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HIFU in Europe

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Posted 7/13/2009 10:14 AM (GMT 0)

Hi Everyone,

I'm new here having been diagnosed with PC fairly recently. Details below. Initially, I had decided on brachytherapy, but was unable to go ahead with this because of the size of my prostate / slow flow rate. I am now on a three-month course of hormone therapy, which will hopefully reduce the size of my prostate and improve the flow rate. Initially, I was a little despondent at not being able to go ahead immediately with brachytherapy, but I now view this delay as an opportunity to carefully review where I'm going in the future with treatment.

Certain aspects of HIFU are very interesting and seem to me to be worth further investigation. I live in the UK and would like to hear from anyone in the UK or elsewhere in Europe who is either contemplating HIFU or has undergone this treatment, successfully or not so successfully, in the past.

I'm not in any way ignoring the very helpful and interesting comments about HIFU that have been made on this forum in the past by people in North America and elsewhere, but the experiences of people a little 'nearer to home' would be of great help to me.

Cheers,

JerryB-UK

Posted 7/13/2009 12:54 PM (GMT 0)
If you are in the UK are you allowed further opinions and choices? Can you get a second opinion on being non-brachy candidate, even? While you are on hormone therapy might be wise for you to take long hard look at all possible choices even outside the UK, assuming you can pay some money out for treatments, of course. With PCa you may have 1 shot at getting the best protocol for your own situation, does not come with any guarantees on anything, do not be over sold or handed a bill of goods, either. Learn all you can as fast as you can is in your best interests, it is literally a jungle. It is a tough decision no matter how much information you have before you, but best to know all up front before you walk the walk.
Best to you and yours.
Posted 7/13/2009 3:01 PM (GMT 0)
Hi Jerry, I live in the UK and I can confirm that you are entitled to a second opinion on the NHS if you want one.

I've no personal experience of the HIFU route but the UK health authorities are not dismissive of this method, but are very cautious about its long term success because of lack of evidence at this time - see http://guidance.nice.org.uk/IPG118 and http://www.nhs.uk/news/2009/07July/Pages/Ultrasoundforprostatecancer.aspx.

If you've not seen these reports, then I would recommend you read them for objective, unbiased information about HIFU. This should help you with your decision making process.

Best wishes, Roger
Posted 7/13/2009 3:07 PM (GMT 0)
Jerry, welcome to the Forum.  As Zufus says get second or even third opinions.  You seem to be eligible for almost any of the treament options available, so read, research and make a study of the possibilities.
Posted 7/13/2009 3:28 PM (GMT 0)
Thanks Zufus, London 2000, and James C.  All wise words. 

As London 2000 says, I am entitled to a second opinion on the NHS, but that doesn't mean they will fund HIFU unless it's as part of a clinical trial.  As far as I can ascertain I'm not eligible to join a trial because I've started on hormone therapy.  Therefore, if I do eventually decide to go for HIFU it will be a very expensive alternative to the free NHS brachytherapy.  I've been quoted approximate prices of £13 - £14K for HIFU in the UK, but I have yet to check out prices in other European countries.  I suspect that it may be several years before HIFU becomes fully approved by NICE as a treatment option with the NHS, assuming that trials results support the findings to date.

I have a couple of months before my next flow tests, so plenty of time to trawl for information and talk with as many people as possible.  Initially, I shall be comparing treatments without putting cost into the equation.  Once I've made a choice, and if that choice is leaning towards HIFU, I shall than need to decide if the expenditure is justified!

Cheers,

JerryB-UK

Posted 7/13/2009 4:43 PM (GMT 0)
Hi Jerry,
Welcome to HealingWell. HIFU is still in the early stages of trial and while it has promise, there are still few centers that perform it here in the states. It's niche appears to be in early low risk cases and that is what the US study is pocused on. We have had some posters here that have been overstating some things about it though we do recognize it in a current study, but it is available in study format and that is the logical approach to it. Because you had hormone therapy neo-adjuvantly you are right, you may have closed the door on joining the American study. Good luck in your decisions.

Tony
Posted 7/13/2009 5:06 PM (GMT 0)

Greetings, Jerry B.  Welcome to the forum.  You will hear many thoughts here about which treatment is best.  My opinion is that there are many "best" treatments depending on your facts and circumstances.  You are doing exactly the right thing in trying to get as much information as you can and then making a decision that is right for you.  We are all willing to help in any way we can but ultimately the decision comes down to you, your spouse and your health care provider. 

Sorry you have to be here but welcome!  David

p.s.  I'm headed your way in a couple of days - combination of pleasure and business in the London area. 

Posted 7/13/2009 8:44 PM (GMT 0)
From the folks that did the recent London study. Sobering reading: www.nature.com/bjc/journal/v101/n1/pdf/6605116a.pdf
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