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HIFU- cancer treatment or cancer risk -Update

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User
Posted 29 Dec 2023 at 08:03
First Posted 04 Sep 2023 at 16:21

Please see previous posts in bio.
 


Update 29 Dec 2023



UPDATE



 

All well so far. Near zero PSA 4 months post op. However, my private surgeon who has done nearly 4000 prostatectomies confirmed the damage of the previous HIFU has done in continence and potency im experiencing. Im still on 4-6 pads a day despite 120 Keegel exercises on the pelvic floor muscles.


HIFU is likely to fail in more than 1 in 3  treatments, causes serious collateral damage to nerves and pelvic floor muscles. But is being sold to patients like me on the basis if 15% failure rate. My own research confirms that failure rate is simply untrue:

“However, the actual effect of focal ablation on the local anatomy is not well studied and cannot be predicted, and therefore could potentially affect surgical outcomes” and, “The aim of FT may be to minimise collateral damage; however, this is often not the finding at the time of S-RARP.Any form of FT does have significant collateral damage, leading to a more radical and invasive S-RARP that is comparable to S-RARP following whole-gland treatment (ablation vs radiation) in terms of the technical challenges faced.Therefore, one needs to be cognizant of the  possibility of increased (HIFU-induced) fibrosis to less NS (nerve spare) and more fibrosis of the pelvic floor muscles preventing good results for potency and continence.”and,
“Poor continence is due to loss of apical support because of fibrosis of the endopelvic fasci, particularly the lateral pelvic fascia, and traction injury to the nerves.  The latter also affects postoperative potency." 
“The failure rate of partial gland ablation ranges between 35% and 42%, with approximately 14% in-field recurrence." 
Bhat et al 2022

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


 

Statistics on the success of HIFU are held in the HEAT Registry set up by the manufacturer of the HIFU equipment. This is not accessible to the general public.  How independent is that data if like me men are being told the failure rate is just 15%?

 

NICE recently upgraded their advice to only allow the treatment under "special arrangements". Which they define as .."there are acknowledged uncertainties about whether a procedure is safe or effective. We also recommend special arrangements if risks of serious harm are known. They say "these will need to be carefully explained to a patient before they make a decision"

NICE revised their guidance April 2023

 

Happiness and health for the new year to all and to your families!

Edited by moderator 29 Dec 2023 at 10:49  | Reason: to comply with House Rules

User
Posted 29 Dec 2023 at 11:34

I sure do see a lot of cases of failed HIFU in support groups considering what a minority treatment it is, but I'm also aware that support groups are not representative of outcomes - those with good outcomes are less likely to hang around in support groups afterwards. I've even had a few guys who do have good HIFU outcomes so far who are annoyed because they weren't told that any salvage treatments required afterwards would likely have poor QoL outcomes, or that the HIFU wasn't aiming to cure all the cancer, only the two largest lesions, and they're back on Active Surveillance for the rest of the cancer.


There does seem to be a big gap between what the focal therapy centres publish as results, and what urologists see as the HIFU outcomes.


It is a general problem with all treatments that patients are not talked through followup options, yet around 30% of all initial treatments fail to cure and need follow-up treatments of some type. How many guys going in to a prostatectomy are told 30% will need more treatment? I think the figure is similar for radiotherapy too. Since salvage treatments almost always have a poorer QoL outcome than if you'd had that as your first/primary treatment, this sort of thing should be discussed, specifically what your specific chance of requiring salvage treatment is (which might be higher or lower than the general 30% figure), and what the follow-up options might be.

Edited by member 29 Dec 2023 at 11:39  | Reason: Not specified

User
Posted 29 Dec 2023 at 11:43

I should add that I feel very lucky that my hospital told me my chance of needing follow-up treatment after prostatectomy was probably >50%. It meant I decided to skip that procedure and go for one more likely to cure me first time, and hence I didn't have to deal with any of the prosatectomy side effects.

User
Posted 04 Jan 2024 at 15:09

Hello Barry


As always I wish you and all men a speedy and sustainable recovery from cancer whichever treatment pathway they selected and thanks again for your detailed reply.


Just to correct, the Study by Bhat (2021) is a US Study not the German Study you refer to which is by Duwe (2023).


Im pleased professor CM who treated you at a London Hospital has the experience of c.900 HIFU operations.  The industrial scale of HIFU treatment at the hospital is not at all surprising to me.  Her boss, professor ME, the Director of Surgery at the unnamed hospital appears to have been engaged in promoting the performance of HIFU equipment on behalf of SonaCare, the manufacturer at International Conferences. I say 'promoting' because use of failure rates of the Sonablate 500 device backed up actual research would not be to 'promote' its use, but simply to give specialist advise from an expert in the field.  In this example in 2017, ME quotes the (as far as I can see) an unsubstantiated 15% failure claim for the device in exactly the same terms used by Hashim Ahmed in the 2014 Seminar Article;


https://www.youtube.com/watch?v=_rX8V6wzfhE&ab_channel=SonablateHIFU


Here again is Ahmeds' 2014 Seminar Article


https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.sciencedirect.com%2Fscience%2Farticle%2Fpii%2FS1078143914002178&data=05%7C01%7C%7C5564629939d4431df98a08dbbaab0c27%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638309016024723199%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=ipoiRWWLEjSuOrFP99IFlVmuJcyQp%2BkDD8CLlOUJ9js%3D&reserved=0


The issue I have is much much wider.  As we said,  Ahmed is Chair of Focal Therapy Uk, in charge of the HEAT Registry which is approved by NICE to record data on the success of the HIFU procedure in the UK. At the same time, he is being paid by "SonaCare Medical/Focused Surgery/Misonix Inc/UKHIFU (manufacturers and distributors of the Sonablate 500 HIFU device) for travel to conferences/meetings and for training surgeons in the use of the Sonablate 500 HIFU device" as well as many other private and public grant sources.  All well and good on the face of it.  As you correctly say, developing and refining cancer treatments should involve public and private interests and expertise working together in the best interests of patient care.  There is nothing wrong here except, I can find no research basis for the claimed 15% failure rate of primary HIFU Ahmed quotes.  In his 2014 he refers to "Current data from more than 3,000 men treated internationally.." as the data source of the assertion, yet the HEAT Registry was only launched on 11th April 2017 by SonaCare with an initial 1500 patients. So he didn't get his data from the HEAT Register.  It may have come from the US and probably from SonaCare themselves who I believe operate a fee-for-use and maintenance of the equipment (I may be wrong). So they would be collecting usage and failure data.  


Coming back to washing machines, if you wanted to sell many many more machines, making over-optimistic claims about their performance would attract millions more customers, boosting profit margins.  I have to say, I find the fact I was advised in exactly the same terms used by Ahmed in 2014,  repeated by professor ME in the above you tube clip in 2017, and written in a letter to my GP in 2021 troubling to say the least.


I don't have the relevant medical training or expertise in statistical analysis to interrogate research studies in any depth. I simply read the results of 9 Studies completed between 2017 and 2023. Here is my quick summary of reported failure rates of primary HIFU, partial ablation:


2017 Garcia et al (Uni Paris-Descartes, Memorial Cancer Centre NY, USE, CEMIC Uni Hosp. Beunas Arries, LapPaz Uni Hosp. Madrid  - Reported primary HIFU failure 28.1% at 6 yrs


2018 Guillaumier et al (UCLH, Imperial + UK Hospitals, Uni Med Centre, Utrecht, Netherlands) - Reported primary HIFU failure 37% at 5 yrs (noted in Editorial comments in 2019 Thompson et al-Table 3)


2019 Marconi et al (UCLH, Guys, Kings, Imperial) Reported primary HIFU failure 26% at 1 yr; 52% at 2yrs, 64% at 3 yrs.


2019 Thompson et al (UCLH with Barts, Q Mary, Uni Oxford) Reported primary HIFU failure 37.1% at 2.4 yrs


2019 Stabile et al (UCLH, Imperial, CharingX, San Raffaele Uni, Milan) Reported primary HIFU failure 15% at 2yr; 41% at 5yrs, 46% at 8 yrs.


2020 Thompson et al (UCLH) Reported primary HIFU failure estimated 35% -40% over 12yrs


2021 Bhat et al (Sunt Med Uni, NY, USA) Reported primary HIFU failure generally estimated 35% -42%


2022 Reddy et al (Imperial, UCLH, UK Hospitals, Utrecht, Netherlands, Cancer Centre in Luzern Switzerland) Reported primary HIFU failure 31% at 7 yrs


2023 Duwe et al (Johannes-Gutenberg Uni with Carl-Gustav-Carus Uni, Germany Reported primary HIFU failure 37.93% at 2 yrs


15% failure rate seems to be more of a sales pitch from this research. All this does not paint a happy picture given that 6,177 primary HIFU procedures were undertaken at the unnamed London Hospital referred to above (my FOI established this data).  


Q1/ Would you take odds of 15% failure with the option of a second HIFU to avoid radical treatment with associated morbidity when your also told the other option is to 'watch' Gleason 4 cancer and see if it grows?  I would and did. But I was not counselled of the collateral damage to nerves and pelvic floor muscles and associated problems this causes later in radical treatment; or given the option of a primary prostatectomy or radiotherapy at that stage- see Q2/


Q2/ Would you take odds of 35-42% failure when its also pointed out incontinence and recovery of erectile function are much worse due to HIFU-induced fibrosis of nerves and muscles if you then need to go onto radical treatment, and if your also given the option of a primary prostatectomy or radiotherapy instead of taking the HIFU gamble? I would not and would definitely have taken the primary prostatectomy route.


So you see the wider picture is, there are serious questions around the care offered by the NHS to prostate cancer patients at this hospital and perhaps other "Centres of Excellence in HIFU" which may mean up to, say 3000 to 5000 men may have taken a treatment pathway they would not otherwise have chosen due to lack of, and/or inaccurate counselling, disabling their informed consent.


We should also consider the many tens of millions of pounds of NHS budget spent on potentially abortive MRI and PET scans, biopsies, consultations and hospital stays; and the extension of cancer treatment for those men with the amplifying effect we know it has on stress for them and their families. That is why I feel strongly about this.


