04

Hi Barry, and any one interested in hifu

The links you were looking for. 

https://community.prostatecanceruk.org/default.aspx?g=profile&u=43080

http://andrewhamm.co.uk/prostate/blogdetails.htm

Dave

Dave

User
Posted 04 May 2020 at 11:45
Thank you for the link Dave. Although some of the presentations and videos are now largely a few years old there is a lot of very interesting information not only about HIFU but other aspects that is still applicable and for men interested in PCa . Many thanks to Andrew for making this and his very detailed histology available.
Barry
User
Posted 04 May 2020 at 13:26

Hello, Hoham.

I started on focal therapy 6 years ago, because, like you, I didn't fancy a radical.

I had cryotherapy, then HIFU later, both on the NHS in London.

I recently had to have a radical, since my cancer returned.

You can read all about my journey to date here:

http://andrewhamm.co.uk/prostate/blogdetails.htm

______Grateful for the goodness of God________

User
Posted 04 May 2020 at 14:54

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 15:45
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 17:10

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 20:55

Hi, chaps.

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

 

______Grateful for the goodness of God________

User
Posted 05 May 2020 at 08:00
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 02:19

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 08:23

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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