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One treatment being scratched from my list--HIFU

Robert1941
Posts: 27
Joined: Oct 2010

Trying to do my homework on various treatment choice options after initially being rushed towards davinci by my doctor. now I am looking at everything but saw this today and don't think Ill be signing up for HIFU soon.

Friday, 10 December 2010
BERKELEY, CA (UroToday.com) - In Austria, costly hospital medical services that are reimbursed not only by the Diagnosis Related Groups (DRG)-system but receive extra tariffs are listed in the hospital benefit catalogue. Each year, hospitals are asked to submit applications to the Ministry of Health for new medical interventions to be included in this catalogue. Annually, the Ludwig Boltzmann Institute for Health Technology Assessment is commissioned by the Austrian Ministry of Health to evaluate the submitted medical interventions concerning efficacy and safety. Our assessments are based on systematic reviews for each intervention and a summary of the scientific evidence according to the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach.

Traditionally, policy-relevant decisions have been reached on the basis of consensus of high-ranking experts in boards and committees. However, this process of exclusively expert-based decision-making is prone to bias, conflict of interests and doctrine. Our aim is to comprehensively synthesise the current scientific evidence of numerous medical interventions to ease rational and transparent decision-making in health policy, regardless of influences from interest groups.

In this context, we have reviewed the scientific evidence concerning High-Intensity Focussed Ultrasound (HIFU) for the treatment of prostate cancer that has been published in the last decade and have assessed the quality of evidence using the GRADE approach. Our systematic review suggests that the available evidence on efficacy and safety of HIFU in prostate cancer is of very low quality, mainly due to lack of control groups. However, most of the limitations identified for HIFU treatment also apply for conventional treatment options. To date, only one randomised trial has been published comparing radical prostatectomy (RP) and watchful waiting that showed the superiority of RP in terms of overall survival, disease-specific survival and the risk of local and systemic disease progression.[1]

The lack of high-quality evidence of HIFU provokes controversy among urologic experts not only in Austria but over the whole of Europe, which is reflected in the differing international guidelines concerning the application of HIFU. These guidelines mainly disagree on the use of HIFU as a primary treatment option versus a salvage treatment option as well as its routine use versus its use within clinical trials only.

Overall, we emphasise the importance of conducting (randomised) controlled trials of good quality and sufficient size comparing HIFU with conventional treatment options, such as RP and radiotherapy, or with active surveillance. Most importantly, patient-relevant outcomes, such as overall survival, cancer-specific survival, adverse events and quality of life have to be considered to assess the true role of HIFU in prostate cancer.

Reference:

Bill-Axelson, A., et al., Radical prostatectomy versus watchful waiting in early prostate cancer. N Engl J Med, 2005. 352(19): 1977-84.

Written by:
Marisa Warmuth, MD, MIPH as part of Beyond the Abstract on UroToday.com. This initiative offers a method of publishing for the professional urology community. Authors are given an opportunity to expand on the circumstances, limitations etc... of their research by referencing the published abstract.

Systematic review of the efficacy and safety of high-intensity focussed ultrasound for the primary and salvage treatment of prostate cancer - Abstract

VascodaGama's picture
VascodaGama
Posts: 3045
Joined: Nov 2010

I read about HIFU years ago and results from treatments were not so "attractive", the success rates regarding time to recurrence were low in comparison to the rates for other types of treatment like surgery, brachytherapy or IMRT.
Data from patients in HIFU studies were quite few too.
Hope you read carefully on the matter before you adventure. Here is a list of papers on HIFU to entertain you.
http://www.ncbi.nlm.nih.gov/sites/entrez?EntrezSystem2.PEntrez.Pmc.Pmc_LimitsTab.LimitsOff=true&db=pmc&cmd=search&term=prostate cancer AND HIFU

Whishing you a good choice.
VGama

Robert1941
Posts: 27
Joined: Oct 2010

for the info but I don't think this is for me but will read the info you posted.

buzzz
Posts: 26
Joined: Aug 2010

You'll never find a surgeon recommending HIFU just like you'll never find a surgeon recommending a chiropractor.

Surgeons recommended surgery for ulcers for 12 years following the evidence that antibiotics cured ulcers, they never even looked into it until the public discovered it and forced it onto them. And we are talking a simple pill, but no they kept on cutting people up.

I simply don't trust their data, follow the money, there's no money in HIFU, not in the short run nor in the long run.

Talk to the HIFU patients, none of us would swap treatment.

Good luck to you all. But I have no side effects to deal with, and life simply goes on, testing my psa 4 times a year and it is undetectable.

SRVR
Posts: 11
Joined: Dec 2010

Good for you buzzz. Surgery is big business and although I don't fault a surgeon for recommending surgery, it's simply not always in OUR best interest.

Do your homework everyone.

Is there an on-line resource where HIFU survivors unite and share their stories?

buzzz
Posts: 26
Joined: Aug 2010

Yes, there is a place, I just found it and will post my story there, it's at cancerforums.net the first thread is devoted entirely to HIFU, they are all different stories. Bottom line that I see is the Sonablate is the best choice, it was mine too.

What really helped me is phoning International HIFU, they gave me phone numbers of other HIFU patients that they had in my area, I've spoken to all of them, met a few. I have asked all of them if they post on forums and not one has said yes, they all found out about HIFU through a friend or relative. One said he did post three years ago but he was erased and thrown out 15 minutes after he posted. They also publish a on line newsletter and you can get on the subscribers list without being a patient.