 


 

Edited by member 06 Jan 2024 at 12:53  | Reason: Not specified

User
Posted 16 Jan 2024 at 11:04

Speaking of what they tell you, take a look at a website set up by a group of urologists under the chairmanship of [Doctors name removed by moderator]. The website is committed to promoting the use of HIFU, Focal.Therapy.UK https://www.focaltherapyuk.org/


Under 'About', on the site, it states 'overall recurrence (of cancer) is 5-10% at 5-7 years versus 5-10% for radical therapy'. Now compare that claim to the systematic research review I reported above concluding a cancer recurrence following HIFU in the range 35%-42%.  The discrepancy is due to the fact that the Professor doesn't specify how long after treatment for cancer recurrence was tested, it could be 5 minutes, and he doesn't say what recurrence means. It could be infield (in the treated area), or outfield, or cancer metastasised outside the prostate gland. The claim makes a nonsense of the statement on the site 'we are committed to high quality data collection'. They are not, only to the promotion of the procedure throughout UK hospitals based it appears from this, upon misleading statistics. With no mention at all on this website of the toxic effects of secondary treatments due to HIFU-induced fibrosis I have covered in earlier posts.


All the more concerning as [Doctors name removed by moderator] is the custodian of the HEAT Registry set up by SonaCare the leading manufacturer of the Sonablate 500 HIFU device to record data on the performance of focal treatment in the UK as approved by NICE. 


The Professor's own website states  '20% to 30% of patients over a 6 to 7 year period will require a second HIFU session to be applied to the same area that was treated at the beginning. The exact risk depends on the risk of the cancer at the time of the first treatment.'


https://londonprostate.co.uk/areas-of-interest/hifu-treatment-for-prostate-cancer/


Most men with cancer being non-medical, would take from this you have 20%-30% chance of failure of the primary treatment. And they would read you can always have a second treatment.  By containing his estimate of failure to 'within the area originally treated', the professor ignores outfield recurrence which will push failure rates back up to within the 35%-42% range as the studies Ive looked into above show. 


Turning to the title of my original post "HIFU Treatment or Cancer Risk";  in a 2019 Study (Marconi et al; Robot-assisted Radical Prostatectomy After Focal Therapy: Oncological, Functional Outcomes and Predictors of Recurrence) https://doi.org/10.1016/j.eururo.2019.03.007


the UK's leading prostate cancer researchers conclude: 


'Specifically, we identified that men experiencing an infield recurrence had almost  four times the risk of developing biochemical failure (suggesting cancer spread) after S-RALP (prostatectomy following failure of HIFU), independent of margin status, Gleason grade group, PSA, or pT stage.  This suggests that those experiencing infield recurrence might have a more aggressive cancer phenotype and are thus more likely to need multimodal (more than one type of) therapy with or without systemic (radiotherapy) therapy.  One hypothesis for this finding is that an initial incomplete ablation might result in the development of 'ablation-resistant' clones that repopulate the ablation field and metastasise locoregionally. The biological mechanism of this phenomenon is yet to be described and further research exploring the role of genetic and epigenetic alterations in these tumours is ongoing'


To my knowledge no such research has been published and the hypothesis remains unresolved to this day. Perhaps it is no coincidence that the two leading research centres in prostate cancer, UCL and Oxford University are 'HIFU Centres of Excellence' in partnership with medical equipment suppliers.


Are public private partnerships like 'HIFU Centres of Excellence' leading to improved research and better outcomes for cancer patients? Or are they leading to better outcomes for the manufacturers of medical equipment? The way clinicians like [Doctors name removed by moderator] promote misleading failure rates makes me doubt the former contention.


 

Edited by moderator 16 Feb 2024 at 18:50  | Reason: Not specified

User
Posted 29 Dec 2023 at 12:05

You are indeed lucky Andy. I was not so well informed of actual success rate or toxic secondary treatments or option of a primary prostatectomy which, had I had the correct counselling, i would not have agreed to HIFU. You might find the EU perspective interesting in this systemic review of all research earlier this year. See page 47.


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

User
Posted 30 Dec 2023 at 09:46

Just to say, I think HIFU as a salvage treatment after brachytherapy and in-prostate recurrence does sound a sensible option if it is possible since although recurrence in the target area after radiotherapy isn't that common, it is more likely to be focal where the brachytherapy just missed a bit than an initial diagnosis is likely to be focal. That's certainly something I would look at in this case.

User
Posted 02 Jan 2024 at 07:12

Hi Lyn


of course anyone gaining a glossy view of the procedure should be made aware this is being promoted by a number of UK hospitals following partnerships agreed with the manufacturer of the HIFU equipment: 


https://www.biospace.com/article/releases/-b-sonacare-medical-b-partners-with-university-college-london-to-create-center-of-excellence-for-hifu-surgical-ablation-technology-/?s=63


 


it is troubling to me in their press announcements they fail to mention the toxic effects HIFU has on secondary treatments. These affect recovery of continence and erectile function due to HIFU-induced fibrosis and were well described in a study in 2021 Im sure your aware of: Bhat et al (European Urology Focus 2021 in which he reports: "However, the actual effect of focal ablation on the local anatomy is not well studied and cannot be predicted, and therefore could potentially affect surgical outcomes...The aim of FT may be to minimize collateral damage, however, this is often not the finding at S-RARP. Any form of FT does have significant collateral damage, leading to a more radical and invasive S-RARP (salvage prostatectomy) that is comparable to S-RARP following whole gland treatment (ablation vs radiation) in terms of technical challenges faced. Therefore one needs to be cognizant of the possibility of increased fibrosis leading to less NS(nerve spare) and more fibrosis of the pelvic floor muscles preventing good results for potency and continence. Poor continence is due to loss of apical support because of fibrosis of the endopelvic fascia, and traction injury to the nerves. The latter also affects postoperative potency. The failure rate of partial gland ablation ranges between 35% and 42%"


If I buy a washing machine there are excellent notes on its affect on the environment, troubleshooting fixes etc. etc. Dont men with Prostate Cancer deserve equivalent advice from their clinicians?


I was not told any of this, only that its a very well tolerated procedure with 15% chance of failure with the option of a second treatment, or if your unlucky in an 5% category, you'll need radical therapy, surgery or radiotherapy. Ive was forced to pay privately for a nerve spare prostatectomy £22k. Now im trying to recover continence exercising HIFU- damaged pelvic floor muscles 120 times a day. I thought the NHS was there for us? 


 

Edited by member 02 Jan 2024 at 07:18  | Reason: Not specified

User
Posted 02 Jan 2024 at 17:48
Paul

As I intimated previously and nobody disagreed, you should have been made aware of how HIFU could impact further treatment.

You question the statistics and site the small trial in Germany where only 29 men were treated before discontinuing HIFU, yet on their own omission they only administered one session whereas other studies take two procedures as the protocol for HIFU.comparison. Also, with only 29 men treated, one has to question how good/experienced they were in doing the procedure. The Professor who administered HIFU to me is on record as having done 800 and is said to have now done over 900 procedures, so technique has improved along with better identification of suitable men. Also, you can't consider the results of one small trial not using recognised protocol as definitive for HIFU worldwide. There are often differences in outcomes for various treatments.reported in different trials but I would have thought that the Chair of Focal Therapy would be in a good position to give a general view. You just can't compare washing machine failure rates with PCa treatments, particularly as much will depend on correct patient selection.

As regards UCLH collaborating with the manufacturers of Sonarblate, I think this is usual and to an extent necessary for progress. That way problems can be jointly considered and improvements made. All the expanding number of hospitals who use HIFU must be happy with results to continue to use it on an increasing scale. I stand to be corrected but it is my understanding that even Prostate Cancer UK among others sponsor Focal Treatment research at UCLH.

Again, I am very sorry this has worked out badly for you, particularly as you were not well enough informed and based your treatment decision on what you believe were unrealistic odds.


Barry
User
Posted 08 Jan 2024 at 14:10

My concerns centre upon advice in a Seminar Article from Professor [Doctors name removed by moderator] quoting 'data from more than 3000 men treated Internationally', and a failure rate of just 15% for HIFU partial ablation, widely contradicted in every study I have read.


As I have said the failure rate quoted by [Doctors name removed by moderator] and repeated in the exact terms by [Doctors name removed by moderator] in a promotional video made by the manufacturer of the HIFU equipment, SonaCare in 2017, was also included in verbal advice to me confirmed in a letter to my GP from [Doctors name removed by moderator] in late 2021.  So the credibility of the source must be extremely high for the Director of Surgery in a major London Hospital to be issuing the advice to potentially 6,177 men with prostate cancer over the last five years?


I have now checked the quoted data source referred by [Doctors name removed by moderator] which is a systematic review of current research dated May 2013 entitled; 'The Role of Focal Therapy in the Management of Localised Prostate Cancer: A Systematic Review'  [Doctors name removed by moderator] and others.


http://dx.doi.org/10.1016/j.eururo.2013.05.048


Given my simplistic understanding of statistics as a non-medic,  I went straight to the conclusion and was extremely troubled to read:  


'Finally, we did not address the level of evidence that should drive change. In the studies included, no prospective development study was powered on oncologic outcome, and only two series had a follow-up >5 yr; therefore, no significant conclusion on disease control could be derived.  Certainly, high-quality effectiveness studies comparing focal therapy to standard treatments (level 1 evidence) are needed to change practice.'


So what is going here?


I have a number outstanding Freedom of Information Requests, one of which is currently being investigated by the Information Commissioner for a wholly inadequate response from the said unnamed Hospital Trust.


I will update in due course.


 

Edited by moderator 08 Jan 2024 at 18:26  | Reason: Not specified

User
Posted 09 Jan 2024 at 00:47

Interesting ref to studies and I, as well as I am sure others, will be interested to see what response you receive. As a full time Carer for my wife who has advanced Dementia I don't have time to do much research now.


