CancerCompass message board discussion started by Chicago on 10/1/2007 http://www.cancercompass.com/message-board/message/all,16671,0.htm Mon, 06 Oct 2008 00:00:00 GMT Mon, 06 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ Hi, I am researching some information about HIFU TREATMENT for a friend. I have found many articles and think that this is the best treatment for him.  I am just looking to see if anybody could give me some websites or hospitals that offer this treatment outside the US, PREFERABLY EUROPE OR ASIA.  I have read about one in Germany, which is the cheapest.  Can anyone give me some insight?  I have read that the cost in Germany is about 8000 EUROS.  Does that include EVERYTHING(airfare, lodging, food and procedure) or just the procedure?  Which one do you recommend?  I also read in the blogs about Japan  costing about $10,000USD.  If anyone can help with where he can go for the best treatment, please let me know.  I appreciate it. D Chicago Mon, 01 Oct 2007 00:00:00 GMT If you Google "HIFU" you will get all of the websites out there.8000 Euros equals about $10,800 dollars. That will be what you pay the hospital before you leave them. Travel, food and lodging are not included in that number. Not every PCa patient is a candidate for this procedure. I suggest that you and your friend do his homework and research all options. No treatment out there is 100% assured of a cure, but some treatments "fit" better than others. What are his PSA, Gleason, Stage., Volume ,Age, etc,etc,?There is an awful lot of hype on most of the HIFU websites. Some folks are in the business of selling Hifu. Others are more interested in treatment and a cure. One thing I can assure you is that HIFU is not HIFU. It matters which machine you choose, where you choose to get it done, and above all, as with any treatment you choose, who you choose to do the procedure. Do your research. You'll be confused and amazed, but you will make the right choice for you.Regards,   murph  Petermurph Wed, 03 Oct 2007 00:00:00 GMT Thanks for your response.  He is a healthy 57 year old with a PSA of 4.2 and a Gleason score of 3+3(6).  He feels that HIFU treatment with be best for him in giving him back his quality of life.  I understand that there are two different machines, Sonablate and Ablatherm. I have heard pros and cons for both.  Which do you suggest?  Have you been through the HIFU treatment?  What are your suggestions?  We found majority of the response pf people who have gone through HIFU treatment were treated by Dr. Suarez in Mexico, Germany and Canada.  I have found a place in Japan at the Tekiyo Hopital and would only cost about $7300 for the treatment minus the lodging, airfare and food expense.  Does anyone know about this place?    Chicago Wed, 03 Oct 2007 00:00:00 GMT With his age and stats. he should look into the FDA clinical trial on HIFU. They are looking for low risk guys like him for the study. No cost to him!I came back from Munich 6 mos.ago I had hifu treatment with Prof. Chaussy and Dr. Thuroff. My last two PSA results have been 0.1 They use the Ablatherm machine. They do a TURP prior to the HIFU. They use different frequencies and duration of pulses than some other treatment centers. You are in a hospital for several days. You walk out without a cath. I mention this because in my mind "HIFU IS NOT HIFU" It matters who, what, when and where you get the peocedure performed. Recovery has not been without its obsticals, but so far I would do it again. Do your homework, get armed with all the informatiuon you can. Check out all treatment options, get second and third opinions on your condition and options from the 'experts'. You will find a path to a cure.Had I not gone to Germany I would have gone to Japan. I spoke with a Doctor who gives similar treatment as I received in Germany, He practices in a hospital outside Tokyo but I forget his name."Cancer is a word, not a sentence"murph  Petermurph Sat, 06 Oct 2007 00:00:00 GMT  On 10/6/2007 Petermurph wrote:With his age and stats. he should look into the FDA clinical trial on HIFU. They are looking for low risk guys like him for the study. No cost to him!I came back from Munich 6 mos.ago I had hifu treatment with Prof. Chaussy and Dr. Thuroff. My last two PSA results have been 0.1 They