HIFU- Treatment or a Cancer risk?

User

Posted 04 Sep 2023 at 16:21

I am an active professional 70 year old and was recommended for partial ablation HIFU treatment at UCLH in Feb.22 following escalation AS under G3+3 to more aggressive 3+4 but still contained within the gland (T2c).

At the time the UCLH consultant said the procedure is well tolerated with a failure rate of 15% but further HIFU treatment could be undertaken if required. By Autumn 2022 the PSA was rising faster than it should following HIFU and whole gland treatment was recommended, either RT or sRALP (salvage robotic-assisted radical prostatectomy) as the cancer had not only progressed but was now bilateral (on both sides). I initially favoured surgery but was told to my shock that because I had the HIFU treatment they would need to remove all my nerves which were now 'tethered' to the gland by the HIFU treatment on the left side. The right side had cancer but they said those nerves would have to go as well as part of the surgery they call salvage Prostatectomy. This would remove all my erectile function. I was not informed of this before I agreed to HIFU as recommended by NICE guidance 2005 which states"the man understands what is involved, and that its not clear how the procedure affects mens's day-to-day lives or how long the effects last".

I dug a little and was appalled to learn that this is a novel procedure adopted in the UK but banned in the US and Europe outside clinical trials. (BJUI Journal 2023,131:20-31 dol: 10.1111/bju.15883 states "The literature suggests that the oncological effectiveness of FT (focal treatment) remains unproven due to lack of reliable comparative data etc."

Suny Medical University Hospital, New York states the actual effect on the anatomy of HIFU cannot be predicted" and "the failure rate of partial gland ablation ranges between 35% and 42% with approximately 14% in-field recurrence." (Journal European Urology Focus 8 (2022) 1192-1197). More worrying still, a study by UCLH themselves with Guys,Kings and Imperial states "Specifically, we identified that men experiencing an infield recurrence [like me] had almost four times the risk of developing biochemical failure after sRALP, 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 ...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...."

(European Urology 76 (2019) 27-30)

So not only is the effect of HIFU on the human anatomy unknown and the procedure not approved in US and EU, here there is a suggestion by UCLH themselves that zapping the prostate gland with high frequency energy which, it is well understood causes fibrosis with consequent reduced blood flow, could be encouraging more aggressive cancer cells to repopulate less aggressive cancer cells killed by the HIFU treatment!!

I am totally appalled. HIFU is a dangerous toy which should not be approved outside clinical trials by NICE.

I was not offered nerve spare sRARP by UCLH which they said they discontinued after a trial in 2018. So I have had to go private at have had a successful 100% nerve spare sRARP at Guys at a considerable cost (c£22k). I await the post op histology but its looking good so far.

I would have and would now urge anyone considering HIFU to go straight to surgery.

User

Posted 04 Sep 2023 at 16:21

(European Urology 76 (2019) 27-30)

I am totally appalled. HIFU is a dangerous toy which should not be approved outside clinical trials by NICE.

I would have and would now urge anyone considering HIFU to go straight to surgery.

User

Posted 05 Sep 2023 at 02:45

Paulshere, Commiserations on the situation you found yourself in following HIFU and I hope the salvage operation by Guys provides a good long term outcome. (So it looks like it is possible to deal with the nerve complication notwithstanding what UCLH said). I would agree that men are not always told all the potential downsides of a procedure, for example it is clear from members experience on this forum that many men were unaware that with a Prostatectomy they might lose some length on their penis. In my opinion, a more in depth publication should be given to men detailing treatments, implications, and ramifications as I don't think Consultants have the time to cover every eventuality with all patients.

Naturally, you are upset that HIFU didn't work for you but the same applies to Prostatectomy where men are sometimes left up to permanently incontinent in some cases or have varying degrees of ED, Furthermore, many go on to need salvage RT. Radiation also has it's failures as in my case but thankfully two sessions of HIFU put me into remission.

You are wrong about HIFU not being approved by the FDA. It was approved there. in 2015. "UCLA Expertise in HIFU Treatment
UCLA Urologists, Drs. Leonard Marks and Allan Pantuck, were the study investigators for the first U.S.-based HIFU clinical trails that began in March 2009. UCLA became the lead enroller nationwide for that study. The results of that study were submitted to a Food and Drug Administration (FDA) panel in 2014 and in late 2015 the FDA approved the first ultrasound system for the ablation of prostate tissue in the United States". It was also done in European countries as well as further afield. As to your somewhat speculative statement that by ablating cancer cells, HIFU might encourage the formation of more virulent cancer cells, a leading doctor has said the same about RT on relatively radio resistant cancer cells or those missed or received insufficient dose. HIFU, like Prostatectomy .and RT of various types has its failures and successes and its uptake is increasing and improving. It is quite absurd to say it is a toy as 10+ year retrospective studies are showing. In return for slightly less overall success and uncertain very long term outcomes, you get an easy procedure with generally milder side effects than with Prostatectomy or Radiation. .

