HIFU

Hi JD and welcome

There have been quite a few posts about hi fu recently.

Surgery and RT still tend to be the gold standard although I think that there is quite a following for hi fu now.

There is still not enough data to show the success of hi fu and although there are obviously good results we do get people on here where the cancer has returned.

You say that u have consultation today, is that nhs or private?

I believe that nhs is showing more interest in hi fu and I did read the other day that they r going to expand the service within the nhs, perhaps that tells us something.

Try and find out more about success rates before making a decision, your stats look favourable for hi fu, low PSa,  Gleeson etc

Best wishes

Steve

Thanks Grundo, it’s a non-NHS consultation but I have heard that the clinician I am speaking with has started an NHS HIFU service recently based on the latest 8 year comparative results which seem favourable for HIFU. Will hopefully learn more this afternoon...

Ok, good luck. Bearing in mind my previous post about hi fu expansion in the nhs not sure that it's worth paying for it, be wary of sale tactics.

Steve

I’ve already come across some of that so definitely on my radar. Thanks again

First you have to get your head round the the subject of "cure" - few surgeons or physicians will promise a cure these days, for two reasons.

1. While some 50% of men with PCa die of something else, cure is almost impossible to prove, even with the very best imaging machines. In practice, we all have to assume that 'there's a chance' that it will return, possibly after 5,10,15 years of remission.

2. The one time a cure can be stated with confidence is after post mortem, by which time it's less than helpful.

You have to treat PCa as if you'll have it for life (though, of course, we all hope for that cure). So if the cancer is deemed 'curable', especially if you're young (you don't say), then go for a treatment that has a high chance of 'cure', not one that merely suppresses the disease, requiring further intervention later.

If you 'control' your disease rather than set out to cure it (where cure is an option), you face the day when the cancer cannot be controlled any more. It's not prostate cancer that kills, it's the metastases. And even its supporters don't claim that HIFU can help there.

Everyone knows that cancer advances; but people tend to think of that in terms of tumour size, numbers of metastases, location of spread. But cancer also advances at a cellular level; the prostate cancer cells become less 'differentiated' over time, until at a later stage, they're simply 'cancer cells'. This means that targeted chemotherapy - and hormone therapy - is no longer effective. Many people with stage 4 disease reach that point.

So grab that chance of a 'cure' while it's available: if you miss that boat, and the cancer spreads, no doctor will ever use the word 'cure'.

HIFU is an attractive treatment, with lower incidence of unpleasant side effects (lower, not nil). It's also the subject of a very large marketing budget. But there are very few studies over 10 years, only a couple reach 15 years: so far there is no evidence that in the long term that HIFU matches longer established methods. But it certainly can postpone more invasive treatment.

"Current evidence on HIFU use in prostate cancer patients is of low quality, rendering it difficult to draw conclusions about its efficacy. Until results from case series are confirmed in prospective studies, the widespread use of HIFU is not supported." - that was written in 2011; it's still true, with no controlled studies, and no easy way to compare their results with standard treatment. Indeed, in many studies, those offered HIFU would otherwise almost certainly have remained on active surveillance, with a similar outcome.

The NICE (National Institute for Health and Care Excellence) guideline on HIFU was published in 2008; they have seen no reason to revise it:
"High intensity focused ultrasound (HIFU) and cryotherapy are not recommended for men with localised prostate cancer other than in the context of controlled clinical trials comparing their use with established interventions."

The latest NICE Prostate cancer guideline [published p 09 May 2019] makes no reference to HIFU at all.

 Very interesting and informative read. I also have a consultation with a private HIFU clinic booked so I'll be very keen to hear about JD's thoughts. I'm naturally a sceptical type particularly when someone has profitable service to sell but I imagine it will be difficult in this instance to keep the 'cost' benefit analysis in balance, given the clear appeal of 'minimal' side effects and quick recovery.

A.

Hi Jaydee and delbert,

I have recently posted the same question as you guys regarding hifu.

I definitely was looking to go down the hifu route as yourselves. What changed things for me was the fact that my hifu would have to be on the whole gland. It appears to me that the hifu treatment is more suitable for cancer on one side of the prostate. Then it can be focused on that element and therefore there is no side effects and non invasive. My brother had exactly that and he is flying, after 5 days it was job done!

That does not appear to be the case when the hifu is on the whole gland, when there is a higher risk of side effects. Another thing to consider is whether a TURP would also become part of this procedure, (whole gland only) which may be well be the case. This is not to put you guys off, but like yourselves, I’ve been trying to take everything on board.

I decided to take the brachytherapy option, when considering everything.

I can’t say I made the right decision, especially as my brother is a firm advocate of hifu. I have also heard from some guys on here that are doing well after brachytherapy, so fingers crossed, I will be ok.... I‘be just started on the hormone treatment (runs before the seed implant) and so far my moobs have not grown and I’ve not turned into Dolly Parton singing ‘islands in the stream’.... (yet!)

best wishes, guys, we are all in this together....

Hi bafledman,

Thanks for your contribution. Can I ask if you had consultation with a hifu specialist, and was it that that informed you about the whole gland treatment? - and therefore tilted you towards brachy. Also, if so, how did you assess the information you were given in terms of 'sales pitch'? It seems problematic to me that one is being offered a treatment for a serious condition with all the angst that goes with the decision but also provides a hefty fee for the consultant ...

I'm waiting on my appointment for this discussion - £250 - which I'm happy to spend but on going ahead I'm coughing up 13k! 

Best. Alan

Hi JD,

How was your consultation?  See my reply to Baffledman for my concerns.

Cheers. Alan

Yes, I had a consultation with a hifu specialist. He was very thorough, and was able to access my biopsy result and speak to pathologist, obviously I had to give him permission to obtain my NHs records. This meant he knew exactly how much cancer was in my prostate, and where the cells were located too. 
I paid the same consultation fee as you, and my hifu treatment would have been the same cost as well! I have to say my consultant was very clear in his duty of care, and insisted that I also had consultations regarding my other options - brachytherapy and prostate removal. The reason I went for brachytherapy? Well, the fact that the side effects from whole gland hifu were not as focused hifu, also the fact that a TURP may have been needed, meant that it was not like I initially thought it would be. The brachytherapy, for me personally, just seems more likely to be successful.

I had many sleepless nights trying to work out what treating should take. Now I am on a path I feel more relaxed. I’ve been on the hormone treatment for 1 week now and feel fine.... I’m running same as before too, and can’t wait for the gyms to open again...

I’m 65, Gleason score was 7 (3+4).

Any other questions I can help you with is fine, alan, don’t be afraid to ask.

all the best, mate...