HIFU Treatment or Cancer Risk

User

Posted 16 Feb 2026 at 16:18

Paul77 reborn!!

Here is my cancer journey summarising previous posts as the site tells me, as I changed my linked email they had to chop up all my posts! Expect they took a HIFU device to them😐.

Thinking About HIFU? Some Questions I Wish I Had Asked First

I agreed to focal HIFU treatment for Gleason 3+4 prostate cancer after being told:

It was well tolerated

Around 85% of men only need one treatment

Failure rates were approximately 10–15%

Further HIFU could be done if needed

Within a year, my cancer had progressed and I required radical treatment. I now live with incontinence and erectile dysfunction, which I am told were significantly worsened by fibrosis caused by the earlier HIFU.

I’m posting this to ask questions I believe every man should ask before agreeing to HIFU.

What is the actual cancer recurrence rate?

If you were told 10–15%, ask:

Does that figure include all grades of recurrence?

Does it include both in-field and out-of-field recurrence?

Does it distinguish between independent (unsponsored) research and manufacturer-sponsored research?

Independent (unsponsored) peer-reviewed studies I’ve sourced:

Bhat et al (2021/22) – General observation: 35–40% failure
https://doi.org/10.1016/j.euf.2021.10.005

Duwe et al (2022/23) – 37.93% at 2 yrs (median). Study terminated due to metastasis risk
https://doi.org/10.1007/s00345-023-04352-9

Thompson et al (2019) – 37.1% at 2.4 yrs
(Editorial commentary interpreted 97% in-field recurrence at salvage)

Thompson et al (2020) – 33.3% at 12 months

Mortezavi et al (2019) – 41% at 6 months

Bass et al (2018) – 42% at 4 yrs

Manufacturer-sponsored / registry-linked studies report I’ve sourced:

Guillaumier et al (2018) – 12% at 5 yrs
(later interpreted as ~31–41% recurrence by Thompson 2020 see above)

Stabile et al (2019) – 15% at 2 yrs; 41% at 5 yrs; 54% at 8 yrs (later interpreted as ~31–41% recurrence by Thompson 2020 see above)

Marconi et al (2019) – 26% at 1 yr; 52% at 2 yrs; 64% at 3 yrs

Cathcart et al (2021) – 17.4% at 12 months

Reddy et al (2022) – 32% at 7 yrs (intermediate risk); 35% at 7 yrs (high risk)

A note on the disparity in failure rates between Guillaumier/Stabile and the Thompson 2020 research:

In the Thompson 2020 Study they discuss local recurrence after partial ablation (HIFU treatment) and state 37-41% experienced cancer recurrence requiring further treatment within 5 years citing large multi-centre series (including Guillaumier 2018 and Stabile 2019).

Crucially, Thompson then breaks down what that 37-41% actually consists of:

- about 12 % needing radical treatment/ADT (identified as Failure Free Survival) plus

- another 25% receiving a second HIFU within 5 years

The favourable stats quoted in Guillaumier/Stabile present inflated efficacy of the HIFU Device, capturing some 25% of cancer biopsy recurrence as HIFU retreatment. Whereas Thompson gives a more accurate picture defining post-HIFU failure as that requiring any further treatment.

Across both independent and sponsored literature, recurrence figures repeatedly cluster around 30–40%, not 10–15%.

If the true retreatment risk is closer to 35–40%, would that influence your decision?

What happens if HIFU fails?

Ask directly:

Will salvage prostatectomy still be nerve-sparing?

Does HIFU cause fibrosis that makes surgery harder?

Are erectile outcomes worse after salvage surgery?

Are continence outcomes worse after salvage surgery?

Bhat et al state:

“The actual effect of focal ablation on the local anatomy is not well studied and cannot be predicted.”

“Any form of FT does have significant collateral damage…”

“Increased fibrosis… less nerve spare… more fibrosis of the pelvic floor muscles preventing good results for potency and continence.”

https://doi.org/10.1016/j.euf.2021.10.005

Was that explained to you before treatment?

Is there evidence that recurrence after HIFU may behave differently?

A 2019 study of salvage surgery reported:

https://doi.org/10.1016/j.eururo.2019.03.007

Men with in-field recurrence had almost four times the risk of biochemical failure after salvage prostatectomy.

The authors hypothesised that incomplete ablation might allow development of “ablation-resistant” clones.

Has your doctor discussed this possibility?

Is this considered standard care?