Edited by member 05 Sep 2023 at 02:49 | Reason: Not specified

Barry

User

Posted 13 Sep 2023 at 18:03

I think there's a common issue here with all treatments. I've never heard of a surgeon mentioning prior to a prostatectomy that 30% of prostatectomy patients will need further treatment to control their cancer, or oncologists saying the same for radiotherapy. I did explicitly ask and was given answers, but most patients don't do that.

There is also clearly an issue with salvage treatments not being discussed before choice of primary treatment. I had a long chat with a patient who's had a successful (so far) HIFU at UCLH, but was nevertheless concerned to only learn afterwards that any salvage treatment was likely to leave him with a worse QoL than if he'd gone for that treatment in the first place.

There also seems to be a very large discrepancy between the success rates quoted by the HIFU practitioners and those who have to do the salvage procedures.

Edited by member 13 Sep 2023 at 18:04 | Reason: Not specified

User

Posted 04 Sep 2023 at 20:31

Very good post and well researched. RT and RP failure rates are about 30% . HIFU 35% to 42% I think most people who are offered HIFU are made aware it may need repeating, though in your case repeating is presumably ruled out. The trade off is much reduced side effects of it works. Interesting that UK is one of the few countries doing HIFU, and indeed it is only UCLH that I have heard of who do it.

"I would have and would now urge anyone considering HIFU to go straight to surgery." Why do you rule out RT as a primary treatment or for that matter as a salvage treatment in your case?

Dave

User

Posted 04 Sep 2023 at 22:23

In my experience it’s not the RT you have to worry about, but the HT that May accompany it.

User

Posted 05 Sep 2023 at 19:18

I've had this 'easy procedure with generally milder side effects'.

As a side effect, weeks afterwards, my prostate became sufficiently inflamed to cause urine retention, severe enough to need emergency recatherisation in A&E.

I've subsequently been told (by an acquaintance who used to work in urology) that retention tends to be associated with HIFU, rather as incontinence is associated with prostatectomy.

I wasn't warned of this in advance. The warnings about HIFU I was given were basically the same as the warnings about RP (incontinence, ED, etc) but toned down.

Having said that: I'm OK now and I won't regret having had HIFU (instead of either RP or RT/HT) provided it works. I don't know yet if it's worked. I'm assured that the post-HIFU MRI shows 'good coverage' of the cancer site within the relevant side lobe (4 cores out of 30 at biopsy, Gleason 4+3). PSA outlook is not yet clear as it appears to have been raised by the same inflammation that caused retention. But provided I don't develop a new cancer in the other side lobe, I assume I should be OK, as I don't see how the original cancer can have survived being boiled to a mush.

Is that overoptimistic on my part?

User

Posted 05 Sep 2023 at 19:59

Interesting info, thanks chaps!
I selected HIFU at UCLH after my cancer returned 4 years after my Cryotherapy. It did nothing to reduce it, indeed the impression I got was it might have made it worse! The (well-known professor chap) at UCLH said: "You're making new cancers."
So, I selected a Radical in 2020 (just before lockdown). PSA now been undetectable since then.
See my profile web blog link for latest updates on my journey. - https://andrewhamm.co.uk/prostate/blogdetails.htm

Edited by member 05 Sep 2023 at 20:09 | Reason: Thought of more info & added blog link

______Grateful for the goodness of God________

User

Posted 11 Sep 2023 at 12:20

Thanks for interest Chaps

Hello Old Barry -concerning "You are wrong about HIFU not being approved by the FDA. It was approved there. in 2015. "UCLA Expertise in HIFU Treatment UCLA Urologists, Drs. Leonard Marks and Allan Pantuck, were the study investigators for the first U.S.-based HIFU clinical trails that began in March 2009. UCLA became the lead enroller nationwide for that study. The results of that study were submitted to a Food and Drug Administration (FDA) panel in 2014 and in late 2015 the FDA approved the first ultrasound system for the ablation of prostate tissue in the United States".

Im not a scientist of a medic just a bloke trying to navigate a safe exit from prostate cancer and not accepting anyones' advice at face value, but my understanding is HIFU is only approved in the US and EU in clinical trials (BJUI journal 2023 previously referred in my post) This Australian systemic review of all guidance on HIFU and concludes it should only be used in clinical trials.

Also, this community may be interested in a recent smaller German Study "Single-centre, prospective phase 2 trial of HIFU in patients with unilateral localized prostate cancer: good functional results but oncologically not as safe as expected" which concludes "....However, HIFU was not as safe oncologically as expected, with recurrence and progression rates of 37.93% and risk of disease progression to metastatic disease. We strongly support the further scientific evaluation of FT (focal treatment), but until oncological risks cannot be safely reduced, we no longer recommend HIFU treatment in our department at this time" World Journal of Urology (2023) 41:1293-1299.