Normally, I don't set great store by what the press say about PCa treatment, often dramatizing what many already know, although the list of top Surgeons for Prostatectomy as recommended by Surgeons and listed in the Daily Mail is sometimes referred to on this forum as well as elsewhere; so you may be interested in this link as it includes reference to HIFU. Certainly, NICE have blown hot and cold over HIFU but another volte face appears to contradict their stance you posted in your early post. https://www.dailymail.co.uk/health/article-12284029/Prostate-cancer-care-revolution-UK-scientists-leading-way-raft-breakthroughs.htmlMore specifically, it says 'While advances in treatment can be slow — it takes time to carry out the research needed to prove they are effective — in March, the European Association of Urology changed its guidelines to support so-called 'focal' therapy'. This shift in position by the European Association of Urology is significant because it brings it in line with guidance from the UK National Institute for Health and Care Excellence (NICE), and should mean more men are offered it now it has the backing of a well-respected professional body, says Professor Ahmed.


'This change is going to have a major impact on the dissemination of focal therapy. It will lead to more centres taking it up and offering it to their patients.'


Until now it has been available only privately in the UK and in a small number of NHS hospitals — Imperial College Healthcare NHS Trust, University College London Hospital, Hampshire Hospitals, University Hospitals Southampton and Sunderland Royal Hospital, despite NICE recommending it.


Professor Ahmed's research shows focal therapy leads not only to a better quality of life for prostate cancer patients, but is also cheaper, making it a 'double win'.


'We think that around 30 to 40 per cent of men who have surgery or radiotherapy could have focal therapy but are not even told about it — that's an estimated 10,000 to 12,000 men a year,' he says.


'Now the guidelines have changed, physicians are going to have to tell them about focal therapy so that men can make an informed choice.'


The date of the article was originally 10th July 2023


 


 


 


 


 


 

Edited by member 09 Jan 2024 at 00:59  | Reason: to highlight link

Barry
User
Posted 10 Jan 2024 at 14:03

Hello Barry


yes all very fine and encouraging for men to take on HIFU. And I can see how they would be attracted to it based upon skimpy advice from Ahmed and professor ME. But this procedure has the backing of a powerful International Corporation, SonaCare which has formed alliances with leading prostate cancer specialists in many hospitals worldwide. 

Men must be properly counselled in order to  give informed consent. We have discussed already with yourself and Andy. We all agree the 'informed' part of consents is lacking:


-actual failure rates 35-42% grossly underplayed by leading specialists. sorry they forgot to tell you.


-toxic secondary treatments not raised (in my own experience) then,  as is highly probable, HIFU treatment fails to the extent you need surgery of RT,  you'll discover incontinence and erectile function have already been damaged by HIFU-induced fibrosis of pelvic muscles and nerves. sorry they forgot to tell you.


-men coming off active surveillance must be given the option of prostatectomy or RT alongside HIFU. sorry they forgot to tell you.


-men considering HIFU must be told under NHS (at least at the London Hospital I attended), that a 'nerve spare' prostatectomy if you later need it is not offered. So its bye bye to erectile function guys unless you cough up £22k for a private op. sorry they forgot to tell you


As many men on here have, ive sat in waiting rooms to see cancer specialists alongside a pitiful group of pale worried men with their wives, all studying their shoes.


Corporate misinformation is being given out in 'HIFU Centres of Excellence' with, surprise surprise, the generous support of the US manufacturer of the HIFU equipment.


If men with cancer are properly counselled then fine, your eyes are wide open, go for it.

I was trapped into a decision to proceed with HIFU on bad info, a decision I bitterly regret. 


 


 

User
Posted 17 Feb 2024 at 11:35

Hi Paul,


I can fully understand your anger and frustration, because you believe, that you've been physically, mentally and financially damaged, by HIFU treatment. It seems some of your grievance is directed at misinformation regarding treatment and the contravention of NICE guidelines in relation to its use.


I can fully empathise with you. My circumstances don't involve HIFU, but they do echo your doubts on misinformation and the relevance of NICE guidelines.


I was given the wrong cancer staging, as was the first MDT meeting, when they recommended I was suitable for AS. I was therefore denied my right to make a fully informed treatment plan. Not only that, but by error, the 6 month follow up MRI, I was supposed to have, was not booked, and was delayed by a further 14 months. When they got the results the cancer and significantly progressed. This resulted in me having a robotic prostatectomy. 


During this 'care plan', in my opinion, there had been blatant breaches of care and NICE guidelines had been 'strayed' from on at least two occasions.


This all occurred in COVID restrictions. The communications between me and NHS consultants were woeful. It was not until a year after initial diagnosis, when I got copies of my full medical records, that I discovered these mistakes.  


I then began my "Quest for justice". Over the next year I formally complained to the Trust, three times and was fobbed off with incorrect, unclear, or contradictory replies. I then went to the PHSO, who informed me that they would request the Trust to try harder next time and reopen my complaint. They are, in their usual tortoise paced manner, reinvestigating my case. The whole complaints system is a complete joke.


I've even sought legal advise and was basically told, had the errors resulted in me having incurable cancer, I may have had a claim for clinical negligence, but as thing stood, because I'd just avoided this, there was no legal case to answer.


What I've learnt on my journey, is ensure that you keep full records of all treatment and consultations. The wheel does fall off, but no-one will ever admit not checking them. As for NICE guidelines, they are in a lot of cases, just that, guidelines, and legally not worth the paper they're written on. 


I've also learnt that the medical profession will quote NICE guidelines when it suits their case but pooh-pooh them, when they don't.


In addition to all of this, the nature of our disease, can result in so many different outcomes, making it impossible, to prove that you have been adversely effected by treatment errors.


I often see on here, people who have been badly let down in their care. I see blatant breaches of care, creating the likelihood of much worse outcomes. People should be made accountable for making these mistakes but they're not.

Edited by member 17 Feb 2024 at 12:39  | Reason: Spelling.

User
Posted 18 Feb 2024 at 01:47

As this thread has got off topic, I will relate a situation which does not concern PCa but does say something about the way patients can be treated within the NHS and some consultants.


Whilst living in Surrey, I was diagnosed with Glaucoma and was fortunate to be monitored within the NHS by what people generally regard as the foremost UK eye hospital in London. When I moved to Devon, I transferred to my local hospital where they tried 3 times to dilate my eyes at my appointment and three times later in the week without success. I will also say that a local branch of a High Street group of opticians have also had the same result. I therefore decided to transfer to another more specialized Hospital in Devon who were able to dilate my eyes and regularly monitor me and change drops. This went well until covid and I had a delayed appointment in May of last year wherein my eyedrops were changed and I was told that I should see a Surgeon in 3 months about treating my cataracts. being aware that appointments for Surgery were delayed, I left it for 6 months before enquiring when I would get my appointment. I was told that they were working through the lists but there was still some waiting time. I was given an appointment last week but decided to ring them to confirm I would be seeing a Surgeon rather than just having the usual checks but said I would not be seeing a Surgeon. I said this was well overdue and that I wanted to see a Surgeon. They rang me back to say they had had a cancellation and that I could see the Surgeon if I took an early appointment the next day.


So, I arrived in good time and had all the usual tests and then saw the Consultant who proceeded to repeat a test done a few minutes earlier by somebody else and then said he would insert a replacement mono lens in each eye and which eye would I like done first? He also said the first eye could be done in about two months. Having read up about possible treatments, I wanted to ask whether I might be a candidate for the 'accommodating or multifocal lenses' approved by NICE but only available privately, or one of the combined treatments available for cataracts and Glaucoma, could an operation for Glaucoma be done after a lense for cataract had been done. But much to my surprise, the Consultant just walked out the door repeating as he left the room that I was just having a mono lense inserted in each eye for cataracts and and would need glasses for reading. I didn't even get the chance to ask if I was likely to continue to need drops. So I estimate that the consultation lasted about a couple of minutes. An assistant then handed me a copy of a leaflet that didn't answer my questions and saw me out!


In view of this very unsatisfactory appointment, I intend to get a private appointment with the aforementioned Hospital in London. It may be that what I have been offered is best in my case or it could be another option is possible if I go private. At least by paying for a consultation I will know what I might be missing out on. I know all Consultants are very busy but avoiding my questions and walking out on me in that fashion is not satisfactory.

Edited by member 18 Feb 2024 at 13:03  | Reason: Not specified

Barry
User
Posted 19 Feb 2024 at 10:35

Hi Adrian


sorry to hear your story and the brick walls you have faced. Contrary to Lyns assumption I am not in the least angry. My profession involves deep research so Im happy to follow the bread crumbs and see where they lead, very much with the 700 or so other men who were sold a treatment which NICE rightly described as lacking efficacy and which, as I have revealed in research, can cause the growth of more aggressive cancers within the prostate. I take note the ancient Chinese writer Tzu Sun, when you act in revenge, first dig two graves. If I can get some compensation for my damaged health, assuming it is found I deserve it, all well and good. And Im in no hurry to collect the breadcrumbs, but collect them I will.


I do agree with you, just looking backwards at events, trusting and taking what some NHS consultants dish out is grossly unfair if they are at fault.


But important to focus on getting better first and not let those mistakes or misconduct mess up your life going forwards.


 


 

Edited by member 19 Feb 2024 at 11:08  | Reason: Not specified

User
Posted 19 Feb 2024 at 11:27

Originally Posted by: Online Community Member
sorry to hear your story and the brick walls you have faced.


Thank you Paul for your kind words and sound advice.


I'm sorry that I strayed from your HIFU thread, but, although ours are very different scenarios, I felt that we shared very similar frustrations. 


My PC bookmarks, is full of NICE guidelines and research which clearly cast doubt on the treatment plan I was advised to take. However, as previously, stated it's virtually impossible to prove that the mistakes made had left me with much less favourable outcomes.


During recovery, I spent hundreds of hours, trying to make my case. Was it a waste of time? Not really, it gave me something to focus on, and took my mind off the treatment side effects. I am very tenacious and hate injustice. At least the research I did, put my mind at rest, that I'd done my best to fight back.


All the best mate.