NICE guidance currently states HIFU should only be offered under special arrangements or within controlled clinical trials:

https://www.nice.org.uk/guidance/ipg756

https://www.nice.org.uk/guidance/ng131/chapter/recommendations#radical-treatment

Were you clearly told you were entering a pathway with acknowledged uncertainties?

Are there commercial or registry interests involved?

The HEAT Registry, used to record HIFU outcomes in the UK, has received manufacturer support by an ‘unrestricted grant’.

The lead clinician in a major HIFU Centre is paid under an agreement with the manufacturer of the Sonablate 500 HIFU Device for ‘Medical Consultancy’.

Were you informed of any commercial relationships or sponsorships by your doctor?

Transparency matters.

Have you been told about your alternatives — clearly?

Under Montgomery v Lanarkshire Health Board [2015] UKSC 11, doctors must explain material risks and reasonable alternatives:

https://www.supremecourt.uk/cases/uksc-2013-0136

Ask yourself:

Were you offered primary prostatectomy or radiotherapy at the same stage?

Were recurrence risks presented in ranges?

Were downstream continence and erectile implications discussed if HIFU failed?

Would a reasonable person consider the difference between 15% and 35–40% failure significant?

I would have.

Why I’m Posting This

When you are told you have Gleason 3+4 cancer, you are vulnerable. A treatment described as “minimally invasive” and “repeatable” is very attractive.

But decisions change when full risk is disclosed.

I respect that some men may have good outcomes with HIFU.

My concern is not to deny anyone access.

My concern is that men make this decision with:

The true recurrence range

Clear explanation of salvage consequences

Transparent disclosure of uncertainties

Once fibrosis has occurred, it cannot be undone.

Please — ask hard questions before you commit.

If others here have had HIFU, I’d genuinely welcome hearing:

What recurrence risk were you quoted?

Were salvage risks explained?

Would you choose differently knowing what you know now?

We all deserve fully informed consent.

I am reposting under a new linked email because I stand by everything I wrote.

Nothing about my experience or the published evidence has changed.

Men deserve access to this information.

Edited by member 19 Feb 2026 at 21:46 | Reason: Not specified

User

Posted 16 Feb 2026 at 16:18

Paul77 reborn!!

Here is my cancer journey summarising previous posts as the site tells me, as I changed my linked email they had to chop up all my posts! Expect they took a HIFU device to them😐.

Thinking About HIFU? Some Questions I Wish I Had Asked First

I agreed to focal HIFU treatment for Gleason 3+4 prostate cancer after being told:

It was well tolerated

Around 85% of men only need one treatment

Failure rates were approximately 10–15%

Further HIFU could be done if needed

I’m posting this to ask questions I believe every man should ask before agreeing to HIFU.

What is the actual cancer recurrence rate?

If you were told 10–15%, ask:

Does that figure include all grades of recurrence?

Does it include both in-field and out-of-field recurrence?

Does it distinguish between independent (unsponsored) research and manufacturer-sponsored research?

Independent (unsponsored) peer-reviewed studies I’ve sourced:

Bhat et al (2021/22) – General observation: 35–40% failure
https://doi.org/10.1016/j.euf.2021.10.005

Duwe et al (2022/23) – 37.93% at 2 yrs (median). Study terminated due to metastasis risk
https://doi.org/10.1007/s00345-023-04352-9

Thompson et al (2019) – 37.1% at 2.4 yrs
(Editorial commentary interpreted 97% in-field recurrence at salvage)

Thompson et al (2020) – 33.3% at 12 months

Mortezavi et al (2019) – 41% at 6 months

Bass et al (2018) – 42% at 4 yrs

Manufacturer-sponsored / registry-linked studies report I’ve sourced:

Guillaumier et al (2018) – 12% at 5 yrs
(later interpreted as ~31–41% recurrence by Thompson 2020 see above)

Stabile et al (2019) – 15% at 2 yrs; 41% at 5 yrs; 54% at 8 yrs (later interpreted as ~31–41% recurrence by Thompson 2020 see above)

Marconi et al (2019) – 26% at 1 yr; 52% at 2 yrs; 64% at 3 yrs

Cathcart et al (2021) – 17.4% at 12 months

Reddy et al (2022) – 32% at 7 yrs (intermediate risk); 35% at 7 yrs (high risk)

A note on the disparity in failure rates between Guillaumier/Stabile and the Thompson 2020 research:

Crucially, Thompson then breaks down what that 37-41% actually consists of:

- about 12 % needing radical treatment/ADT (identified as Failure Free Survival) plus

- another 25% receiving a second HIFU within 5 years

Across both independent and sponsored literature, recurrence figures repeatedly cluster around 30–40%, not 10–15%.