Albeit this study with only 29 men between 2016 and 2021, again underlines the unknown effect on the anatomy referred to by Suny Med Hosp. NY Study findings "Actual effect on anatomy of HIFU cannot be predicted"

37.93 progression. Those odds are rubbish

I asked the clinical nurse specialist post-op at Guys why they continue with HIFU at UCLH. She said "we have been wondering that"

Me too

Edited by member 11 Sep 2023 at 12:30 | Reason: Follow tick

User

Posted 12 Sep 2023 at 04:26

Hi Paul,

I have no medical qualifications other than being a certificated first aider and that is not really relevant here. Like the majority of people on this forum when I was diagnosed, (in 2007 in my case), I knew virtually nothing about PCa or treatments for it, so started intense research on the subject and treatments that were available worldwide, reading published papers, listening to talks/lectures and tracking down an expert on Radiation whose published papers I found interesting because the Prostatectomy route was not recommended in my case. The professor kindly gave up his lunch hour to unofficially fit me into his patient schedule and became my second opinion. I have also read many cases of men that have been on this forum, and occasionally a US forum and an Australian one. We can all learn something from each other. I have also referred back on occasion to 4 of the 5 hospitals I have been involved with on my cancer journey. The Royal Marsden kindly said in one of their letters to me that I was well informed and at my GP's request I have given a talk to students on the combined EBRT with Carbon Ion boost I had in Germany and HIFU in London. I do try to keep up with changes and progress but there are areas where my knowledge is very thin and I tend to leave those aspects to those members who are better informed.

It's easy to make a case for and against any treatment option open to a patient and I have never suggested one over others, only that patients are made aware of what is out there because this is not always the case. Indeed, there are sometimes good reasons why a particular type of treatment is better/preferred or less suitable for an individual.

Regarding your feelings about men having experimental treatment, that is ok if they know what they are letting themselves in for. It is the way alternative treatments and refinements are developed. Some years ago there was widespread concern about receiving radiation. That's what people continued to die from in Japan even long after the atomic bombs there so understandable. Over time, precision, intensity, dosage and frequency has improved outcomes so radiation damage is now vastly reduced but was once a major concern. Even now there is a small risk of initiating another cancer years on. Take a look at at this video on the RAGE website which was started by women damaged by radiation for breast cancer who didn't know the risks they were taking in having radiation, the point you make about men being unaware about some of the lesser risk with HIFU. https://www.rageuk.org/home

Edited by member 12 Sep 2023 at 05:11 | Reason: to highlight link

Barry

User

Posted 14 Sep 2023 at 20:13

Hmmmm,

I think it might carry more weight if this Charity started a campaign for men to be informed about all possible implicaations of cancer treatments as becomes known before having patients make their decision. But this does not only apply to cancer treatment but from instances of which I am aware, or have experienced, is quite endemic in the NHS at least. A lady I knew many years ago wrote an award winning book about her bad cancer experience and has since fought for changes, with mixed success.

The book is titled 'Nothing Personal - Disturbing Currents in Cancer Care.' The Foreword is by the well known Professor Karol Sikora and the author Mitzi Blennerhassett - well worth a read, even some more patient orientated doctors have said so. Sometimes a copy can be purchased on eBay

The foregoing apart, as with other forms of treatment, HIFU is subject to refinement and those involved in it take their work very seriously at UCLH, also investigating and organising trials for other forms of Focal treatment such Nanoknife (Irreversible Electroporation). This makes it the UK's leading centre for Focal Treatment providing alternative treatments with different risks, so certainly cannot be said to be a toy any more than would apply to RT because Prostatectomy is not easy after it with few surgeons willing to do it and with a high risk of permanent incontinence.

Barry

User

Posted 15 Sep 2023 at 11:20

Hello Barry

Yes a very good suggestion for PC UK to run a small campaign on our behalf. Thank you for it.

This advice from Prof.E to my GP is deliberately glossing over the drawbacks of HIFU PA and ignoring the implications of failure in further salvage Prostatectomy. I quote from the letter;

"It is a very well tolerated procedure... In terms of oncological success over a 5 to 10 year period, 85% of patients will just need one treatment..." From below studies 85% is wildly inaccurate.

As previously quoted "..progression rates of [Cancer] 37.93% and risk of progression towards metastatic disease." German study (2023) https://doi.org/10.1007/s00345-023-04352-9

Editors comments in Study by UCLH https://doi.org/10.1097/JU.0000000000000135 Journal of Urology, Vol.201,1134-1143, June 2019"Thompson et al present the largest series of patients treated with salvage radical prostatectomy after prior HIFU. The study was not designed to assess the risk of recurrence after HIFU. Nevertheless, the authors suggest a relatively high infield recurrence rate of 97.1% at salvage surgery after HIFU. It clearly demonstrates that focal ablation with HIFU carries a risk of incompletely ablating the primary tumor. To our knowledge the exact recurrence rates after focal ablation with HIFU are unknown. Recently Guillaumier et al estimated a 37% 5-year recurrence rate"

So the recurrence rate looks more 37% not 15%. That is a critical difference which would have changed my mind away from HIFU.