   

Edited by member 19 Feb 2024 at 11:36  | Reason: Typo

User
Posted 24 Apr 2024 at 13:08

I have had some criticism on here from members and even intervention from the Moderators.  All I have sought to do is to inform men facing prostate cancer of the truth about HIFU as a treatment.


To recap, a top consultant at a major London Cancer Hospital effectively promoted HIFU to me and my GP as follows (I quote verbatim):


"In terms of oncological success over a 5-10 year period, 85% of patients will just need one treatment, 10% of patients will need a second treatment and 5% of patients will need some other form of treatment; either in the form of surgery or radiotherapy, should the policy of tissue preservation fail to control the disease."


I have now have received under FOI a response from the same major London Cancer Centre to my request for data which discusses the ERUS presentation written by another a surgeon at the same hospital.  The ERUS presentation has been previously posted by me and others but here is the link again:


https://www.urotoday.com/conference-highlights/eau-robotic-urology-section/erus-2018/106785-erus-2018-a-pathological-landscape-of-recurrence-after-focal-hifu-forprostate-cancer-a-high-rate-of-adverse-findings-at-salvage-prostatectomy-and-limitedsensitivity-of-mri.html


So within the FOI response I received is the following statement:


"Results


Prior to HIFU, 55.9% had multifocal disease and 47.1% had Gleason 3+3 outside the treatment field. Median time to failure was 16 months (IQR 11-26). Indications for sRARP [salvage prostatectomy] were IFR [in-field recurrence] 55.8%, OFD [out-field detection] 20.6%, or both 23.5%.


On sRARP histopathology, significant cancer (ISUP>or=2) was present in 99.1% / 81.3% / 79.4% in-field, outfield and both respectively. 82.4% were adversely reclassified at " [text cut off]


Id be happy to supply copies of this FOI response to the Moderator if they're interested as the FOI is not as far as I can see online.  


When I discovered my cancer had reached the danger zone of Gleason 4 I was naturally psychologically vulnerable to 'a promise from heaven' like HIFU. But this research suggests HIFU is more like a game of whack-a-mole. You treat one lesion and another jumps into Gleason 4, either in or out-field or (as in my case) bilaterally.  Then upon HIFU failure ,without warning, I was told the NHS will not undertake a nerve-spare prostatectomy.  I was pushed towards radiotherapy or going private for an intra-operative nerve-spare prostatectomy to have any hope of saving erectile function.


 

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User
Posted 29 Dec 2023 at 11:34

I sure do see a lot of cases of failed HIFU in support groups considering what a minority treatment it is, but I'm also aware that support groups are not representative of outcomes - those with good outcomes are less likely to hang around in support groups afterwards. I've even had a few guys who do have good HIFU outcomes so far who are annoyed because they weren't told that any salvage treatments required afterwards would likely have poor QoL outcomes, or that the HIFU wasn't aiming to cure all the cancer, only the two largest lesions, and they're back on Active Surveillance for the rest of the cancer.


There does seem to be a big gap between what the focal therapy centres publish as results, and what urologists see as the HIFU outcomes.


It is a general problem with all treatments that patients are not talked through followup options, yet around 30% of all initial treatments fail to cure and need follow-up treatments of some type. How many guys going in to a prostatectomy are told 30% will need more treatment? I think the figure is similar for radiotherapy too. Since salvage treatments almost always have a poorer QoL outcome than if you'd had that as your first/primary treatment, this sort of thing should be discussed, specifically what your specific chance of requiring salvage treatment is (which might be higher or lower than the general 30% figure), and what the follow-up options might be.

Edited by member 29 Dec 2023 at 11:39  | Reason: Not specified

User
Posted 29 Dec 2023 at 11:43

I should add that I feel very lucky that my hospital told me my chance of needing follow-up treatment after prostatectomy was probably >50%. It meant I decided to skip that procedure and go for one more likely to cure me first time, and hence I didn't have to deal with any of the prosatectomy side effects.

User
Posted 29 Dec 2023 at 12:05

You are indeed lucky Andy. I was not so well informed of actual success rate or toxic secondary treatments or option of a primary prostatectomy which, had I had the correct counselling, i would not have agreed to HIFU. You might find the EU perspective interesting in this systemic review of all research earlier this year. See page 47.


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

User
Posted 29 Dec 2023 at 21:35
Very sorry for the way it's gone for you Paul. It would seem HIFU can damage some men and this can be problematic when followed by RP. A similar thing can happen if RP is done after RT. I was told that after my RT had failed it was almost certain I would have permanent urinary incontinence if i opted for RP. It did take a second HIFU to vaporize my tumour and I did not suffer any residual side effects. Two years plus on my PSA was low and no cancer was seen in the Prostate and I was told I could consider myself in remission. It's now 3 years on and my PSA when last checked was stable and low, so perhaps I am one of the lucky ones for whom HIFU has worked out well. Even if the cancer comes back it will have been deferred for a few years and I will have avoided HT. All treatments have their failures and you can never know how it is going to work out. You hope FT will do the job and with minimal side effects. If it doesn't, just as with failed RT it makes RP more difficult with greater risk of adverse side effects. Alternatively, if you go straight to RP, you miss the better chance of minimal side effect of FT.. It's a lottery! I do agree that men should be made aware of not only potential immediate results of treatment and side effects but also how this night impact further treatment should this be necessary, before an individual bets on his treatment.




Barry
User
Posted 29 Dec 2023 at 22:05

Thank you Barry. Ill keep my fingers crossed for you.


No-one minds entering that lottery if they are given the real odds. So yes I agree all treatments have their risks and the biggest is metastasis of the cancer. A senior clinician manages the HEAT register on behalf of the manufacturer of the equipment. Strangely, he's the only source I can find for the 15% HIFU failure rate I was quoted.


https://www.sciencedirect.com/science/article/abs/pii/S1078143914002178


My NHS surgeon told me after a year both primary RARP and salvage RARP catch up with each other so I remain optimistic about recovery of the damage HIFU has done post SRARP. Its early days. 

Nice to hear from fellow med students of prostate  cancer!


All the best


Paul

User
Posted 30 Dec 2023 at 09:46

Just to say, I think HIFU as a salvage treatment after brachytherapy and in-prostate recurrence does sound a sensible option if it is possible since although recurrence in the target area after radiotherapy isn't that common, it is more likely to be focal where the brachytherapy just missed a bit than an initial diagnosis is likely to be focal. That's certainly something I would look at in this case.

User
Posted 30 Dec 2023 at 10:30

Hi Andy, im not familiar with brachytherapy. My thoughts on the accuracy of focal therapies are, as I understand it, the working hypothesis is to kill an 'index' lesion. There seems continuing conflict amongst clinicians about this approach reflected by the increasingly cautious approach from NICE. It is widely accepted PC is multi-focal disease and not limited to a single or 'index' lesion. The accuracy of focal treatment is also limited by not having real time MRi scanning during the op which is why they really cant predict cancer outcomes of FT.

User
Posted 30 Dec 2023 at 10:56

I am also somewhat skeptical that prostate cancer is focal. Mostly it isn't, and when it is, I suspect it's just that it's been caught before more lesions have become visible.


By the way, the NICE approach is decreasingly cautious. Before the latest change, it was always regarded as entirely experimental.

User
Posted 30 Dec 2023 at 11:36

No I dont think thats right Andy. The 2023 guidance upgraded to 'Special Arrangements' for Clinical Governance, Audit or Research from 'Normal Arrangements' adopted in March 2005.


..maybe in part because a German Study was stopped due to safety concerns: 


https://doi.org/10.1007/s00345-023-04352-9


 

User
Posted 30 Dec 2023 at 14:13

 


As regards HIFU, the two major systems are the French Ablatherm which was followed by the USA Sonablate, the latter being more used in the UK and certainly at UCLH. There is now a further development called Tulsa-Pro undertaken in bore MRI scanner with heat emitter entering via urethra rather than the rectum, so this may be a more accurate way of administering HIFU. Other forms of Focal Therapy have already been done in bore MRI scanner such as FLA (Focal Laser Ablation). So treatment advances.  Generally, Focal Therapy is used to destroy only what are considered significant tumors, thereby preserving function and reducing side effects, although whole gland ablation can be done with more adverse effects. This does of course raise the possibility that what might at the time be considered insignificant tumours, may yet become significant ones.


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9231661/


https://docplayer.net/48824246-Heidelberg-first-clinical-experience-with-profound-medical-inc-s-mri-guided-tulsa-pro.html


 

Edited by member 30 Dec 2023 at 14:26  | Reason: to highlight links

Barry
User
Posted 30 Dec 2023 at 14:42

Hi Barry


Re Targeting the lesion etc....


yes happened to me at first. Try retyping the link address manually.


 


paul

User
Posted 30 Dec 2023 at 14:56

Barry


or just google: 


"hashim ahmed targetting the lesion"


and note the financial disclosures- this clinician is also supported by the manufacturer 


 


paul

User
Posted 30 Dec 2023 at 16:59

Strange that Paul.  I tried a couple of time using your link and it didn't work but subsequently when I copied and pasted it into my reply and checked it, it did work, so I edited out thinking it must have been a glitch.


I think a lot of manufacturers and providers tend to over egg their products and services. Several times i have nearly bought things and then having read some of the very uncomplimentary reviews, as well as the fake excellent ones, have decided against.  Even more important to carefully consider matters when these affect your health and possibly your life.  

Barry
User
Posted 30 Dec 2023 at 17:31

Yes Barry agreed on your second point


Maybe someone didnt want the link to forward. Makes no sense to me.