If the true retreatment risk is closer to 35–40%, would that influence your decision?

What happens if HIFU fails?

Ask directly:

Will salvage prostatectomy still be nerve-sparing?

Does HIFU cause fibrosis that makes surgery harder?

Are erectile outcomes worse after salvage surgery?

Are continence outcomes worse after salvage surgery?

Bhat et al state:

“The actual effect of focal ablation on the local anatomy is not well studied and cannot be predicted.”

“Any form of FT does have significant collateral damage…”

“Increased fibrosis… less nerve spare… more fibrosis of the pelvic floor muscles preventing good results for potency and continence.”

https://doi.org/10.1016/j.euf.2021.10.005

Was that explained to you before treatment?

Is there evidence that recurrence after HIFU may behave differently?

A 2019 study of salvage surgery reported:

https://doi.org/10.1016/j.eururo.2019.03.007

Men with in-field recurrence had almost four times the risk of biochemical failure after salvage prostatectomy.

The authors hypothesised that incomplete ablation might allow development of “ablation-resistant” clones.

Has your doctor discussed this possibility?

Is this considered standard care?

NICE guidance currently states HIFU should only be offered under special arrangements or within controlled clinical trials:

https://www.nice.org.uk/guidance/ipg756

https://www.nice.org.uk/guidance/ng131/chapter/recommendations#radical-treatment

Were you clearly told you were entering a pathway with acknowledged uncertainties?

Are there commercial or registry interests involved?

The HEAT Registry, used to record HIFU outcomes in the UK, has received manufacturer support by an ‘unrestricted grant’.

The lead clinician in a major HIFU Centre is paid under an agreement with the manufacturer of the Sonablate 500 HIFU Device for ‘Medical Consultancy’.

Were you informed of any commercial relationships or sponsorships by your doctor?

Transparency matters.

Have you been told about your alternatives — clearly?

Under Montgomery v Lanarkshire Health Board [2015] UKSC 11, doctors must explain material risks and reasonable alternatives:

https://www.supremecourt.uk/cases/uksc-2013-0136

Ask yourself:

Were you offered primary prostatectomy or radiotherapy at the same stage?

Were recurrence risks presented in ranges?

Were downstream continence and erectile implications discussed if HIFU failed?

Would a reasonable person consider the difference between 15% and 35–40% failure significant?

I would have.

Why I’m Posting This

When you are told you have Gleason 3+4 cancer, you are vulnerable. A treatment described as “minimally invasive” and “repeatable” is very attractive.

But decisions change when full risk is disclosed.

I respect that some men may have good outcomes with HIFU.

My concern is not to deny anyone access.

My concern is that men make this decision with:

The true recurrence range

Clear explanation of salvage consequences

Transparent disclosure of uncertainties

Once fibrosis has occurred, it cannot be undone.

Please — ask hard questions before you commit.

If others here have had HIFU, I’d genuinely welcome hearing:

What recurrence risk were you quoted?

Were salvage risks explained?

Would you choose differently knowing what you know now?

We all deserve fully informed consent.

I am reposting under a new linked email because I stand by everything I wrote.

Nothing about my experience or the published evidence has changed.

Men deserve access to this information.

Edited by member 19 Feb 2026 at 21:46 | Reason: Not specified

User

Posted 20 Feb 2026 at 00:22

Paul has reason to decry HIFU because he was one of the few unfortunates where HIFU was unsuccessful and also made it more difficult to have other radical rectificational treatment thereafter. (As regards the latter, the same can be said for Prostatectomy after RT, which many surgeons will not attempt).

In fact all men diagnosed with PCa and recommended radical treatment should research all options open to them because they all have pros and cons which includes failures. Some men will not be suitable for certain treatments or may be particularly more suited to one or more other options.