I certainly don't comment of serious cancer research at UCLH but the above quotes and others in my earlier posts demonstrate the need for patients to get the true facts and risks to allow informed choice. HIFU is certainly not a toy, but if some surgeons misrepresent its performance they are in danger of treating it as one!

I wish you, and all others in this community-all the best on your and their journeys.

User

Posted 16 Sep 2023 at 19:05

Thanks everyone for this discussion, which I have found very interesting. I'm hoping for the best possible outcomes for everyone involved.

I think about HIFU a lot, because I often wonder whether I should have had it for my small 3+4 organ contained cancer (with relatively low PSA), which was diagnosed last year when I was 47. The HIFU guy was the first of the specialists that I spoke to at UCLH, followed by surgery and radio-oncology. He was so negative about it that I just ruled it out. It never occurred to me to get a second opinion, and I still think about that a lot. Knowing what I know now, I think I would definitely want to at least to talk to someone else. This specialist was not the eminent Prof E, referred to above, but somebody who works in his team. He told me (according to my notes, which might not be fully accurate): the treatment is ultrasound at a heat of 90C; there is very low risk of leaking urine afterwards; 1 in 3 men might need tablets to help with erections; 10% have longer term problems; 50% won't ejaculate afterwards. All of which sounds pretty positive compared to other treatments. Then he said: it's not yet a standard treatment and they only have short term results; 1 in 5 men will get the cancer back within 5 or 6 years; once they have ten years of follow up, that number will be higher; if the cancer came back, the prostate would have to be removed and, due to the heating, fusion, etc., that would be unlikely to be nerve-sparing, resulting in an 80-90% risk of permanent ED. The position of my cancer, near the apex, made is harder but not impossible to treat ( I have a vague memory that he might have said that they would probably destroy a nerve bundle, but it's not in my notes, so not sure). He also said that he thought that if I had HIFU, the cancer would come back. Faced with that opinion, and with the knowledge that this would likely lead to a non-nerve sparing RP, I ruled HIFU out. He clearly thought I should have surgery.

The reason why I think back to this a lot is because some if it seems to conflict with other info I have now seen. Isn't it the case that they already have 10 years of follow up data? Some data that I saw in a talk by professor E suggested that men who have sRP after HIFU actually do relatively well with erectile function — about the same as those who just have primary RP. Couldn't it be the case that a return of the cancer might just have meant another dose of HIFU and not RP? How could he really know that it was likely that my cancer would return after HIFU? When he told me about the rate of recurrence, I never thought to ask how that compares to RP. Etc...

All of which is to say that it seems that what is needed is a lot more info. My feeling is that HIFU or something like it has to be a significant part of the future, as removing whole prostates is a pretty major thing to do with some very big impacts. But at the moment, it's very difficult to get a clear sense of the trade-offs in terms of quality of life and survival. As it is, I still go round and round, wondering whether I could have avoided the effects of RP.

User

Posted 18 Sep 2023 at 11:13

hello Londoner74

Although you have concerns about advice you had which you have recorded so well and recount here, I think the advice was spot on. HIFU Partial Ablation (PA) sizzles a small area of the prostate. Studies Ive referred to above all show a fairly high probability of recurrence in the ablated zone, some 37%. My own HIFU in Feb 22 failed within a year and the cancer had developed in the other lobe (bilateral G 3+4).

You were correctly advised salvage prostatectomy after HIFU at UCLH would involve a 'non-nerve spare operation' . ie total loss of erectile function. However, nerve spare prostatectomy is available in the private sector, such as Guys/London Hospital where I was treated a few weeks ago. The surgeon undertakes an 'intra-operational frozen section nerve spare prostatectomy'. While your asleep they removed my prostate, froze it and undertook histology to ascertain the extent of cancer near the surface of the prostate capsule. If its very near the surface anywhere (known as a positive surgical margin) they only remove the small part of the nerve bundle adjoining the cancer. This approach means men can retain their erectile function in most cases. In my case they retained 100% of the nerves despite the fusion of the nerves and rectum wall to the prostate gland caused by having the HIFU treatment.

Why the NHS at the UK's biggest cancer treatment centre, UCLH don't offer this treatment is a good question. I think it dates back to two studies led by the team at UCLH.

Worryingly in the first study of 82 men published in March 2019 https://doi.org/10.1016/j.eururo.2019.03.007 by UCLH with Guys, Kings and Imperial they conclude "Specifically, we identified that men experiencing an infield recurrence (cancer returning within the HIFU treated field) had almost four times the risk of developing biochemical failure (cancer spread outside the prostate) after S-RALP (salvage Prostatectomy) 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 multimodel (whole gland treatment) therapy....One hypothesis for this finding is that an initial incomplete ablation might result in the development of "ablation resistant" (cancer) clones that repopulate the ablation field and metastasise locoregionally. The biological mechanism of this phenomenon is yet to be described and further research..." etc..

