HIFU Feedback

Where to start? Everybody is entitled to an opinion but it makes sense to have a more detailed knowledge of HIFU, what it sets out to do and it's appropriate applications before trying to cast aspersions and suggest men have a different treatment, which was one of the suggestions by a poster here and a charge that can be levelled at some urologists and radiologists even.

So let's start with Peter's comment about the largest HIFU study to date and carried out in 6 centres not being peer reviewed. The authors of this study include the most highly regarded and respected focal orientated urologists in the UK and indeed who are known Internationally, so I think the results of the study would not be contested. I am not an expert but first started to look at HIFU in 2007 and have personally discussed aspects of HIFU with 3 of the authors of that study and indeed had my HIFU administered by one of them. This is in addition to watching many lectures on the subject, so my opinion is not superficial. I wouldn't have had HIFU without carefully considering it and I see it is now supported by The Royal Marsden as well as UCLH so that's the UK's top two cancer hospitals.

Of course one has to consider old cases because that's the only way to check how successful treatment has been and is proving because HIFU is a treatment for early and not advanced PCa, Gleason 6 and 7 patients with early staging will be the majority of patients treated. It's only classed as experimental because it lacks long term assessment that only time can provide.

It is acknowledged that many men have radical treatment with associated side effects unnecessarily (overtreatment). This is because if left untreated their PCa would not have developed in their natural lifetime to the point that it would have impacted them. (This is one of the reasons given for not having a national screening programme). HIFU is a niche treatment for suitable men between AS and and radical treatment. It means they have treatment with relatively minor side effects that may provide a cure or at least beat back the cancer for some time with the possibility of repeat HIFU or more radical treatment subsequently if required. So some men will be spared from the debilitating effects of radical treatment.

As regards HIFU not being a proven cure Andrew, I did suggest that you check the YANA site where men had not experienced a recurrence for over 8 years and I am sure that some of the focal urologists could relate cases for longer than this. But what period would you consider necessary for a treatment to be considered a cure? We know of men who have gone 10 years after RT and were even told they had been cured and then had a recurrence. So it can happen years later. Radiotherapy eradicated the cancer in my Prostate and I had much stronger RT than you get in the UK, yet a tumour subsequently grew in it. HIFU burnt this out but another is growing so this may need further focal treatment. Let's agree you see it differently to me but there are a growing number that see it like me. A considerable number of men who have Prostatectomy also need RT and HIFU or other salvage treatment after failed RT so why not accept that HIFU like other treatments will have some failures.

Incidentally, HIFU costs less than surgery as mentioned by Professor M E in the webcast link Lyn. I think those considering HIFU or commenting on it, would do well to view these two videos, (the other one being tagged 2) even though they are a few years old and learn more about the treatment.

See next post as this rotten forum format will not allow me to paste in the link here!!!

Edited by member 13 Jun 2020 at 01:27  | Reason: Not specified

The men I referred to on YANA are mentors not on Chatrooms.

Have you ever had any discussions with leading focal urologists?

Did you watch the videos on Andy's Blog I linked to or have heard lectures on the subject?

Show me where I have suggested any man should have have ANY particular treatment including HIFU. I haven't and have even written previously that people here should NOT recommend a treatment to a man because nobody on this forum is qualified to do so and even if they were they still should not do so without knowing the individual's histology and possible contraindications. I have merely drawn attention to treatments that are possibilities. My thread about Lutinium 177 and several others treatments that not all men or even some consultants are aware of illustrates this. As I have said on many occasions, the treatment a man opts for is up to him provided he is suitable.

Conversely, have you considered that by trying to knock HIFU (and implicitly other focal therapies), you could be encouraging men to have more radical treatments instead, with inherent adverse side effects because they feel they need treatment which in some cases might not be necessary and might be less life changing if a focal therapy was used instead?

When after reading about the development of Hadron Therapy and published papers on results from Japan, I tracked down one of the advocates for it who was an expert on radiation. When I told the Marsden, whose care I was under at the time, that I was having my RT treatment in Germany which would be more intense and boosted with carbon ions, I was cautioned that I would be wasting my money. I mentioned the name of my second opinion and was told that he was out there on his own. Since that time further Hadron facilities have been built in Germany, Italy and many other countries. In typical British fashion we now at last have one Hadron facility at The Christie in Manchester to be followed by the one being constructed at UCLH in London. Both of these only have a cyclotron rather than a synchrotron so will only be available to treat with protons rather than carbon ions and other ions. And guess what, they are also treating PCa with proton beam according to Professor M E, so my doubted second opinion has been proved right!

By the way, when a vaccine is found for Covid 19, I take it that you will want to wait for over 5+ years to show it has no long term adverse effects before having it?

Hi thanks for all your contributions. Hifu is irrelevant to me I have already had treatment, I guess there is a possibility I may need it in the future as a salvage treatment. So the following are just my thoughts. 

If we accepted that hifu didn't cure but merely delayed the disease by five years, would it still not be a valid early treatment?  The side effects of standard treatment are not pleasant. If the side effects from hifu are not too troublesome and if it does not preclude later more aggresive treatment then as long as surveillance was kept up after treatment it could give many more years of good QOL before a more aggressive treatment was needed. It may not be cost effective as people may need two treatments.

There's a lot of 'ifs' in the above paragraph. It would probably be riskier than going for the aggressive treatment straight away, but it may be curative, and it may give longer QOL.