As regards Focal Treatments, (HIFU is approved by NICE with the caveat that all cases are fully recorded). The intention is to treat only tumours that are considered significant rather than all the cancer as with Prostatectomy or Radiation. So there remains the possibiliy of a need for a further application of HIFU or another treatment in due course. This is the 'trade off' for a generally quick and milder treatment with less severe after-effects than RT or RP, where both have their failures anyway. I am not recommending any establishment but suggest a look around this site which gives more information and shows how HIFU compares well with RT and RP. https://www.thefocaltherapyclinic.co.uk/focal-therapy/success-and-clinical-evidence/

Edited by member 20 Feb 2026 at 00:27 | Reason: to highlight link

Barry

Show Most Thanked Posts

User

Posted 19 Feb 2026 at 20:51

This is a great document Paul77

There were few places to undertake HIFU when I started my journey and all in the private category miles away from home so personally felt if I was going to pay up then I would expect at least as good as Radiotherapy... My brief foray didn't result in good vibes so went down the radical route with all that that entails.

Not been on the site for several months so it was good to find your posting - hopefully others will easily find it and benefit and bring clarity in what to ask with their consultants...

The more information the better when it comes to such a difficult decision, I know I struggled.

Andrew

User

Posted 19 Feb 2026 at 21:55

Hi Andrew

good to hear from you again. I was pretty annoyed all my posts (and maybe the entire posts and replies) were deleted without prior warning, when all I wished to do was to step aside and leave the posts for others to read as I had really said all there was to say. Naturally I take full backups and offered these to the site to restore. They said it was irreversible.
hmmmmm

With a little help from ChatHPT working over my extensive posts, and a morning spent preparing this ‘neutral’ factual summary, I hope it can be of some help. It seems some very powerful forces are supporting HIFU treatment, so I don’t mind being an advocate of truth about this treatment, having lost my prostate and suffered the toxic life changing effects of post HIFU prostatectomy at Guys at my expense as the London NHS Cancer centre refused a nerve-spare procedure under NHS

Edited by member 19 Feb 2026 at 21:59 | Reason: Not specified

User

Posted 20 Feb 2026 at 00:22

Edited by member 20 Feb 2026 at 00:27 | Reason: to highlight link

Barry

User

Posted 20 Feb 2026 at 01:03

Hi Barry

Nice to hear from you. Of course good luck to all men choosing focal therapy HIFU.

you don’t seem to worry about the obvious manipulation of results between Gaullaumier (whose Thesis gained FDA approval for the device based upon a trial Registry - now the HEAT Registry) and Thompson 2020. Bending cancer recurrence % by absorbing 25% recurrence into repeat HIFU is dodgy.

Do you support such tactics?

I do not.

User

Posted 20 Feb 2026 at 19:59

It is understood that men may need a second application of HIFU. The analogy has been given with breast cancer. At one time they used to remove all of a woman's breast if cancer was found and indeed in severe cases this may still be done. However, it is often the case now that only small tumours are removed but further lumps may need to be removed in due course. The same can be said of kidney tumours. Here the point is made by a top urologist. https://www.youtube.com/watch?v=LegHz_XvZas

Success has to be looked at differently. It may mean more than one treatment application to defeat cancer by minimal intervention to have less severe after effects and to preserve function, although considered in a more conventional way, HIFU still compares quite favourably with other forms of treatment.

I feel sure that had you suffered a problematic Prostatectomy rather than HIFU, you would have made a strong case about all its shortcomings, need for subsequent RT or Focal salvage treatment, theories that hospitals were pushing Robotic surgery because they were hand in glove with manufacturers of robots, playing down problems and severe side effects that undoubtedly occur with Prostatectomy. You could do the same for RT, playing down problems and the damage and injury it has done and may do. Highlight the damage where women were so badly injured by RT that they formed a group called R.A.GE., although RT has improved greatly over recent years it can still initiate other cancers long-term and can have some severe after effects.

Edited by member 20 Feb 2026 at 21:41 | Reason: to highlight link

Barry

User

Posted 20 Feb 2026 at 20:34

I’m not quite as anti-HIFU as some people. But I do regret having chosen it.

For a few weeks it gave me a serious and painful problem of urine retention, due to expansion/inflammation of the prostate from all that energy poured into it. But I was assured that the post-op MRIs showed ‘no residual disease’.

I was puzzled that post-op blood tests showed no reduction in PSA. I was told, let’s see what the next test says in a few months’ time. After 2 or 3 subsequent blood tests still failed to show any PSA reduction, I was finally given a PSMA PET scan. Exactly 14 months after the HIFU, I was told that the scan showed spread to pelvic lymph nodes.
At that point I was promptly transferred from focal to onco and put on HT, prior to RT a few months later. The RT succeeded in reducing my PSA to 0.01 or less, helped presumably by the hormone treatments which I’m still on for another year or so.
If, worst case, the success of my RT/HT turns out to be temporary, I’ll never know whether it would have given a permanent cure, had it been done at least a year sooner - which it would have been, had I opted for it in the first place.