In plain language this means that the effect of HIFU somehow causing more aggressive cancer cells to re-populate but they don't know why. Stopping all HIFU treatment would have been the right thing to do in 2019 just as they did at the University Medical Centre Johannes-Gutenberg in Germany earlier this year-see link in my previous post. But that might expose the NHS to legal claims and damaged reputations. I can speculate the reason they rip out all the nerves at salvage prostatectomy is to 'play safe' reducing the chance of spread of cancer cells following HIFU PA.

The second Study of 35 men by UCLH with Barts, Q.Mary and Uni Oxford published in June 2019 https://doi.org/10.1097/JU.0000000000000135. concluded that after salvage prostatectomy following HIFU PA 'significant cancer was found bilaterally in 80% in (the treated field) and outside the intent to treat field in 71.4%.... However, in 45.7% of the patients bilateral ISUP 2-5 (Gleason Grade 2-5) was not detected before RP " (radical prostatectomy). This confirms UCLH knew the damage HIFU causes and the high probability of more aggressive cancer returning and spreading as long ago as 2019.

Id be interested in the initials (as we cant name anyone under the rules here) of the honest surgeon who gave you correct guidance about cancer returning following HIFU PA.

I do hope you have a good outcome following RT and my best wishes to you for the future.

Edited by member 18 Sep 2023 at 11:31 | Reason: Not specified

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User

Posted 04 Sep 2023 at 20:31

"I would have and would now urge anyone considering HIFU to go straight to surgery." Why do you rule out RT as a primary treatment or for that matter as a salvage treatment in your case?

Dave

User

Posted 04 Sep 2023 at 21:28

Hi Dave

RT not for me. I value my character and fitness as it is as i run a business and am a regular at the gymn. RT is a bit of a sledge hammer ill keep in reserve

User

Posted 04 Sep 2023 at 22:23

In my experience it’s not the RT you have to worry about, but the HT that May accompany it.

User

Posted 05 Sep 2023 at 02:45

Edited by member 05 Sep 2023 at 02:49 | Reason: Not specified

Barry

User

Posted 05 Sep 2023 at 19:18

I've had this 'easy procedure with generally milder side effects'.

As a side effect, weeks afterwards, my prostate became sufficiently inflamed to cause urine retention, severe enough to need emergency recatherisation in A&E.

I've subsequently been told (by an acquaintance who used to work in urology) that retention tends to be associated with HIFU, rather as incontinence is associated with prostatectomy.

I wasn't warned of this in advance. The warnings about HIFU I was given were basically the same as the warnings about RP (incontinence, ED, etc) but toned down.

Is that overoptimistic on my part?

User

Posted 05 Sep 2023 at 19:59

Edited by member 05 Sep 2023 at 20:09 | Reason: Thought of more info & added blog link

______Grateful for the goodness of God________

User

Posted 05 Sep 2023 at 23:44

Hi Andy, good to know your Prostatectomy seems to have worked. I first came upon your very detailed story several years ago and see you post occasionally. Some video links you show are now quite old but anybody interested in focal therapy should find them interesting as indeed your story is.

Edited by member 11 Sep 2023 at 17:19 | Reason: spelling

Barry

User

Posted 06 Sep 2023 at 08:42

Originally Posted by: Online Community Member

I would have and would now urge anyone considering HIFU to go straight to surgery.

Thanks Paul for your in-depth analysis. I was also caught in between HIFU and surgery. In the end I went for the surgery option - however, I have always wondered if I made the right call. Sorry to hear about your travails with the HIFU treatment.

User

Posted 11 Sep 2023 at 12:20

Thanks for interest Chaps

37.93 progression. Those odds are rubbish

I asked the clinical nurse specialist post-op at Guys why they continue with HIFU at UCLH. She said "we have been wondering that"

Me too

Edited by member 11 Sep 2023 at 12:30 | Reason: Follow tick

User

Posted 11 Sep 2023 at 12:33

Good call Andy well done

User

Posted 11 Sep 2023 at 19:16

Hi Paul,

I can understand why following your experience with HIFU you are set against it. (We had a similar situation with a member (I think his forum name was Capelman or similar. He had a Prostatectomy by one of the top listed surgeons in the UK as established by Daily Mail survey of surgeons but was left permanently incontinent so was very unhappy with his treatment).

However, apart from the Sonablate system being approved by the FDA in 2015 it was followed by the French Ablatherm which gained full FDA approval shortly after as linked to here https://www.healio.com/news/hematology-oncology/20151203/fda-approves-ablatherm-hifu-treatment-for-prostate-cancer

In fact HIFU is done in over 50 countries, the most centres I can find recorded as being in France, 72, Germany 30, USA 21 and Russia 18. The systems used and techniques have improved and continue to do so but as with other forms of treatment there are pros and cons. An example of this is the incidence of Fistulas formed following HIFU which at one time was a matter of concern but the surgeon who did my HIFU had not had one instance in over 900 treatments. Tulsa-Pro seems to be the latest development on the ablation theme but it will be a long time before results can be compared.