use the Ablatherm machine. They do a TURP prior to the HIFU. They use different frequencies and duration of pulses than some other treatment centers. You are in a hospital for several days. You walk out without a cath. I mention this because in my mind "HIFU IS NOT HIFU" It matters who, what, when and where you get the peocedure performed. Recovery has not been without its obsticals, but so far I would do it again. Do your homework, get armed with all the informatiuon you can. Check out all treatment options, get second and third opinions on your condition and options from the 'experts'. You will find a path to a cure.Had I not gone to Germany I would have gone to Japan. I spoke with a Doctor who gives similar treatment as I received in Germany, He practices in a hospital outside Tokyo but I forget his name."Cancer is a word, not a sentence"murph Murph - recently diagnosed - gleason 6 psa 5.6 - interested in hifu or proton beam. Why Germany not Canada?  Feel it is best to go with experience. Would like to talk to you if possible thanks Bob  Rihco Sat, 06 Oct 2007 00:00:00 GMT My husband had HIFU 2 months ago and so far so good.  Everything is working fine.  He is having some minor problem but nothing to be concerned about at this point.  We went to Mexico and his Dr. uses Sonoblate.   I do not know anything about Canada or the  Ablatherm device .   The only negative thing I can say is we were told that the day after the procedure, other than the catheter, “You would not know that you had anything done.”  Your recovery time is not like having surgery, that for sure, but it done take a few days to get your strength back.    We have talked to several gentlemen that have had HIFU and they all agree with this.  But there are no regrets he is glad he went this route.  His doctor  is Dr. Ronald Wheeler in Sarasota Florida and I highly recommend him.    Joe Anne Tue, 09 Oct 2007 00:00:00 GMT Bob Nice to talk to you yesterday. I have contacted several other HIFU patients and one Proton Beam patient that I know of, and asked if they would mind me giving you their e-mail address. Keep doing the leg work. The more info you consume the better off you will be in the long run. I go for my 6month PSA test tomorrow. Its amazing how anxious this makes me feel. I will let you know how it comes out, and I will update my YANAnow post. Petermurph Wed, 10 Oct 2007 00:00:00 GMT Hi,Thank you all for the information you provide.I ws diagnosed with Gleason = 6(3+3), PSA = 3.8, VOLUME = 200 CC, hence I am qualified to the HIFU. I am 60 years old and in excellent physical shape + reasonable sex (not like 18, but there are advantage to teh experience) I made lots of reseacrch and tried to find solid information, and it is so difficlt to. My main goals are quality of life an dlife expectancy.The main conclusions I have are:HIFU is the treatment I woudl select. SB500 seems to have better results than ablatherm although ablatherm gained much more experience.There is a learning curve, and one should go to those that practiced at least 75-100 procedures. Hence, if you want to participate in a trail (which I would have had I been a US citizen), make sure you are treated by an experienced Dr.I exchanged emails with several Dr. doing the HIFU, I must say that they were VERY collaborative despite the fact that I asked lots of questions.Living in Israel, there is a local  Dr. who made 20 procedures, to the best of my understanding with very good resuts, I spoke with the latest one who wa svery happy. Yet, I tend to do it oversea, just becasue of teh experience. Initilly i tended to do it in Mexico, the professor was great, very helful and has lots of experience with very good statistics. However given the distance and 36 hours light back home and the need for occational treatment (follow up is not a problem), i am trying to narrow the radius.I met with another one, in Canada, who made a large number of procedures and spent 45 minutes with me. I am confident that I can trust him too, again the only draw back is the distance and possible additional treatments that probably no Dr. would like to take in Israel since i was not treated by him.Questions:Based on the above, woudl you encourage the HIFU + SB500?Is there really a need for complementary treatment (removing