My advice to anyone contemplating HIFU would be to ask those offering it, “By how much will my PSA reduce after HIFU? And what happens if it doesn’t - how soon will you refer me to Onco? “

User

Posted 22 Feb 2026 at 06:17

Hopeful Oldie,

Sometimes, relatively few cancer cells can escape and not be seen on scans. As I was told,, you would not have been offered HIFU had MRI shown cancer outside your Prostate. Had you had a Prostatectomy, nearby Lymph nodes may have been have been removed as a precaution, but where do you stop if nothing is seen? A similar situation arises with RT. You mention Pelvic Lymph Nodes being affected but not your Prostate, so it seems that your HIFU worked as intended. Your subsequently being diagnosed with spread outside the Prostate,means that a similar situation would in all probability have been the case had you had RT from the outset, unless it was extended to where it was not seen on scans, just in case. Following ypur PSMA scan, RT was able to be given to the Pelvic Nodes, seen affected. I sincerely hope this will kill all of your cancer. However, you should be aware that some cancer cells may have spread to other areas and not yet have been seen on your PSMA scan.

As regards your last paragraph, you could ask your consultant the same question after any treatment but you cannot be given a definitive answer. There are different types of Prostate Cancer and it can behave very differently. A leading consultant has said he has had a number of men through his clinic who have zero PSA but are riddled with cancer and "don't live and die by PSA""Maybe not a great way of expressing it but it makes the point. Ignore the introductory remarks; it's a very good talk: https://www.youtube.com/watch?v=60P98QLWf70

(This PSMA scan has largely superceeded the C11 Cohlin scan, at least in Europe)

Edited by member 27 Mar 2026 at 17:56 | Reason: to highlight link

Barry

User

Posted 23 Feb 2026 at 10:48

Barry

Your points are fair within a theoretical context.

Respectfully, what you and a large part of the senior medical establishment and most of our wide eyed politicians of any party continue to miss is the total lack of transparency concerning actual payments made by medical device manufacturers to top consultants. The consultants are only required to state in research papers that they have received payments eg: for ‘medical consultancy’. This is justified by the medical research establishment as a positive - public private partnerships fostering improved research because of engagement with industry. In Declarations of Interest held by PC Trusts all they do is cite ‘training’ ‘consultancy’ etc without mentioning the sums of money, assuming they bother to make any declarations. Many do not.

The question I ask is this. How does anyone know where the limits lie? Where a reasonable remuneration for services provided to Device manufacturers is proportionate to services provided?

The fact that ANY private agreements exist between top consultants which are beyond scrutiny under Freedom of Information is an obvious Red Flag to me. What is being hidden from public scrutiny?

The way HIFU is shamelessly promoted on dodgy data should give rise for grave concern by Regulators and all the poor suffering blokes scared out of their wits by cancer diagnosis following excessive PSA testing (70% of which requires no treatment at all as 70% of men die with but not of prostate cancer) men who may be ‘easy prey’ for unnecessary and often damaging HIFU treatment sold on the basis of deliberately manipulated research data.

If these payments were exposed the whole medical profession and the long suffering cancer patients on this site would benefit.

The ‘Pounds for Patients’ Report (June 2019) by the CHPI is worthy of immediate action by Government. After 5 years it has not reached the top of any Government 'to-do' list despite the declared interest in cancer care by the current Secretary of State. The Report recommended, amongst other things, a complete overhaul of the system including an absolute prohibition on Conflicts of Interest as in the US. https://www.chpi.org.uk/reports/pounds-for-patients-how-the-private-hospital-sector-uses-financial-incentives-to-win-the-business-of-medical-consultants

One thing is clear, at present the NHS is regarded by Medical firms as a ‘soft touch’, ripe for exploitation.

The means of choice for influence being private agreements with top consultants in senior positions.

