HIFU- cancer treatment or cancer risk -Update

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

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.