You quote a nurse at Guys replying to what looked like a loaded question empathising with you about why 'they' continue with to do HIFU but I suggest you take a look at Guys views on the subject which I think are pretty fair as here - https://www.guysandstthomas.nhs.uk/health-information/hifu-to-treat-prostate-cancer

Quote from above link "The short-term cure rates for HIFU are similar to those reported after surgery and radiotherapy. The rates for surgery and radiotherapy mean 80 to 85 out of 100 patients have not had cancer return after 10 to 15 years, while they were being monitored. We know that the HIFU results are similar to this in the short term. We do not know yet if the HIFU cure rates will stay at this level for 10 to 15 years. This is the subject of further trials.

Finally, I am grateful that HIFU has expanded and that I am told my cancer is gone. The only viable alternative to this would have been HT for the rest of my life which I strongly wished to avoid.

Edited by member 11 Sep 2023 at 19:44 | Reason: to include links

Barry

User

Posted 11 Sep 2023 at 20:15

Hello Barry

im glad you had a good experience. My main point is the risks which are wide ranging were counselled to me prior to HIFU. I was simply told it was a well tolerated procedure with 15% failure rate. No mention was made of fusing of nerves or rectum to the gland multiplying the risk if salvage RARP is the next step.
just a point: medics get things wrong. My balanced view is HIFU has unknown affect on the human anatomy and is therefore practiced, in effect experimentally, in Londo. on cancer patients with unknown outcomes and a failure risk much much higher than 15%.
You seem well informed. Do you have medical expertise?

User

Posted 12 Sep 2023 at 04:26

Hi Paul,

Edited by member 12 Sep 2023 at 05:11 | Reason: to highlight link

Barry

User

Posted 12 Sep 2023 at 09:37

Thank you for your back story Barry. We all swim in the same sea after PCa diagnosis.

My backstory includes a Prostate trial at Queen Mary with UCLH which I volunteered to join to advance treatments to help others. Sadly due to inadequate screening in the design of the study by very very senior prostate surgeons I nearly died. It was only my wife a senior nurse of 35 years experience who applied CPR to save my life as I lay in a pool of blood on the bedroom floor. So forgive me if I have a healthy mistrust of 'top surgeons' who fail to give cancer patients an informed choice about the risks, likelihood and consequences of failure of HIFU.
The same people at UCLH have written papers in which they proclaim the risks and need for counselling:

"...men experiencing an infield recurrence had almost four times the risk of developing biochemical failure (cancer spread around the body) after sRALP (salvage prostatectomy) independent of margin status, Gleason grade group, PSA, or pT stage"....and "should be counselled regarding the potential need for a multimodal therapeutic approach" (ie told that they might need whole gland treatment) (UCLH and others in European Urology 76 (2019) 27-30; and "HIFU PA (partial ablation) carries a risk of recurrence inside and outside the ablation zone. This information may inform salvage surgical planning and patient counselling regarding the choice of initial therapy and salvage treatment after HIFU PA." (UCLH and others The Journal if Urology Vol201, 1134-1143, June 2019"; and "Given the recurrence rates of HIFU PA, (37.9% in the recent German Study) it is important these men (choosing HIFU) are adequately counselled on outcomes of salvage radical therapy should their disease reocur. For a proportion of men choosing this novel therapy, the standard care option of radical prostatectomy may become preferable given the data herein" (ie: you might be better going straight for Prostatectomy)" patients and their clinicians should consider the sub-optimal outcomes of sRARP when making initial and salvage treatment choices"

(UCLH BMC Urology (2020 20.81 http://doi.org/10.1186/s12894-020-00656-9)

NICE advice is incredibly woolly without any specifics and the NICE Committee should hang their heads in shame for effectively endorsing the misinformation of cancer patients. They should spell out a form of words that all patients considering HIFU should sign up to before opting for the "novel' treatment including the world-wide reservations about it.

User

Posted 12 Sep 2023 at 23:42

Thanks for the posts Paul, Barry and Dave.

Jules

User

Posted 13 Sep 2023 at 08:01

Originally Posted by: Online Community Member

Thank you for your back story Barry. We all swim in the same sea after PCa diagnosis.

Paul, thanks once again for sharing your experience and more importantly, for the research you have done. I did wonder if I made the right choice by going down the prostectomy route, my condition was unique in that I had cancer on both sides of my prostate and also had a prostate size 5-6times the size, who knows how it could have ended.

User

Posted 13 Sep 2023 at 08:17

I think i would always cut out the affected tissue so my best wishes to you Gee Baba

User

Posted 13 Sep 2023 at 09:15

Andy

Just checked your interesting journey on the link -many thanks for that. Others may be interested to note a consultation I had with the most senior sRARP surgeon at UCLH contradicts the "millimetre point accuracy" of HIFU referred to in the Nuada Video in your backstorey https://andrewhamm.co.uk/prostate/blogdetails.htm

This surgeon told me he was involved in the development of the predecessor robot to the DeVinci machine in Germany and that he is the most experienced in post-HIFU prostatectomy. Here he is discussing what he finds during sRARP surgery: I quote: (recorded)

"Still the HIFU is not accurate, every time they say its been treated on the left side we can see reaction on the other side also, so the energy seems to spread."