It is a disgraceful mess

Edited by member 23 Feb 2026 at 11:35 | Reason: Not specified

User

Posted 23 Feb 2026 at 22:54

One important aspect you ignore Paul and that is the NHS is so short of money it lacks funds to cover staff deficiencies, some hospitals that need refurbing/updating or replacing and newer and more cutting edge equipment. I saw a programme on the TV a few days ago comparing cancer facilities and results in Denmark with the Uk. A few years ago they were worse off, now their results are better. They now have 5 times as many scanners per capita than the UK which shows how we lag behind and have long waiting lists. Various UK hospitals appear on TV along with those from third world countries begging for much needed money to survive. Research, precious little money for that. I remember my initial meeting with a very senior Doctor prior to my having my advanced RT treatment in Heidelberg. He asked me why the UK didn't join others for conferences there. I didn't like to say it was probably because we couldn't afford it. On my return to the UK, I put this to my second opinion and he said it was indeed because there was no money for it and unlike delegates from other countries, he would have to pay all his expenses if he could find the time to attend, which he had on occasion.

So in the UK, we are grateful for all those who contribute to and sponsor trials and equipment and provide financial support, be they individuals, bodies, such as Prostate Cancer UK (who incidentally sponsor HIFU investigation), Cancer Research UK and manufacturers of medical equipment and systems. Without all this the NHS would be in an even more parlous state than it is now. Grants for research being hard to come by, I am sure that bodies like Prostate Cancer UK and others are very careful who they give grants to and how these funds are spent. Not everything works as well as hoped for but it is due to research and trials that equipment and new ways of treating are assessed and implemented. Some of these will be adopted by the NHS, who will benefit in due course. It makes sense that the funds are made available to the few who are best qualified, also that they liaise with manufacturers to make refinements and improvements. Of course, top doctors like top footballers, top musicians, or bankers expect top pay, otherwise you risk losing them to the USA or other better paid countries. I know we are in an age where almost everbody wants to know what everybody else makes but unless you have evidence of malpractice, in which case you should report it; I don't think greater transparency would change much.

As you noted, trials can give varying results, sometimes contradictory and criteria/patient selection can vary but these are made looking backwards, so do not take into account current improvements. Nevertheless, information provided to patients should not be over egged whatever treatment is being considered. As I have said many times, each man should do his research before making a treatment decision. Your purpose seems to be to dissuade men from HIFU, so that means they would more likely defer to other treatment leading to other risks, as many threads on the forum show. I have never recommended one treatment over another because they all have pros and cons. I am not posting further on this thread.

Edited by member 23 Feb 2026 at 23:15 | Reason: Not specified

Barry

User

Posted 23 Feb 2026 at 23:20

I can't help but think there is a misuse of money in some aspects. The whole system can be very clumsy.
Not really PC related, but a close relative has a benign enlarged prostate and needed urgent treatment. He is seeing a Urologist this week, because his relative works in admin in the hospital. If this goes on all the time, on any level, it's not quite right.
Also he may need aquablation, which although recommended by Nice, isn't available in many places yet. However, it doesn't involve overnight stays and has fewer ED issues and incontinence, unlike TURP. therefore requiring fewer appointments and treatment for those conditions, not to mention the improved QOL.
This seems a false economy to me.

User

Posted 24 Feb 2026 at 11:13

Hi Barry

The HIFU issue will in time come out of the shadows. Yes I object to mendacity from doctors who are trained on the public purse. If men carrying a cancer diagnosis opt for other radical treatment and are well and truthfully advised by good doctors of material risks to morbidity that is their good and true choice as patients. Equally, they need to be advised of the no treatment option. The problem is, the current push for mass PSA testing is hooking men into a doom loop of fear of death by cancer and laying out a fake landscape for many many men to be picked off by a treatment sold off bad data.
I have suffered the consequences of this mendacity in loss of continence and potency never mind having to pay privately £22k for a (successful) nerve spare procedure at Guys.
I’m not trying to dissuade men from HIFU. But shining a light on the true facts can I hope help men with a cancer diagnosis to a) put that in context (it may very dangerous but in the majority of cases, 70% of men diagnosed will not die of it but with it) and b) know what questions to ask their doctor.

My very best wishes to all men living with prostate cancer. My own treatment journey has taught me more than ever to cherish life and love day by day.

User

Posted 18 Mar 2026 at 19:21

members on here may be interested in a 3-part Radio 4 programme, 'Money Influence and the NHS' looking into Conflicts of Interest. The first part aired today at 15.30: https://www.bbc.co.uk/programmes/m002t1j0

While writing, you may recall all my posts were deleted apparaently in error as all I asked the site to do was cancel my email etc. Never mind, I copied the lot just in case!