User
Posted 31 Dec 2023 at 11:53

So here us a link to the full Seminar Article by Professor Ahmed who appears to be the source of the 15% failure rate I was quoted pre-HIFU:


https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.sciencedirect.com%2Fscience%2Farticle%2Fpii%2FS1078143914002178&data=05%7C01%7C%7C5564629939d4431df98a08dbbaab0c27%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638309016024723199%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=ipoiRWWLEjSuOrFP99IFlVmuJcyQp%2BkDD8CLlOUJ9js%3D&reserved=0


 


 


Professor Ahmed is Chair  of  Focal Therapy Uk, in charge of the HEAT Registry which is approved by NICE to record data on the success of the HIFU procedure in the Uk. He receives support from many public and private sources including SonaCare Medical, the US manufacturer of Sonablate 500 the HIFU device widely in use. 


https://londonprostate.co.uk/areas-of-interest/hifu-treatment-for-prostate-cancer/


 


 


 


 


 

Edited by member 31 Dec 2023 at 13:14  | Reason: Not specified

User
Posted 31 Dec 2023 at 16:42

Has anyone else considering or had the HIFU procedure been advised it is well tolerated and 10% may require a second treatment with another 5% needing radical treatment, either radiotherapy or surgery with 5-10 years?

User
Posted 31 Dec 2023 at 19:07
As far as I can recall, the members on here who have had HIFU have all been fully aware that it is a focal treatment with a high chance of recurrence / further treatment needed. Those who join the forum with an overly glossy view tend to be advised of the risk rather quickly by other members and some then decide not to go ahead 🤔
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 31 Dec 2023 at 19:19

Thanks Lyn
Good perspective, how come you know about this?


 

User
Posted 02 Jan 2024 at 07:12

Hi Lyn


of course anyone gaining a glossy view of the procedure should be made aware this is being promoted by a number of UK hospitals following partnerships agreed with the manufacturer of the HIFU equipment: 


https://www.biospace.com/article/releases/-b-sonacare-medical-b-partners-with-university-college-london-to-create-center-of-excellence-for-hifu-surgical-ablation-technology-/?s=63


 


it is troubling to me in their press announcements they fail to mention the toxic effects HIFU has on secondary treatments. These affect recovery of continence and erectile function due to HIFU-induced fibrosis and were well described in a study in 2021 Im sure your aware of: Bhat et al (European Urology Focus 2021 in which he reports: "However, the actual effect of focal ablation on the local anatomy is not well studied and cannot be predicted, and therefore could potentially affect surgical outcomes...The aim of FT may be to minimize collateral damage, however, this is often not the finding at S-RARP. Any form of FT does have significant collateral damage, leading to a more radical and invasive S-RARP (salvage prostatectomy) that is comparable to S-RARP following whole gland treatment (ablation vs radiation) in terms of technical challenges faced. Therefore one needs to be cognizant of the possibility of increased fibrosis leading to less NS(nerve spare) and more fibrosis of the pelvic floor muscles preventing good results for potency and continence. Poor continence is due to loss of apical support because of fibrosis of the endopelvic fascia, and traction injury to the nerves. The latter also affects postoperative potency. The failure rate of partial gland ablation ranges between 35% and 42%"


If I buy a washing machine there are excellent notes on its affect on the environment, troubleshooting fixes etc. etc. Dont men with Prostate Cancer deserve equivalent advice from their clinicians?


I was not told any of this, only that its a very well tolerated procedure with 15% chance of failure with the option of a second treatment, or if your unlucky in an 5% category, you'll need radical therapy, surgery or radiotherapy. Ive was forced to pay privately for a nerve spare prostatectomy £22k. Now im trying to recover continence exercising HIFU- damaged pelvic floor muscles 120 times a day. I thought the NHS was there for us? 


 

Edited by member 02 Jan 2024 at 07:18  | Reason: Not specified

User
Posted 02 Jan 2024 at 17:48
Paul

As I intimated previously and nobody disagreed, you should have been made aware of how HIFU could impact further treatment.

You question the statistics and site the small trial in Germany where only 29 men were treated before discontinuing HIFU, yet on their own omission they only administered one session whereas other studies take two procedures as the protocol for HIFU.comparison. Also, with only 29 men treated, one has to question how good/experienced they were in doing the procedure. The Professor who administered HIFU to me is on record as having done 800 and is said to have now done over 900 procedures, so technique has improved along with better identification of suitable men. Also, you can't consider the results of one small trial not using recognised protocol as definitive for HIFU worldwide. There are often differences in outcomes for various treatments.reported in different trials but I would have thought that the Chair of Focal Therapy would be in a good position to give a general view. You just can't compare washing machine failure rates with PCa treatments, particularly as much will depend on correct patient selection.

As regards UCLH collaborating with the manufacturers of Sonarblate, I think this is usual and to an extent necessary for progress. That way problems can be jointly considered and improvements made. All the expanding number of hospitals who use HIFU must be happy with results to continue to use it on an increasing scale. I stand to be corrected but it is my understanding that even Prostate Cancer UK among others sponsor Focal Treatment research at UCLH.

Again, I am very sorry this has worked out badly for you, particularly as you were not well enough informed and based your treatment decision on what you believe were unrealistic odds.


Barry
User
Posted 02 Jan 2024 at 18:34

Hi Barry please delete ref to a hospital I was ticked off ny the moderator!


thanks as always for well thought out response, ill reply later

User
Posted 04 Jan 2024 at 15:09

Hello Barry


As always I wish you and all men a speedy and sustainable recovery from cancer whichever treatment pathway they selected and thanks again for your detailed reply.


Just to correct, the Study by Bhat (2021) is a US Study not the German Study you refer to which is by Duwe (2023).


Im pleased professor CM who treated you at a London Hospital has the experience of c.900 HIFU operations.  The industrial scale of HIFU treatment at the hospital is not at all surprising to me.  Her boss, professor ME, the Director of Surgery at the unnamed hospital appears to have been engaged in promoting the performance of HIFU equipment on behalf of SonaCare, the manufacturer at International Conferences. I say 'promoting' because use of failure rates of the Sonablate 500 device backed up actual research would not be to 'promote' its use, but simply to give specialist advise from an expert in the field.  In this example in 2017, ME quotes the (as far as I can see) an unsubstantiated 15% failure claim for the device in exactly the same terms used by Hashim Ahmed in the 2014 Seminar Article;


https://www.youtube.com/watch?v=_rX8V6wzfhE&ab_channel=SonablateHIFU


Here again is Ahmeds' 2014 Seminar Article


https://gbr01.safelinks.protection.outlook.com/?url=https%3A%2F%2Fwww.sciencedirect.com%2Fscience%2Farticle%2Fpii%2FS1078143914002178&data=05%7C01%7C%7C5564629939d4431df98a08dbbaab0c27%7C84df9e7fe9f640afb435aaaaaaaaaaaa%7C1%7C0%7C638309016024723199%7CUnknown%7CTWFpbGZsb3d8eyJWIjoiMC4wLjAwMDAiLCJQIjoiV2luMzIiLCJBTiI6Ik1haWwiLCJXVCI6Mn0%3D%7C3000%7C%7C%7C&sdata=ipoiRWWLEjSuOrFP99IFlVmuJcyQp%2BkDD8CLlOUJ9js%3D&reserved=0


The issue I have is much much wider.  As we said,  Ahmed is Chair of Focal Therapy Uk, in charge of the HEAT Registry which is approved by NICE to record data on the success of the HIFU procedure in the UK. At the same time, he is being paid by "SonaCare Medical/Focused Surgery/Misonix Inc/UKHIFU (manufacturers and distributors of the Sonablate 500 HIFU device) for travel to conferences/meetings and for training surgeons in the use of the Sonablate 500 HIFU device" as well as many other private and public grant sources.  All well and good on the face of it.  As you correctly say, developing and refining cancer treatments should involve public and private interests and expertise working together in the best interests of patient care.  There is nothing wrong here except, I can find no research basis for the claimed 15% failure rate of primary HIFU Ahmed quotes.  In his 2014 he refers to "Current data from more than 3,000 men treated internationally.." as the data source of the assertion, yet the HEAT Registry was only launched on 11th April 2017 by SonaCare with an initial 1500 patients. So he didn't get his data from the HEAT Register.  It may have come from the US and probably from SonaCare themselves who I believe operate a fee-for-use and maintenance of the equipment (I may be wrong). So they would be collecting usage and failure data.  


Coming back to washing machines, if you wanted to sell many many more machines, making over-optimistic claims about their performance would attract millions more customers, boosting profit margins.  I have to say, I find the fact I was advised in exactly the same terms used by Ahmed in 2014,  repeated by professor ME in the above you tube clip in 2017, and written in a letter to my GP in 2021 troubling to say the least.


I don't have the relevant medical training or expertise in statistical analysis to interrogate research studies in any depth. I simply read the results of 9 Studies completed between 2017 and 2023. Here is my quick summary of reported failure rates of primary HIFU, partial ablation:


2017 Garcia et al (Uni Paris-Descartes, Memorial Cancer Centre NY, USE, CEMIC Uni Hosp. Beunas Arries, LapPaz Uni Hosp. Madrid  - Reported primary HIFU failure 28.1% at 6 yrs


2018 Guillaumier et al (UCLH, Imperial + UK Hospitals, Uni Med Centre, Utrecht, Netherlands) - Reported primary HIFU failure 37% at 5 yrs (noted in Editorial comments in 2019 Thompson et al-Table 3)


2019 Marconi et al (UCLH, Guys, Kings, Imperial) Reported primary HIFU failure 26% at 1 yr; 52% at 2yrs, 64% at 3 yrs.


2019 Thompson et al (UCLH with Barts, Q Mary, Uni Oxford) Reported primary HIFU failure 37.1% at 2.4 yrs


2019 Stabile et al (UCLH, Imperial, CharingX, San Raffaele Uni, Milan) Reported primary HIFU failure 15% at 2yr; 41% at 5yrs, 46% at 8 yrs.


2020 Thompson et al (UCLH) Reported primary HIFU failure estimated 35% -40% over 12yrs


2021 Bhat et al (Sunt Med Uni, NY, USA) Reported primary HIFU failure generally estimated 35% -42%


2022 Reddy et al (Imperial, UCLH, UK Hospitals, Utrecht, Netherlands, Cancer Centre in Luzern Switzerland) Reported primary HIFU failure 31% at 7 yrs


2023 Duwe et al (Johannes-Gutenberg Uni with Carl-Gustav-Carus Uni, Germany Reported primary HIFU failure 37.93% at 2 yrs


15% failure rate seems to be more of a sales pitch from this research. All this does not paint a happy picture given that 6,177 primary HIFU procedures were undertaken at the unnamed London Hospital referred to above (my FOI established this data).  