Robert1941
Posts: 27
Joined: Oct 2010

I read many of the stories. Some good, some not so. Big question for me is the study I posted above and why isn't it approved in the US if its so good??

buzzz
Posts: 26
Joined: Aug 2010

It isn't approved because it is undergoing trials, everything goes through these trials and they are technically finished, awaiting results, although there is a radiation failure using HIFU trial still going on at Walter Reid Army Hospital in Texas and a New York Hopsital, and others, I don't know all of them, it is producing 88% cures.

Some post their reason why it isn't approved, a doctor posted at that site, he says the FDA is corrupt, oh, just go read it, I can't rewrite what he says.

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

My husband's first urologist (the one who diagnosed the prostate cancer) recommended HIFU. AND he is a surgeon. We found out later that he was recommending HIFU because he gets a $10,000 'finders fee' from some doctor down in Mexico.
Whether or not it is a good procedure, it left a bad taste in our mouths.
Hubby chose davinci and is doing great. He liked the idea of actually having a pathologist look at the tissue and grade it accordingly. But each man must make his own decision.

buzzz
Posts: 26
Joined: Aug 2010

That finders fee you mention is not true -- I understand someone telling you that to persuade you. Glad your husband is doing well, but his first doctor was the honest one who cared about you two. HIFU left me in perfect condition, went to the beach a few hours after treatment, never any ED, incontinence or hospital stay, it's too bad there are people scaring some of us off, don't let them. It's costs, but isn't the rest of your life worth it??

Dr. C. Garcia who is a surgeon, but recommends HIFU for some of us, has been doing HIFU for 6 years and charges $15,000. (fifteen thousand) which includes hospital rent, the anesthiesologist, nurses, HIFU machine rent (a big chunk!), everything, and he is the best, he can be found at HIFUMX.com. I recommend him. A finders fee would be unethical and someone would loose their license, plus there isn't $10,000. left over after all the costs!!

Kongo's picture
Kongo
Posts: 1167
Joined: Mar 2010

Buzz, I'm glad the HIFU is working for you and that you haven't suffered any adverse side effects. Are you PSA scores down too?

There always seems to be a lot of chatter about kickbacks and while there may be some instances, the penalties for this are pretty steep and it's hard for me to understand why one would risk his license, reputation, and face jail time for only a few thousand in kick backs and the $10K number cited seems like a pretty high kickback given the total cost of HIFU treatment. There are some news stories about HIFU and kickbacks if you google it but there are plenty of other cases too such as radiologists referring patients to clinics they own, or gifts from drug companies, and so forth.

But I don't think too many doctor's are laying awake at night worrying about losing business to HIFU or any other new treatment. Until FDA approval is forthcoming, HIFU is always going to be a niche market for PCa patients in the United States. Even after approval, there are so many treatments and personal preferences that existing specialists will have plenty of money for a long, long time.

Hope you continue to have good results.

K

buzzz
Posts: 26
Joined: Aug 2010

Thanks kongo, yes I am undetectable, if only I was undetectable to the IRS!

I agree with all that you say. I think the medical establishment is so afraid of all the cancers that HIFU is capable of treating that they will stoop to anything, including spreading rumors to keep us away from HIFU, like it worked on the poster above. The Sonablate is so expensive (3-4 million) that the main cost in HIFU is the 10k usage per treatment of the machine, so there isn't another 10k left for a finders fee. Plus, the HIFU doctors are all walking on egg shells, they need lawyers to make sure going out of the country doesn't jeopardize their license, patients suing for false info, all that you can think of. That's why Dr. Carlos Garcia is 15k, he is a Mexican, he lives in Mexico, he doesn't need to pay into all the malpractice insurance and lawyers that the American based doctors have to. He doesn't need to travel either, he practices in the marina in Puerto Vallarta with the hospital just down the street.

All doctors get perks from drug companies, but HIFU doesn't need any drugs. The drug companies are probably behind the false rumors too. Did you hear that almost all doctors and hospitals have to sign up to only prescribe drugs from one company, then they get lower prices, sometimes there's a better drug from another company but they cannot prescribe it.

I remember that you did another controversial treatment, but I'm forgetting which,, but you also had no adverse side effects, so good on you, keep it up as well (down actually!).

mrshisname's picture
mrshisname
Posts: 186
Joined: Feb 2010

The fee we were quoted was 'about 35,000 dollars' total for the HIFU treatment. My husband's doctor would have accompanied us to Mexico. It all sounded very strange. I'm well aware this is likely a very viable treatment, especially in view of the widespread use in Europe and the current FDA testing. Its just the way it was presented to us, and the willingness of my husband's former doctor to collect the funding, left a bad taste in our mouth. At the time of diagnosis, my husband was getting ready to lose his job and we told the doctor that we would have to access funds from hubbie's retirement account. He didn't bat an eye. I guess, as always, there are good apples and bad apples in the bunch. Had it been presented in a different manner, we might have considered it as an option.
By the way, Kongo, I came across a patient the other day who had undergone cyberknife for lung cancer and is currently in remission. Very exciting stuff.

buzzz
Posts: 26
Joined: Aug 2010

Sounds to me like your husband's doctor was wanting you to pay for his learning experience, he was accompaning you for his lessons to learn hifu, while you still had to pay the doctor and all of his costs, who would have actually treated your husband with hifu. Normally hifu is 25k for American doctors and then you have to pay to get there and hotels. Does sound like you had a bad doctor, but International HIFU is upstanding in everyway.

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