Here is a post I made on 14th December at 13.05 not covered in my summary above but worth a reminder so I have cut and pasted it here:

"Its been a while. I noticed a recent video posted by an 'expert' in prostate cancer recorded that the outlook for a prostate cancer patient who has had HIFU treatment and then needs radical treatment following recurrence is 'really very very good'. As someone who was misled about the cancer recurrence rates following HIFU treatment Id like to point out that in an FOI Request in 2024 to a major London Hospital the reply recorded that the Hospital has found prostatectomy (removal of the prostate) while sparing the nerves which facilitate male erections is less successful following HIFU in the primary setting (removal of the prostate without prior HIFU) than in the salvage setting (after HIFU treatment). This is because HIFU 'fries' part of the prostate welding the delicate gossamer of nerves surrounding the prostate to the prostate wall. This was not mentioned prior to HIFU or in the 'expert' in his video, so I think all men with prostate cancer ought to be informed from prescribing doctors prior to accepting advice to have the treatment."

For the avoidance of doubt I do not have any Conflict of Interest in the sense I am NOT receiving payments from the US HIFU Device Manufacturer, or anyone else. I may however BE conflicted as the treatment which I believe was entirely unnecessary had the correct and honest advice about cancer recurrence rates and downstream consequences for continence and erectile function been given to me in a consultation.

Best wishes to everyone. Maybe things will change soon, if as the BBC programme suggests, the UK follows the US to create a 'Sunshine Act' of Parliament forcing Doctors (who after all are trained on the public purse) to make full financial disclosure. Only that will eradicate this poison at the heart of our National Health Service.

User

Posted 20 Mar 2026 at 10:58

regarding the FOI referred contradicted in the 'ask an expert about prostate cancer video' to see this link: https://www.uclh.nhs.uk/application/files/4517/1888/1828/Ref_no_FOI.2024.0092_Response.pdf

Edited by member 20 Mar 2026 at 11:08 | Reason: correction on link

User

Posted 27 Mar 2026 at 12:17

Important: Please consider writing to your MP

Over the past two years, I’ve been looking closely at High Intensity Focused Ultrasound (HIFU) and the information patients are given before choosing it. What I’ve found is concerning.

There appears to be a significant gap between reported outcomes:

- Some studies (linked to clinicians involved with device manufacturers) report relatively low recurrence rates

- Independent studies report recurrence rates in the region of 32–40%+

That’s a very large difference, and it raises an obvious question: Are patients being given a fully balanced picture before making decisions?

Wider regulatory concerns

This isn’t just about one treatment. The Cumberlege Review in 2020 found serious systemic issues, including:

- clinicians with financial interests involved in advisory roles

- weak oversight and poor disclosure of conflicts

https://www.immdsreview.org.uk/downloads/IMMDSReview_Web.pdf

A related article in the The BMJ highlights that Conflicts of Interest are still ongoing, with conflicts often poorly declared and rarely enforced.

https://blogs.bmj.com/bmj/2020/07/21/david-rowland-some-financial-conflicts-of-interest-in-medicine-cannot-be-managed-and-should-be-prohibited/

Patient information concerns

In this thread I have highlighted serious concerns about how risks are communicated:

- An “Ask the Expert” online video about Prostate Cancer presents reassuring outcomes

- These are contradicted by published NHS data released under Freedom of Information which record worse functional outcomes for erectile function in the salvage treatment setting.

This matters because under Montgomery v Lanarkshire Health Board, patients must be given clear and balanced information to make informed decisions. If cancer recurrence rates are higher than some patients are led to believe, then:

- treatment decisions may be based on incomplete information

- men may face more life-changing salvage treatments later

- avoidable harm could occur

This is ultimately a patient safety issue, not just a clinical debate.

The yawning gap in UK regulation

The US addressed concerns over financial Conflicts of Interest as long ago as 2010 under the Physician Payments Sunshine Act (2010) requiring full disclosure of payments to clinicians.

The UK currently lacks:

- a comprehensive, enforceable disclosure system

- clear limits on conflicted individuals in advisory roles

What I’ve done (and what you can do)

I’ve written to my MP asking them to raise this with the Health Secretary, specifically requesting:

1 stronger rules on conflicts of interest

2 independent oversight of patient information

3 potential parliamentary scrutiny or inquiry

4 consideration of a UK equivalent to the Sunshine Act

If you think this matters, please consider writing to your own MP as well.

If enough people join me in this endeavour, things will change. MPs do respond when multiple constituents raise the same issue. This isn’t about criticising individual doctors — it’s about making sure all of us patients are given clear, balanced, and transparent information when making life-changing decisions.