cathether, flushing the area treated can be done anywhere). So, is distance a probelm?What are your PSA nadir and Biophsy taken after x period? I knwo that you are not statistics, but it is good to hear.What are the drwawbacks of this procedure compared with Radical Prostatecomy (RP)? RP was recommended by my local Dr. and I can have it done by the top Dr. in Isarel. They do not like the HIFU since there is not enough data and mainy not enough long term data. Any other advise is welcome Thanks, MoniStar MoniStar Sat, 13 Oct 2007 00:00:00 GMT Hapy that this was just a typo. the volume is 20 CC "only" MoniStar Sat, 13 Oct 2007 00:00:00 GMT I just got back from Munich for HiFu.  It was $18,000 U.S. including airfare.  It's more expensive now than 6 months ago because of the lousy US dollar . Petewen Fri, 19 Oct 2007 00:00:00 GMT Hi PeterWen, Hope you are doing fine. I hapened to be in Munich last week for busines purposes and did not have the time to the the important things.Money is not an issue at all, a good part is being covered by insurance and I could fund the whole thing, so my concern is which is the best.Were you treated by Ablatherm or SB-500?I wish you a quick and full recovery.Moni MoniStar Wed, 24 Oct 2007 00:00:00 GMT  On 10/24/2007 MoniStar wrote:Hi PeterWen, Hope you are doing fine. I hapened to be in Munich last week for busines purposes and did not have the time to the the important things.Money is not an issue at all, a good part is being covered by insurance and I could fund the whole thing, so my concern is which is the best.Were you treated by Ablatherm or SB-500?I wish you a quick and full recovery.MoniI had the Ablatherm which is what they use pretty much everywhere except in some areas around the USA.  So far everything is going fine, but I won't have my first psa test for another 2 weeks.Petewen Petewen Tue, 30 Oct 2007 00:00:00 GMT Hi,Thanks for your reply. I wish you get the good result we all are looking for.I spoke with several people who took this procedure, they were all happy and "clean". I have a scheduled procedure in Toronto with Dr. Barkin. He made around 200 procedures, hence I feel confidence with his experience. The one in Isarel made so far 20 procedures only. They are now trying to bring in Dr. Emberton from teh UK to cure our Prime Minister and at the same time have him perform additional number of procedures. If they manage to have him come in, I will opt this option. All the best,Moni  MoniStar Wed, 31 Oct 2007 00:00:00 GMT So you are going to the maplelead clinic in toronto?  Great choice.  I'm sure you'll be pleased.  Ask them about the advisability of having a TURP done BEFORE you go there for the HiFu, since it will greatly improve your recovery Pete W. Petewen Wed, 31 Oct 2007 00:00:00 GMT Hi Peter, I am going to this clinic: http://www.can-amhifu.com/index.php they are using HIFU too, however using a diferent technology. Their technology is teh Sonablath 500. My feeling is that this equipment has lots of advantages, hence better results than the ablatherm used in mappleleaf.As for TRUP I will not need is since the size is small = 20 cc "obly". BTW, it is just a coincidence that our prime minister was diagnosed for having the same PC in intial stage, so there is a lot of commotion over here in Israel re: PC. Hope the local guys will be able to use it in order to promote the HIFU treatment.Thansk for your support, Moni MoniStar Thu, 01 Nov 2007 00:00:00 GMT  On 10/6/2007 Petermurph wrote:With his age and stats. he should look into the FDA clinical trial on HIFU. They are looking for low risk guys like him for the study. No cost to him!I came back from Munich 6 mos.ago I had hifu treatment with Prof. Chaussy and Dr. Thuroff. My last two PSA results have been 0.1 They use the Ablatherm machine. They do a TURP prior to the HIFU. They use different frequencies and duration of pulses than some other treatment centers. You are in a hospital for several days. You walk out without a cath. I mention this because in my mind "HIFU IS NOT HIFU" It matters who, what, when and where you get the peocedure performed. Recovery has not been without its obsticals, but so far I would do it again. Do your homework, get armed with all the informatiuon you can. Check out all treatment options, get second and third opinions on your condition and options from the 'experts'. You will find a path to a cure.Had I not gone to Germany I would have gone to Japan. I spoke with a Doctor who gives similar treatment as I received in Germany, He practices in a hospital outside Tokyo but I forget his name."Cancer is a word, not a sentence"murph Can you give me the name of the hospital or clinic in Germany where you had the treatment?  