User

Posted 13 Sep 2023 at 14:51

Hi Paul,

I am very sorry you had such a close call and how fortunate your wife was able to come to your aid.

As regards the mention of pin point accuracy of HIFU you allude to, I think they mean it is essential that to be effective the energy has to be very precisely concentrated on the tumour. This should not be taken to mean that no collateral damage will be done outside the target area. Originally, I was told by Professer E that one of the reasons why they did not want to do a second HIFU in my case was because the tumour was close to my rectum which could damage it. (I was subsequently surprised when a lady Professor colleage agreed to do it, perhaps due to my refusing the proffered HT alternative). I think this is true of other focal abation treatments to some extent and of course with Radiotherapy, where some damage is sustained along the path of the beam. So it's not surprising the surgeon mentioned this in your conversation.

Barry

User

Posted 13 Sep 2023 at 15:21

Hi Barry

yes i was indeed a very lucky man when i met my wife!

yes there is collateral tissue damage with HIFU like fusing of nerves and rectum onto prostate gland. And it is that damage which makes salvage surgery afterwards more challenging.
Again, these points need to be explained prior to HIFU along with the high failure rate, and upstaging of cancer grade in post op histology.

would that be prof E operating guildford and guys?

User

Posted 13 Sep 2023 at 18:03

There also seems to be a very large discrepancy between the success rates quoted by the HIFU practitioners and those who have to do the salvage procedures.

Edited by member 13 Sep 2023 at 18:04 | Reason: Not specified

User

Posted 13 Sep 2023 at 19:01

Agreed Andy and thats simply unhelpful to us poor folk having to choose on dodgy advice. And against advice from NICE

User

Posted 13 Sep 2023 at 23:33

Paul and Andy,

Yes, patients should indeed be informed at the outset of downsides of treatment just like when you are prescribed medicine there is an accompanying leaflet that shows the incidence of various actual and potential side effects. I was warned about possible damage to my rectum during an appointment with Professor E and that was one of the reasons he declined to do any further treatment on my Prostate, the other reasons being that it had suffered attack from two previous procedures, namely RT and a previous HIFU and that there was some calcification present. I was considering going to the USA to have in bore Focal Laser Ablation (FLA) but decided against that for personal reasons and because it didn't work for somebody I knew of. I was aware that the lady Professor who did my first HIFU at UCLH was Chief Investigator for a trial as here https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-looking-at-a-new-way-of-giving-photodynamic-therapy-for-prostate-cancer-spectracure-p18I asked whether I could be considered for this. She rang me saying because of my previous treatment I was not eligible. However, she mentioned that subject to my having another MRI and meeting mainly preop requirement she would in fact do a second HIFU procedure bearing in mind potential downsides which she reiterated as she sat at the end of my bed completing a form immediately prior to the procedure. I must say how taken back I was that having been refused the op by Professor E she volunteered to repeat it, although I carefully avoided mentioning Professor E's prior refusal. So there can obviously be differences of opinion between 'experts'. At one of my follow up appointments Professor E sounded very pleased when he told me my MRI was clear and I could consider myself in remission. The wry smile on my face was because I wondered whether he recalled how he had previously refused me the second HIFU. Of course, had I suffered rectum damage, he would have been able to say he had warned me off the repeat procedure.

Reverting to the aspect of patients suffering damage from treatment about which they had not been made previously aware of the risks, I am surprised that nobody has commentated on the link I gave about 'RAGE' in a previous reply, albeit this was in respect of Breast Cancer.

I don't know if Professor E (who appears in member andyprostate links practices in Guildford as he has plenty of work in London although he may have tutored there. He is widely regarded as the top Focal expert in the UK and possibly further afield. (Sorry it is a rule on this forum that we can't name clinicians)

I came to have HIFU as a salvage treatment, so a very different situation from those contemplating it as a primary treatment.

Edited by member 13 Sep 2023 at 23:40 | Reason: to highlight link

Barry

User

Posted 14 Sep 2023 at 08:00

So Barry your prof E was the one who didnt advise me of sRARP risks prior to HIFU.

If its he is UCLH lead in HIFU he should be more careful and explain the risks to patients of failure and salvage surgery complications. Why dont we, Andy, Barry and Paul suggest we give the UCLH prostate team a safety talk. Thats why I described it as a Toy Barry...but with a tinge of truth too

User

Posted 14 Sep 2023 at 20:13

Hmmmm,

Barry

User

Posted 15 Sep 2023 at 11:20

Hello Barry

Yes a very good suggestion for PC UK to run a small campaign on our behalf. Thank you for it.

This advice from Prof.E to my GP is deliberately glossing over the drawbacks of HIFU PA and ignoring the implications of failure in further salvage Prostatectomy. I quote from the letter;

"It is a very well tolerated procedure... In terms of oncological success over a 5 to 10 year period, 85% of patients will just need one treatment..." From below studies 85% is wildly inaccurate.