Men with a diagnosis of Prostate Cancer deserve to be informed honestly of the poor odds of cancer recurrence following HIFU and told the truth about life-changing damage to erectile function and continence which they may suffer following failure.

At a time when public trust in healthcare is under pressure, any perception that treatment decisions may be influenced by financial interests risks undermining patient confidence in clinical advice more broadly.

I wish everyone reading this the best outcome in their cancer journey for them and their loved ones.

Edited by member 27 Mar 2026 at 12:23 | Reason: Not specified

User

Posted 29 Mar 2026 at 08:55

I just want to provide some counterpoints to the very negative statements about HIFU (and by extension other forms of focal therapy) in this thread.

Most importantly, as a scientist, I wanted to comment on the argument made above that HIFU leads to worse cancer recurrence rates than people are told. It is vital that you read the literature carefully, as HIFU has been used in a number of different ways:

(i) As a focal therapy for patients with localised cancer

(ii) As a whole gland therapy for patients with more advanced cancer

(iii) As salvage therapy for those who have had other treatments but have recurrent cancer

The outcomes in each of those are very different, and broadly, the NHS only recommends HIFU should be used in (i), with low grade, early stage, localised cancers. If this protocol is followed then outcomes are exactly as stated by the clinicians. However, many papers in the scientific literature discuss examples of HIFU use in the other settings, where outcomes are worse.

You cannot simply roll all HIFU papers together and assume they are all reporting the same thing. It is vital when looking at published outcomes that you only look at papers where the enrollment criteria are THE SAME as those currently recommended by NICE. Indeed, part of the reason HIFU is limited to low-grade, early-stage, single-focus is because of the papers showing worse outcomes when used on more advanced tumours.

It is therefore very misleading to lump together all of the historic literature to try and come to broad brush conclusions about a technique that has been used in very different ways.

That said, HIFU (and other focal therapies) are obviously not as established as radical prostatectomy (RP) or radiotherapy. If you want greater certainty of outcome, then selecting those modalities is probably better. However, many men have RP and still get recurrent cancer (20-40% get biochemical recurrence within 10 years). Focal therapies do offer much lower risk of side effects and actually, if used on low-grade, early-stage, single-focus tumours, the recurrence rates at 5 years are similar to those after RP.

I acknowledge that some men will have bad experiences with any therapy, and have every right to be heard. But it is also important to present scientific evidence fairly and not to push an agenda.

As for HIFU making radical prostatectomy slightly more difficult as a result of scarring, potentially impacting to a small extent on impotence (but not incontinence) all patients undergoing HIFU are now informed about this. However, surgery is still much easier than after radiotherapy (where it is considered essentially impossible). Previously patients may not have been informed about this, but that was because HIFU was new, and few men would have gone through salvage treatment after HIFU. However, all of those patients were informed that it was a new technique, which has associated risks, and that longer term outcomes were less certain.

[I should note that I recently had Nanoknife treatment of prostate cancer on the NHS, and for me, with the type of cancer I have, and the lifestyle I want to live, this was, in my opinion the right option. Nanoknife is milder than HIFU and works on anterior tumours which HIFU does not. I was informed the treatment was only just past experimental stage and that longer term outcomes were therefore less well-known. I was informed that RP would still be an option should the cancer return, and that evidence currently shows that for Nanoknife this is not significantly more difficult that standard RP, but that it was not without risk.]

Finally, on conflicts of interest, these exist in many areas of experimental medicine. There is certainly a need to manage them robustly. All published work has to clearly declare them, and all papers are reviewed with this information in mind. All clinical trials have to be registered in advance and it is not allowed to cherry-pick the best data. One of the reasons that those closest to the technology have the best outcomes is that they tend to apply the best experimental technique, as they are the most experience, and also select patients the most carefully, as they have the most data about those who benefit the most. This is not a conflict of interest - this is simply how best practice evolves in terms of using a new technique in the clinic. For example, those who get the best results in robot-assisted radical prostatectomy are those who have used the robots the most (all men are advised to ask how many RPs a surgeon has performed). Most of these high-users of robot-assisted RP are those who have worked alongside the companies that make the robots because they were the pioneers of the technique. This is just how medicine works at the cutting edge. So yes there is a need for conflicts of interest to be as robustly managed as possible, and yes there might be some failings, but this is not specific to HIFU or other focal therapies and applies across all areas.

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