whitehorse Mon, 07 Apr 2008 00:00:00 GMT  On 10/9/2007 Joe Anne wrote:My husband had HIFU 2 months ago and so far so good.  Everything is working fine.  He is having some minor problem but nothing to be concerned about at this point.  We went to Mexico and his Dr. uses Sonoblate.   I do not know anything about Canada or the  Ablatherm device .   The only negative thing I can say is we were told that the day after the procedure, other than the catheter, “You would not know that you had anything done.”  Your recovery time is not like having surgery, that for sure, but it done take a few days to get your strength back.    We have talked to several gentlemen that have had HIFU and they all agree with this.  But there are no regrets he is glad he went this route.  His doctor  is Dr. Ronald Wheeler in Sarasota Florida and I highly recommend him.   here's my hifu/dr wheeler story: I'm 55years old,married, diagnosed with a 3+3 Gleason and 6.1 psa in1998. Watchful waited til 2000 then began more active surveilance withintermittent hormone therapy--casodex and later casodex+tamoxofin.--and guided by Dr Wheeler and his chronic diseasemanagement protocol. This continued til April/May 2006. I was thentreated(HIFU) by Drs Wheeler and Suarez in PV Mexico in July 2006.After the procedure and hours later while back in my hotel with mywife,the suprapubic cathetar had somehow become dislodged during thenight and I went into urinary retention. I had to be rushed to the ERto re-insert the cathetar; this time a Foley.This cathetar stayed infor about 6 weeks.In November 2006, 90 day post procedure PSA was 0.7, all seemed to begoing well; obviously, no erections but hope prevailed. In January2007, after several trips to the ER for bladder retention, I underwenta laser surgical procedure to relieve the strictures by anotherurologist, though not schooled with HIFU. Then in March/April 2007 PSAbegan to rise again. Dr Wheeler performed a MRIS and determinedcancerous cells remained in the apex of the prostate; however,capsuleand neurovascular bundles intact. We returned to PV in July 2007 torepeat the HIFU, and months later PSA continue to rise. In November2007 another MRIS, and this time also a PETSCAN, both essentiallyunremarkable.Prior to HIFU I was completely POTENT with little to no urinarysymptoms. Prior to HIFU I occasionally took 100mg of viagra for thatextra assurance. Since HIFU, I take all 3 of the ED meds, exercisewith VED, and ran the course of bimix, trimx, quadmix penileinjections, with little success, and many issues, ie, penile damagefrom the injections and my internist telling me stories of reportedvision loss from normal dose ED meds, and no data yet for guys takingsuch high doses.I remain hopeful, despite 2 other medical doctors, with no dog in thisfight, telling me my nerves were irreparablly fried during both HIFUs.Today, my last PSA was 6.3 and though low in number, significant thatit is rising again. I'm back on casodex+tamoxofin, impotent andleaking urine.On the one hand,Dr Wheeler assures me potency willreturn. On the other hand, Dr Wheeler also assured me 2 years ago HIFUwould CURE my cancer without potency and urinary complications. I'mnot at all happy with my HIFU results. For me HIFU has been a lifealtering disaster. However, I'm not prepared to condemn the technologybecause of my bad result.new hifu support group: http://groups.yahoo.com/group/hifu_survivers/join HIFU group member stat summary:When was your initial diagnosis? 1998What was your PSA going in? going in to 1st HIFU 1.1What was your Gleeson going in? 3+3 =6Any other treatments? intermittent hormonal casodex+tamoxofinHow much did it cost you (USD) (my initial treatment was 20K and the2nd treatment 10K)Did they use the Sonoblate? yesDo you know/have any idea how long the probe was in (and/or otherdata)? no idea  raynj Mon, 14 Apr 2008 00:00:00 GMT