Q1/ Would you take odds of 15% failure with the option of a second HIFU to avoid radical treatment with associated morbidity when your also told the other option is to 'watch' Gleason 4 cancer and see if it grows?  I would and did. But I was not counselled of the collateral damage to nerves and pelvic floor muscles and associated problems this causes later in radical treatment; or given the option of a primary prostatectomy or radiotherapy at that stage- see Q2/


Q2/ Would you take odds of 35-42% failure when its also pointed out incontinence and recovery of erectile function are much worse due to HIFU-induced fibrosis of nerves and muscles if you then need to go onto radical treatment, and if your also given the option of a primary prostatectomy or radiotherapy instead of taking the HIFU gamble? I would not and would definitely have taken the primary prostatectomy route.


So you see the wider picture is, there are serious questions around the care offered by the NHS to prostate cancer patients at this hospital and perhaps other "Centres of Excellence in HIFU" which may mean up to, say 3000 to 5000 men may have taken a treatment pathway they would not otherwise have chosen due to lack of, and/or inaccurate counselling, disabling their informed consent.


We should also consider the many tens of millions of pounds of NHS budget spent on potentially abortive MRI and PET scans, biopsies, consultations and hospital stays; and the extension of cancer treatment for those men with the amplifying effect we know it has on stress for them and their families. That is why I feel strongly about this.


 


 

Edited by member 06 Jan 2024 at 12:53  | Reason: Not specified

User
Posted 08 Jan 2024 at 14:10

My concerns centre upon advice in a Seminar Article from Professor [Doctors name removed by moderator] quoting 'data from more than 3000 men treated Internationally', and a failure rate of just 15% for HIFU partial ablation, widely contradicted in every study I have read.


As I have said the failure rate quoted by [Doctors name removed by moderator] and repeated in the exact terms by [Doctors name removed by moderator] in a promotional video made by the manufacturer of the HIFU equipment, SonaCare in 2017, was also included in verbal advice to me confirmed in a letter to my GP from [Doctors name removed by moderator] in late 2021.  So the credibility of the source must be extremely high for the Director of Surgery in a major London Hospital to be issuing the advice to potentially 6,177 men with prostate cancer over the last five years?


I have now checked the quoted data source referred by [Doctors name removed by moderator] which is a systematic review of current research dated May 2013 entitled; 'The Role of Focal Therapy in the Management of Localised Prostate Cancer: A Systematic Review'  [Doctors name removed by moderator] and others.


http://dx.doi.org/10.1016/j.eururo.2013.05.048


Given my simplistic understanding of statistics as a non-medic,  I went straight to the conclusion and was extremely troubled to read:  


'Finally, we did not address the level of evidence that should drive change. In the studies included, no prospective development study was powered on oncologic outcome, and only two series had a follow-up >5 yr; therefore, no significant conclusion on disease control could be derived.  Certainly, high-quality effectiveness studies comparing focal therapy to standard treatments (level 1 evidence) are needed to change practice.'


So what is going here?


I have a number outstanding Freedom of Information Requests, one of which is currently being investigated by the Information Commissioner for a wholly inadequate response from the said unnamed Hospital Trust.


I will update in due course.


 

Edited by moderator 08 Jan 2024 at 18:26  | Reason: Not specified

User
Posted 09 Jan 2024 at 00:47

Interesting ref to studies and I, as well as I am sure others, will be interested to see what response you receive. As a full time Carer for my wife who has advanced Dementia I don't have time to do much research now.


Normally, I don't set great store by what the press say about PCa treatment, often dramatizing what many already know, although the list of top Surgeons for Prostatectomy as recommended by Surgeons and listed in the Daily Mail is sometimes referred to on this forum as well as elsewhere; so you may be interested in this link as it includes reference to HIFU. Certainly, NICE have blown hot and cold over HIFU but another volte face appears to contradict their stance you posted in your early post. https://www.dailymail.co.uk/health/article-12284029/Prostate-cancer-care-revolution-UK-scientists-leading-way-raft-breakthroughs.htmlMore specifically, it says 'While advances in treatment can be slow — it takes time to carry out the research needed to prove they are effective — in March, the European Association of Urology changed its guidelines to support so-called 'focal' therapy'. This shift in position by the European Association of Urology is significant because it brings it in line with guidance from the UK National Institute for Health and Care Excellence (NICE), and should mean more men are offered it now it has the backing of a well-respected professional body, says Professor Ahmed.


'This change is going to have a major impact on the dissemination of focal therapy. It will lead to more centres taking it up and offering it to their patients.'


Until now it has been available only privately in the UK and in a small number of NHS hospitals — Imperial College Healthcare NHS Trust, University College London Hospital, Hampshire Hospitals, University Hospitals Southampton and Sunderland Royal Hospital, despite NICE recommending it.


Professor Ahmed's research shows focal therapy leads not only to a better quality of life for prostate cancer patients, but is also cheaper, making it a 'double win'.


'We think that around 30 to 40 per cent of men who have surgery or radiotherapy could have focal therapy but are not even told about it — that's an estimated 10,000 to 12,000 men a year,' he says.


'Now the guidelines have changed, physicians are going to have to tell them about focal therapy so that men can make an informed choice.'


The date of the article was originally 10th July 2023


 


 


 


 


 


 

Edited by member 09 Jan 2024 at 00:59  | Reason: to highlight link

Barry
User
Posted 10 Jan 2024 at 14:03

Hello Barry


yes all very fine and encouraging for men to take on HIFU. And I can see how they would be attracted to it based upon skimpy advice from Ahmed and professor ME. But this procedure has the backing of a powerful International Corporation, SonaCare which has formed alliances with leading prostate cancer specialists in many hospitals worldwide. 

Men must be properly counselled in order to  give informed consent. We have discussed already with yourself and Andy. We all agree the 'informed' part of consents is lacking:


-actual failure rates 35-42% grossly underplayed by leading specialists. sorry they forgot to tell you.


-toxic secondary treatments not raised (in my own experience) then,  as is highly probable, HIFU treatment fails to the extent you need surgery of RT,  you'll discover incontinence and erectile function have already been damaged by HIFU-induced fibrosis of pelvic muscles and nerves. sorry they forgot to tell you.


-men coming off active surveillance must be given the option of prostatectomy or RT alongside HIFU. sorry they forgot to tell you.


-men considering HIFU must be told under NHS (at least at the London Hospital I attended), that a 'nerve spare' prostatectomy if you later need it is not offered. So its bye bye to erectile function guys unless you cough up £22k for a private op. sorry they forgot to tell you


As many men on here have, ive sat in waiting rooms to see cancer specialists alongside a pitiful group of pale worried men with their wives, all studying their shoes.


Corporate misinformation is being given out in 'HIFU Centres of Excellence' with, surprise surprise, the generous support of the US manufacturer of the HIFU equipment.


If men with cancer are properly counselled then fine, your eyes are wide open, go for it.

I was trapped into a decision to proceed with HIFU on bad info, a decision I bitterly regret. 


 


 

User
Posted 16 Jan 2024 at 11:04

Speaking of what they tell you, take a look at a website set up by a group of urologists under the chairmanship of [Doctors name removed by moderator]. The website is committed to promoting the use of HIFU, Focal.Therapy.UK https://www.focaltherapyuk.org/


Under 'About', on the site, it states 'overall recurrence (of cancer) is 5-10% at 5-7 years versus 5-10% for radical therapy'. Now compare that claim to the systematic research review I reported above concluding a cancer recurrence following HIFU in the range 35%-42%.  The discrepancy is due to the fact that the Professor doesn't specify how long after treatment for cancer recurrence was tested, it could be 5 minutes, and he doesn't say what recurrence means. It could be infield (in the treated area), or outfield, or cancer metastasised outside the prostate gland. The claim makes a nonsense of the statement on the site 'we are committed to high quality data collection'. They are not, only to the promotion of the procedure throughout UK hospitals based it appears from this, upon misleading statistics. With no mention at all on this website of the toxic effects of secondary treatments due to HIFU-induced fibrosis I have covered in earlier posts.


All the more concerning as [Doctors name removed by moderator] is the custodian of the HEAT Registry set up by SonaCare the leading manufacturer of the Sonablate 500 HIFU device to record data on the performance of focal treatment in the UK as approved by NICE. 


The Professor's own website states  '20% to 30% of patients over a 6 to 7 year period will require a second HIFU session to be applied to the same area that was treated at the beginning. The exact risk depends on the risk of the cancer at the time of the first treatment.'


https://londonprostate.co.uk/areas-of-interest/hifu-treatment-for-prostate-cancer/


Most men with cancer being non-medical, would take from this you have 20%-30% chance of failure of the primary treatment. And they would read you can always have a second treatment.  By containing his estimate of failure to 'within the area originally treated', the professor ignores outfield recurrence which will push failure rates back up to within the 35%-42% range as the studies Ive looked into above show. 


Turning to the title of my original post "HIFU Treatment or Cancer Risk";  in a 2019 Study (Marconi et al; Robot-assisted Radical Prostatectomy After Focal Therapy: Oncological, Functional Outcomes and Predictors of Recurrence) https://doi.org/10.1016/j.eururo.2019.03.007


the UK's leading prostate cancer researchers conclude: 


'Specifically, we identified that men experiencing an infield recurrence had almost  four times the risk of developing biochemical failure (suggesting cancer spread) after S-RALP (prostatectomy following failure of HIFU), independent of margin status, Gleason grade group, PSA, or pT stage.  This suggests that those experiencing infield recurrence might have a more aggressive cancer phenotype and are thus more likely to need multimodal (more than one type of) therapy with or without systemic (radiotherapy) therapy.  One hypothesis for this finding is that an initial incomplete ablation might result in the development of 'ablation-resistant' clones that repopulate the ablation field and metastasise locoregionally. The biological mechanism of this phenomenon is yet to be described and further research exploring the role of genetic and epigenetic alterations in these tumours is ongoing'


To my knowledge no such research has been published and the hypothesis remains unresolved to this day. Perhaps it is no coincidence that the two leading research centres in prostate cancer, UCL and Oxford University are 'HIFU Centres of Excellence' in partnership with medical equipment suppliers.