As previously quoted "..progression rates of [Cancer] 37.93% and risk of progression towards metastatic disease." German study (2023) https://doi.org/10.1007/s00345-023-04352-9

So the recurrence rate looks more 37% not 15%. That is a critical difference which would have changed my mind away from HIFU.

I wish you, and all others in this community-all the best on your and their journeys.

User

Posted 16 Sep 2023 at 19:05

Thanks everyone for this discussion, which I have found very interesting. I'm hoping for the best possible outcomes for everyone involved.

User

Posted 18 Sep 2023 at 11:13

hello Londoner74

Why the NHS at the UK's biggest cancer treatment centre, UCLH don't offer this treatment is a good question. I think it dates back to two studies led by the team at UCLH.

Id be interested in the initials (as we cant name anyone under the rules here) of the honest surgeon who gave you correct guidance about cancer returning following HIFU PA.

I do hope you have a good outcome following RT and my best wishes to you for the future.

Edited by member 18 Sep 2023 at 11:31 | Reason: Not specified

User

Posted 18 Sep 2023 at 19:15

Hi Paul,

I found your post very interesting but not entirely surprising.

Firstly, I revert to the remark you reported earlier in this thread when you said a specialist clinical nurse at Guys told you that she didn't know why they continued with HIFU at UCLH. I must say this is a bit rich when Guys still administer HIFU privately and on the NHS themselves, as I confirmed with them by phone today, and their results closely match those reported by UCLH. Incidentally, I can't see in the information they gave on the subject of HIFU specific reference to the problem you had. So perhaps prior warnings of all potential problems should be made by Guys and any others that do not convey this.

As to your own situation, if you have not yet done so, you could write to UCLH expressing your annoyance that you were not forewarned of the situation that happened in your case and furthermore that contrary to what they told you, a successful Prostatectomy with minimal side effects was possible and done at Guys, albeit at your expense and ask for their response.

As regards a HIFU procedure resulting in some of the treated or partially treated cells living on after the treatment, the same can apply with RT where remaining cells gather additional heterogeneity and radio resistance and if not treated another way can establish another cancer(s). You may find this talk by Dr Eugene Kwon of Mayo Clinic interesting. It is really about Oligometastases but in it he confesses radiation doesn't always do the job and can fail miserably. He mentions a case where the patient was treated with radiation just like all the others but mets burst forth all over his body. NB, PSMA scan superior to Choline Pet scan he refers to.https://www.google.com/search?q=r+eugene+kwon+on+oligometastasis&sca_esv=566316574&sxsrf=AM9HkKnqot3CSugK9Wvw0g-58Uayu88r5g%3A1695057991331&source=hp&ei=R4gIZd6AEuSNhbIPoOuNEA&iflsig=AO6bgOgAAAAAZQiWV-V96v-6kqeUhNNg7YyovQ51ppm3&oq=r+Eugene+Kwon+on+oligometa&gs_lp=Egdnd3Mtd2l6IhpyIEV1Z2VuZSBLd29uIG9uIG9saWdvbWV0YSoCCAAyBxAhGKABGAoyBxAhGKABGAoyBxAhGKABGAoyBxAhGKABGApIjsUCUABYn54CcAB4AJABAJgBkwKgAYkUqgEGMTkuNi4xuAEByAEA-AEBwgILEC4YigUYsQMYgwHCAhEQLhiABBixAxiDARjHARjRA8ICCxAuGIMBGLEDGIAEwgILEAAYgAQYsQMYgwHCAgsQLhiABBixAxiDAcICCxAAGIoFGLEDGIMBwgIFEAAYgATCAggQABiABBixA8ICBRAuGIAEwgIGEAAYFhgewgIIEAAYFhgeGArCAgUQIRigAcICCBAhGBYYHhgdwgIFEAAYogTCAggQABiJBRiiBA&sclient=gws-wiz#fpstate=ive&vld=cid:37974d5f,vid:60P98QLWf70,st:0

Edited by member 18 Sep 2023 at 19:21 | Reason: Not specified

Barry

User

Posted 19 Sep 2023 at 10:29

Hi Barry

As always thanks for this research. What a contrast, the humanity, honesty and cander of Dr Eugene Kwon compared to the lack of it from prof. E.

Yes agreed zapping cancer cells can promote more aggressive disease in siome cases, a process little understood as Kwon says, but he does 'lay it all out' for his patients. Thats all I was deprived of.

I remain firmly of the view that patients considering HIFU would be better to consider nerve spare prostatectomy instead.

Dont know who you spoke to at Guys but the (private) surgeon's secretary I originally spoke to said the majority of their patients were post NHS HIFU PA, requiring whole gland treatment, and wanting their nerves spared if it can be safely done.

User

Posted 19 Sep 2023 at 18:01

...also note. Prof. E. is 'supported' by Sonacare Inc. https://doi.org/10.1111/bju.14710

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