HIFU in Europe

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JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 7/13/2009 5:14 AM (GMT -6)   

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


Age - 67

PSA (February 2009) 7.8 ug/L. This had risen from 5.3 ug/L in August 2008.

Biopsy (3rd April 2009). Number of samples 10. Number of samples containing cancer 10% on left and 20% on right. Bone marrow & MRI scans (7th May 2009) indicate no perineural or extra-prostatic spread. Gleason 7 (4+3). T stage diagnosis 2b. Prostate size - 52 cc

Was given a choice of RP or Brachytherapy and decided on Brachytherapy. However, flow test on 24th June 2009 showed flow rate to be too slow to permit Brachytherapy.

Started hormone therapy on 3rd June 2009 for 3 months (Prostap3 injection) preceeded by Cyproterone Acetate 100 mg tds. Hopefully this will shrink my prosate / improve flow rate sufficiently for Brachytherapy or maybe HIFU.


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 7/13/2009 7:54 AM (GMT -6)   
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.
 "I wouldn't join a club that would have me as a member" (Groucho Marx)


london2000
Regular Member


Date Joined Jun 2009
Total Posts : 36
   Posted 7/13/2009 10:01 AM (GMT -6)   
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
Diagnosed with PCa in April 09, aged 59. PSA 9.5 ng/mL, Gleason 3+3, 3/8 cores positive on biopsy.

Had laparoscopic radical prostatectomy in 21 May 09. Histopathology raised Gleason score to 3+4 but cancer confined to capsule with surgical margins being negative. Stage T2c. Nerves spared.

Catheter removed on 4 June 09. Currently coping with incontinence issues, but making progress!


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 7/13/2009 10:07 AM (GMT -6)   
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.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
21 mts: ED- 50 mg Viagra 3X week, pump daily,Trimix .35ml 2X week continues
PSA's: .04 each 3 months


JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 7/13/2009 10:28 AM (GMT -6)   
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

Age - 67

PSA (February 2009) 7.8 ug/L. This had risen from 5.3 ug/L in August 2008.

Biopsy (3rd April 2009). Number of samples 10. Number of samples containing cancer 10% on left and 20% on right. Bone marrow & MRI scans (7th May 2009) indicate no perineural or extra-prostatic spread. Gleason 7 (4+3). T stage diagnosis 2b. Prostate size - 52 cc

Was given a choice of RP or Brachytherapy and decided on Brachytherapy. However, flow test on 24th June 2009 showed flow rate to be too slow to permit Brachytherapy.

Started hormone therapy on 3rd June 2009 for 3 months (Prostap3 injection) preceeded by Cyproterone Acetate 100 mg tds. Hopefully this will shrink my prosate / improve flow rate sufficiently for Brachytherapy or maybe HIFU.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 7/13/2009 11:43 AM (GMT -6)   
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
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Geason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


CPA
Veteran Member


Date Joined Feb 2008
Total Posts : 655
   Posted 7/13/2009 12:06 PM (GMT -6)   

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. 


Diagnosed Dec 2007 during annual routine physical at age 55
PSA doubled from previous year from 1.5 to 3.2
12 biopsies - 2 pos; 2 marginal
Gleason 3+3; upgraded to 4+3 post surgery
RRP 4 Feb 08; both nerves spared
Good pathology - no margins - all encapsulated
Catheter out Feb 13 - pad free Feb 16
PSA every 90 days - ZERO's everytime!
Great wife and family who take very good care of me


CapnLarry
Regular Member


Date Joined Apr 2009
Total Posts : 75
   Posted 7/13/2009 3:44 PM (GMT -6)   
From the folks that did the recent London study. Sobering reading: www.nature.com/bjc/journal/v101/n1/pdf/6605116a.pdf
Larry Shick
Personal homepage incl. PCa story: www.sv-moira.com.
01/09: Diagnosed (age 60) biopsy PSA 4.4, free PSA 9%, T2c stage, Gleason 7 (3+4), 7 of 14 cores; 6'2", 200 lbs.
03/09: Robotic surgery (Dr. Kawachi, City of Hope) 47 gms, 10% involved, staging/Gleason unchanged (pT2cNXMX), margins clear, no ECE/sem ves involvement, fully continent from day 1, some success w/Viagra 50mg/day.
Followup: 05/09 0.006

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