Are public private partnerships like 'HIFU Centres of Excellence' leading to improved research and better outcomes for cancer patients? Or are they leading to better outcomes for the manufacturers of medical equipment? The way clinicians like [Doctors name removed by moderator] promote misleading failure rates makes me doubt the former contention.


 

Edited by moderator 16 Feb 2024 at 18:50  | Reason: Not specified

User
Posted 20 Jan 2024 at 08:54

What I fail to understand is, if you discover an oil leak in the engine of your car that car stays off road in the garage until the source is discovered and fixed, otherwise you might find your in a serious accident because the engine fails on road.  So why when, in 2019 the team at the unnamed London Hospital ME CMM HUA and others concluded in a study:


One hypothesis for this finding is that an initial incomplete ablation might result in the development of 'ablation-resistant' clones that repopulate the ablation field and metastasise locoregionally. The biological mechanism of this phenomenon is yet to be described and further research exploring the role of genetic and epigenetic alterations in these tumours is ongoing'


What were they thinking?


As a non-medic (although Im rapidly realising medical researchers flood their papers with stats and incomprehensible language to blindside the poor patients who actually deserve to be communicated to) it seems to my simple mind, they should have stopped using the Sonablate 500 HIFU device until they knew WHY it appeared to be spawning new and higher grade cancers after use?  Just like the grounding by Boeing 737 MAX when a door plug blew out in mid-flight.


To underline the issue, here is a presentation by the same unnamed hospital which was shown at the 15th Annual Meeting of the European Robotic Urology Symposium (ERUS) attended by 650 delegates from around the world which took place in Marseille from 5-7th September 2018 in which the pattern of worsening cancer after HIFU is as plain as an engine oil leak or a blown out aircraft door plug:


https://www.urotoday.com/conference-highlights/eau-robotic-urology-section/erus-2018/106785-erus-2018-a-pathological-landscape-of-recurrence-after-focal-hifu-for-prostate-cancer-a-high-rate-of-adverse-findings-at-salvage-prostatectomy-and-limited-sensitivity-of-mri.html


Am I missing something or is the momentum behind HIFU 'just too big to fail' because so many top medics careers are invested in it?


I did ask by FOI the unnamed hospital for minutes of meetings in which they discussed the above hypothesis.


They replied:


Information not held.


We cannot find evidence of these papers being discussed at any of the minuted NHS meetings within our Urology department. We often discuss research as part of informal team meetings, which occur frequently, although these are not minuted. It may be that these papers were discussed at an informal team meeting or also at UCL research meetings [which are not NHS].


 

Edited by member 20 Jan 2024 at 10:30  | Reason: Not specified

User
Posted 15 Feb 2024 at 16:33

Readers of this post may be interested in an extract from a reply I received today (15/2/24) from NICE to my concerns over 'sexed-up' advice I received at a major London Hospital prior to HIFU treatment.


"We have developed interventional procedures guidance on high-intensity focused ultrasound for prostate cancer https://www.nice.org.uk/guidance/ipg118/chapter/1-Guidance [IPG118] and focal therapy using high-intensity focused ultrasound for localised prostate cancer https://www.nice.org.uk/guidance/ipg756  [IPG756]. This type of guidance considers if interventional procedures are safe and work well enough for wider use in the NHS, and both acknowledge that there is a lack of evidence on quality-of-life benefits and long-term survival.

As such, in our guideline prostate cancer: diagnosis and management https://www.nice.org.uk/guidance/ng131/chapter/recommendations#radical-treatment [NG131] we recommend that HIFU should not be offered to people with localised (recommendation 1.3.28) or locally advanced (recommendation 1.3.34) prostate cancer, other than in the context of controlled clinical trials comparing their use with established interventions.

Although it is not mandatory to apply the recommendations that we make, when exercising their judgement, professionals and practitioners are expected to take our guidelines fully into account, alongside the individual needs, preferences and values of their patients or the people using their service.

We have developed an IPG audit tool template to support the use of NICE guidance and monitor the safety and efficacy outcomes of interventional procedures.

We do not manage the audit and completed audits are not returned to NICE, but we recommend that to ensure that any valuable insight regarding the consequences of this procedure is shared among clinicians, serious or previously unrecognised patient safety incidents should be documented and information submitted to the National Reporting and Learning System (NRLS), or the new Patient Safety Incident Management System (PSIMS), operated by NHS England, and that all adverse events involving the medical devices used in any procedure should be reported to the Medicines and Healthcare products Regulatory Agency (MHRA).

In your email you raise concerns that clinical advice given to patients falls short of our current guidance. In our guideline on shared decision making https://www.nice.org.uk/guidance/ng197  [NG197] we promote ways for healthcare professionals and people using services to work together to make decisions about treatment and care. The guideline includes recommendations on communicating risks, benefits and consequences.


Responsibility for the delivery of services (and, where relevant, the implementation of our recommendations) rests with the appropriate NHS commissioner. We would suggest raising your concerns directly with the hospital or your local integrated care board https://www.nhs.uk/nhs-services/find-your-local-integrated-care-board/ (ICB)."

Edited by member 15 Feb 2024 at 16:38  | Reason: links pasted in

User
Posted 16 Feb 2024 at 14:31

...of course I was not advised pre-HIFU that the treatment would be undertaken within the context of 'controlled clinical trials comparing their use with established interventions' as NICE require.  Nor was it. Indeed upon requesting numbers of HIFU partial HIFU failures under FOI undertaken at the unnamed London Hospital I was told ''the Trust is unable to provide the requested information because the data is not held in a manner that would allow us to easily extract the information'. So they are nowhere near it being in the context of a clinical trial as they don't even count partial ablation failures for weekly Multi Disciplinary Team review.  Strange as I thought they would be submitting this data to the HEAT Register (sponsored by the manufacturer of the HIFU device)?


Ive been wondering why the said Trust and [Doctors name removed by moderator] in particular are so keen to promote the use of the Sonablate 500 (HIFU) device. This press release from July 2013 gives a clue or two:  


https://dieurope.com/hifu-company-partners-with-university-college-london/


Note the high profile [Doctors name removed by moderator] has in promoting the device for the US manufacturer, SonaCare. It was indeed [Doctors name removed by moderator] himself who kindly advised me the procedure 'is well tolerated' with only a 15% failure rate (not the 35%-42% I have established from research previously posted) and he it was who didn't give me the option of a prostatectomy, or mention the toxic effects of secondary treatments, the upstaging of cancers or potential to spawn more aggressive disease following primary ablation as reported at salvage prostatectomy stage following recurrence of the disease after HIFU - see again this quote from a study conclusion by Marconi et al, (European Urology 76 (2019) 27-30); 


“Specifically, we identified that men experiencing an infield recurrence had almost four times the risk of developing biochemical failure after S-RALP [salvage prostatectomy] , independent of margin status, Gleason grade group, PSA, or pT stage. This suggests infield recurrence might have a more aggressive cancer phenotype and are thus more likely to need multimodal therapy with or without systemic [radiotherapy] therapy. One hypothesis for this finding is that an initial incomplete ablation might result in the development of ‘ablation-resistant’ clones that repopulate the ablation field and metastasise locoregionally. The biological mechanism of this phenomenon is yet to be described and further research exploring the role of genetic and epigenetic alterations in these tumours is ongoing”


Ive seen no such research.


[Doctors name removed by moderator] says in the press release; “The highly precise Sonablate 500 HIFU transrectal system has already proven an effective way to transition from treating the entire prostate to treating only the known prostate cancer”.   Is that right? I have it from his most senior prostatectomy surgeon (SN) that; "when they say they treated the left side we are finding the energy has spread to the other side of the prostate".  The truth is the energy causes considerable collateral damage to the pelvic floor and nerve bundles as noted in Marconi's conclusion above quoted.


Nothing wrong with public private partnerships to further the development of better treatments for prostate cancer is there? Or is there a risk of the private sector holding too great an influence over clinicians involved in selecting research topics, and in the care of cancer patients to the extent clinical judgement is put on the back burner?  

Edited by moderator 16 Feb 2024 at 18:52  | Reason: Not specified

User
Posted 16 Feb 2024 at 15:51
I get that you are angry but I think you have now gone far beyond the rules of this forum, which you agreed to when your joined. We all agree not to name medical professionals or hospitals when we join - the exception being if we are quoting research data or something very generalised.
Although you are using initials, we can all work out who the consultant is as would the general public if they come across your post while googling. The allegations you are making are very serious and very personal to your case, you are making the allegations publicly and the relevant urologist has no opportunity to defend themselves. That makes this forum and the charity PCUK vulnerable to legal action.
It is dreadful when treatment outcomes are poor and you are not the only person in this situation - I have seen many members post on here over the years, in distress because they feel side effects of RP / RT / HT / focal therapy were not explained to them properly or they hadn't realised ED would happen or they didn't know the cancer could come back. We even have a member who had RP and then discovered he never had prostate cancer at all and his results had been mixed up with someone else! What all these people seem to have understood is that this forum is not a place where they can name medics or bring an individual / organisation into disrepute. It is also interesting that, with the exception of Barry, the significant number of members on here who have had HIFU don't comment on your post even though most had their treatment with the same consultant - presumably because their treatment did not go wrong in the way yours did, or they understood that they were taking a bit of a gamble when they first opted for HIFU.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 16 Feb 2024 at 16:51

Lynn


If research is not being followed up or failure rates quoted are misleading I am open to be corrected. Yes this is a very serious matter, nearly 700 men have had HIFU where I had it in the last 5 years alone. If the moderator feels my post should be deleted Ill respect that. Equally, im open for members or anyone to present a counter informed argument. 

Edited by member 16 Feb 2024 at 16:57  | Reason: Not specified

User
Posted 16 Feb 2024 at 19:27
I see that the moderator amended your previous posts on the 8th January and your more recent posts today - there is no need to delete a whole post when the names can be removed instead
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2024 at 10:36

Hi Lyn


Read your bio. Every man on here needs someone like you on their cancer journey. Im lucky mine is a nurse of 35 years standing. Thanks for watching us.


 

User
Posted 17 Feb 2024 at 11:35

Hi Paul,


I can fully understand your anger and frustration, because you believe, that you've been physically, mentally and financially damaged, by HIFU treatment. It seems some of your grievance is directed at misinformation regarding treatment and the contravention of NICE guidelines in relation to its use.


I can fully empathise with you. My circumstances don't involve HIFU, but they do echo your doubts on misinformation and the relevance of NICE guidelines.


I was given the wrong cancer staging, as was the first MDT meeting, when they recommended I was suitable for AS. I was therefore denied my right to make a fully informed treatment plan. Not only that, but by error, the 6 month follow up MRI, I was supposed to have, was not booked, and was delayed by a further 14 months. When they got the results the cancer and significantly progressed. This resulted in me having a robotic prostatectomy. 


During this 'care plan', in my opinion, there had been blatant breaches of care and NICE guidelines had been 'strayed' from on at least two occasions.


This all occurred in COVID restrictions. The communications between me and NHS consultants were woeful. It was not until a year after initial diagnosis, when I got copies of my full medical records, that I discovered these mistakes.  


I then began my "Quest for justice". Over the next year I formally complained to the Trust, three times and was fobbed off with incorrect, unclear, or contradictory replies. I then went to the PHSO, who informed me that they would request the Trust to try harder next time and reopen my complaint. They are, in their usual tortoise paced manner, reinvestigating my case. The whole complaints system is a complete joke.


I've even sought legal advise and was basically told, had the errors resulted in me having incurable cancer, I may have had a claim for clinical negligence, but as thing stood, because I'd just avoided this, there was no legal case to answer.


What I've learnt on my journey, is ensure that you keep full records of all treatment and consultations. The wheel does fall off, but no-one will ever admit not checking them. As for NICE guidelines, they are in a lot of cases, just that, guidelines, and legally not worth the paper they're written on. 


I've also learnt that the medical profession will quote NICE guidelines when it suits their case but pooh-pooh them, when they don't.


In addition to all of this, the nature of our disease, can result in so many different outcomes, making it impossible, to prove that you have been adversely effected by treatment errors.


I often see on here, people who have been badly let down in their care. I see blatant breaches of care, creating the likelihood of much worse outcomes. People should be made accountable for making these mistakes but they're not.

Edited by member 17 Feb 2024 at 12:39  | Reason: Spelling.

User
Posted 17 Feb 2024 at 12:21

Originally Posted by: Online Community Member
Hi Lyn


Read your bio. Every man on here needs someone like you on their cancer journey. Im lucky mine is a nurse of 35 years standing. Thanks for watching us.


Join the end of the queue, it's 3 miles down the road. 🙂


 

Edited by member 17 Feb 2024 at 12:31  | Reason: smiley face

User
Posted 17 Feb 2024 at 20:09

Haha I can believe its at least that Lyn!

User
Posted 17 Feb 2024 at 21:42
I am not generally known for my niceness - in my professional field, it has been said that if I appear at your door you may as well clear your desk :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 17 Feb 2024 at 22:06

Originally Posted by: Online Community Member
I am not generally known for my niceness - in my professional field, it has been said that if I appear at your door you may as well clear your desk :-/


Are you a bailiff? 😁

Edited by member 18 Feb 2024 at 07:32  | Reason: Typo

User
Posted 18 Feb 2024 at 01:47

As this thread has got off topic, I will relate a situation which does not concern PCa but does say something about the way patients can be treated within the NHS and some consultants.


Whilst living in Surrey, I was diagnosed with Glaucoma and was fortunate to be monitored within the NHS by what people generally regard as the foremost UK eye hospital in London. When I moved to Devon, I transferred to my local hospital where they tried 3 times to dilate my eyes at my appointment and three times later in the week without success. I will also say that a local branch of a High Street group of opticians have also had the same result. I therefore decided to transfer to another more specialized Hospital in Devon who were able to dilate my eyes and regularly monitor me and change drops. This went well until covid and I had a delayed appointment in May of last year wherein my eyedrops were changed and I was told that I should see a Surgeon in 3 months about treating my cataracts. being aware that appointments for Surgery were delayed, I left it for 6 months before enquiring when I would get my appointment. I was told that they were working through the lists but there was still some waiting time. I was given an appointment last week but decided to ring them to confirm I would be seeing a Surgeon rather than just having the usual checks but said I would not be seeing a Surgeon. I said this was well overdue and that I wanted to see a Surgeon. They rang me back to say they had had a cancellation and that I could see the Surgeon if I took an early appointment the next day.


So, I arrived in good time and had all the usual tests and then saw the Consultant who proceeded to repeat a test done a few minutes earlier by somebody else and then said he would insert a replacement mono lens in each eye and which eye would I like done first? He also said the first eye could be done in about two months. Having read up about possible treatments, I wanted to ask whether I might be a candidate for the 'accommodating or multifocal lenses' approved by NICE but only available privately, or one of the combined treatments available for cataracts and Glaucoma, could an operation for Glaucoma be done after a lense for cataract had been done. But much to my surprise, the Consultant just walked out the door repeating as he left the room that I was just having a mono lense inserted in each eye for cataracts and and would need glasses for reading. I didn't even get the chance to ask if I was likely to continue to need drops. So I estimate that the consultation lasted about a couple of minutes. An assistant then handed me a copy of a leaflet that didn't answer my questions and saw me out!


In view of this very unsatisfactory appointment, I intend to get a private appointment with the aforementioned Hospital in London. It may be that what I have been offered is best in my case or it could be another option is possible if I go private. At least by paying for a consultation I will know what I might be missing out on. I know all Consultants are very busy but avoiding my questions and walking out on me in that fashion is not satisfactory.

Edited by member 18 Feb 2024 at 13:03  | Reason: Not specified

Barry
User
Posted 19 Feb 2024 at 10:35

Hi Adrian


sorry to hear your story and the brick walls you have faced. Contrary to Lyns assumption I am not in the least angry. My profession involves deep research so Im happy to follow the bread crumbs and see where they lead, very much with the 700 or so other men who were sold a treatment which NICE rightly described as lacking efficacy and which, as I have revealed in research, can cause the growth of more aggressive cancers within the prostate. I take note the ancient Chinese writer Tzu Sun, when you act in revenge, first dig two graves. If I can get some compensation for my damaged health, assuming it is found I deserve it, all well and good. And Im in no hurry to collect the breadcrumbs, but collect them I will.


I do agree with you, just looking backwards at events, trusting and taking what some NHS consultants dish out is grossly unfair if they are at fault.


But important to focus on getting better first and not let those mistakes or misconduct mess up your life going forwards.


 


 

Edited by member 19 Feb 2024 at 11:08  | Reason: Not specified

User
Posted 19 Feb 2024 at 11:27

Originally Posted by: Online Community Member
sorry to hear your story and the brick walls you have faced.


Thank you Paul for your kind words and sound advice.


I'm sorry that I strayed from your HIFU thread, but, although ours are very different scenarios, I felt that we shared very similar frustrations. 


My PC bookmarks, is full of NICE guidelines and research which clearly cast doubt on the treatment plan I was advised to take. However, as previously, stated it's virtually impossible to prove that the mistakes made had left me with much less favourable outcomes.


During recovery, I spent hundreds of hours, trying to make my case. Was it a waste of time? Not really, it gave me something to focus on, and took my mind off the treatment side effects. I am very tenacious and hate injustice. At least the research I did, put my mind at rest, that I'd done my best to fight back.


All the best mate.


   

Edited by member 19 Feb 2024 at 11:36  | Reason: Typo

User
Posted 24 Apr 2024 at 13:08

I have had some criticism on here from members and even intervention from the Moderators.  All I have sought to do is to inform men facing prostate cancer of the truth about HIFU as a treatment.


To recap, a top consultant at a major London Cancer Hospital effectively promoted HIFU to me and my GP as follows (I quote verbatim):


"In terms of oncological success over a 5-10 year period, 85% of patients will just need one treatment, 10% of patients will need a second treatment and 5% of patients will need some other form of treatment; either in the form of surgery or radiotherapy, should the policy of tissue preservation fail to control the disease."


I have now have received under FOI a response from the same major London Cancer Centre to my request for data which discusses the ERUS presentation written by another a surgeon at the same hospital.  The ERUS presentation has been previously posted by me and others but here is the link again:


https://www.urotoday.com/conference-highlights/eau-robotic-urology-section/erus-2018/106785-erus-2018-a-pathological-landscape-of-recurrence-after-focal-hifu-forprostate-cancer-a-high-rate-of-adverse-findings-at-salvage-prostatectomy-and-limitedsensitivity-of-mri.html


So within the FOI response I received is the following statement:


"Results


Prior to HIFU, 55.9% had multifocal disease and 47.1% had Gleason 3+3 outside the treatment field. Median time to failure was 16 months (IQR 11-26). Indications for sRARP [salvage prostatectomy] were IFR [in-field recurrence] 55.8%, OFD [out-field detection] 20.6%, or both 23.5%.


On sRARP histopathology, significant cancer (ISUP>or=2) was present in 99.1% / 81.3% / 79.4% in-field, outfield and both respectively. 82.4% were adversely reclassified at " [text cut off]


Id be happy to supply copies of this FOI response to the Moderator if they're interested as the FOI is not as far as I can see online.  


When I discovered my cancer had reached the danger zone of Gleason 4 I was naturally psychologically vulnerable to 'a promise from heaven' like HIFU. But this research suggests HIFU is more like a game of whack-a-mole. You treat one lesion and another jumps into Gleason 4, either in or out-field or (as in my case) bilaterally.  Then upon HIFU failure ,without warning, I was told the NHS will not undertake a nerve-spare prostatectomy.  I was pushed towards radiotherapy or going private for an intra-operative nerve-spare prostatectomy to have any hope of saving erectile function.


 

 
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