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So what about HIFU????

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

I see alot of people on here mentioning HIFU...and saw one tread where someone was talking about it being the next thing to a total cure...and yet someone else telling
them to stop pedaling their unapproved cure...???

I am perplexed....

Please someone tell me what it is and if it is a good or not so good treatment??

thanks~~

erisian's picture
erisian
Posts: 109
Joined: Dec 2008

That's a sore subject with some around here...
What it is is High Intensity Focused Ultrasound. It creates heat in a small space around the focal point. It should be a good treatment for localized tumors of any kind. Because of the focus, it should do minimal damage to surrounding tissue, and unlike any form of radiation, it isn't inherently carcinogenic. And unlike surgery, it is noninvasive. The trouble is, it hasn't yet received FDA approval, so it is only currently available outside the US. So it can be said that they don't have any studies proving that it is effective. That means no _US_ studies have been done, and no approval means no insurance coverage.

Hoosierdaddy's picture
Hoosierdaddy
Posts: 16
Joined: Mar 2010

Dr. Michael Koch at Indiana University Med Center told me he led a clinical trial on HIFU, and halted it before completion. You may wish to contact him for information. He did my DaVinci surgery in Dec. 09. As good as HIFU sounds, I decided it was not for me. It's done out of the country only at a cost of $25,000, not covered by insurance.

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

He also mentioned that the company that manufactures the HIFU machine FIRED Dr. Suarez for unprofessional practices. MAKE SURE IF YOU DO HIFU it is NOT Dr. Suarez doing it!

the.wife
Posts: 20
Joined: Oct 2009

Thought someone may be interested in who Dr. Suarez is, he is THE guy who brought HIFU to the U.S.

He has actively volunteered his services to his community and is the past president of the League Against Cancer (www.leagueagainstcancer.com), a Miami based non-for-profit organization in which doctors volunteer their time and services, as well raise donations to treat cancer victims who have limited or no economic resources. The organization received the President’s Community Volunteer award in 1990, by former President George H. Bush. Several years later The United States Congress commended Dr. Suarez for his continued community volunteer activities, and again was personally recognized by President Bush in 2002 for volunteer spirit and for changing the lives of so many.

Dr. Suarez was the first American urologist to clinically practice HIFU outside the FDA clinical trial sites. Shortly thereafter, he and business partners founded USHIFU and the International HIFU Centers which currently operate throughout Canada, Mexico, South and Central America, the Bahamas, India, and South Africa. Under Dr Suarez’s guidance, USHIFU and International HIFU Centers have provided training to over several hundred urologist and treated over 1,000 patients.

As he is still treating men with HIFU, he certainly hasn’t been fired by the company that owns the Sonablate.

Dr. Suarez is a Board certified urologist who practices in Miami, Florida, and is a former faculty member of the University of Miami department of Urology. Dr Suarez completed his training in general surgery at Northwestern University, Chicago, Illinois, and his urology residency and fellowship at Tulane University School of Medicine, New Orleans, Louisiana. He has received numerous awards including the S.E.S American Urology Association prestigious Montague Boyd award for excellence in research. He is an active member of numerous medical societies including the Societe Internationale D’Urologie, the European Urology Association, the New York Academy of Sciences and the American Urologic Association. He is a fellow of the American College of Surgeons and the American Academy of Pediatrics.

I don’t like it when people talk about someone without knowing both sides, this is a respected surgeon who wants to honor his Hippocratic Oath by treating men with HIFU.

Dr. Suarez has said, "This is really my passion, We can't differentiate between a biologically aggressive [prostate] cancer and a nonaggressive cancer, so we're overtreating everybody with radical surgery and radiation, often with devastating side effects“.

Anyone who takes such radical moves to forward a cancer cure is a great guy, because of him prostate cancer may someday be the gentle cure it should be. And we can see why Dr. Koch is so jealous of Dr. Suarez.

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

also

Swingshiftworker
Posts: 626
Joined: Mar 2010

I just started looking into HIFU.

Not sure why people regard it as SO controversial. Yeah, it's not FDA approved but the US is often the last to adopt new technologies and we're not talking about quackery -- the technology is similar to IMRT but uses ultrasound instead of photon radiation. You can get HIFU in Europe, Asia, Canada, Mexico, Argentina, India and the Carribean. Ancedotal reports by patients who've received it are positive -- but not universally so.

So, it's not a perfect "cure" and the quality of treatment depends on the skill & experience of the person (or people) implementing it (which is pretty limited to date. One HIFU mfg (Sonablate) claims 20-30% ED risk and only 0-2%incontinence risk but you have to wear a catheter for 1-4 wks following treatment and still have risk of strictures and rectal bleeding with 94% disease free survival after 4 years and an 87% negative biopsy rate after 6 months, which isn't all that impressive to me.

See: http://www.internationalhifu.com/prostate-cancer-treatments-hfiuforprostate-65.html.

You can also find an extensive discussion of HIFC -- the good and the bad -- in this thread on the Prostate Cancer Forum: http://www.cancerforums.net/about13991.html.

the.wife
Posts: 20
Joined: Oct 2009

Swing shift,

I found the odds of 94% disease free survival quite impressive! Yes, it may be higher with surgery, but the odds of him being incontinent and ED are really high with surgery and I can't bare the thought of that, our doctor made incontinence sound like not a big deal, which really ticked me off, so I just booked HIFU in Mexico and can't wait.

Seems to me the "sore subject" of HIFU is because some people can't afford it, I decided that I can't afford not to take the HIFU road, I'll let you all know what happens. Let's all pray it gets approved soon, so our options are more honest.

Trew
Posts: 891
Joined: Jan 2010

Less controverisal and highly effective is proton therapy. And you avoid the risks associated with surgery.

New proton centers are being built in a number of areas- expensive, inconvienent for sure since you have to be away from home for most people, but excellent treatment and outcomes.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

the Proton therapy does sound good...the only discouraging thing I read was
a possible increased risk of bladder cancer after the Proton treatment

I didnt understand why this would be a risk???

Trew
Posts: 891
Joined: Jan 2010

I have not heard about this in the comments by men who keep sharing about their proton days years after. I understand I could get bladder cancer, but my PCa went into the bladderneck and maybe touched the bladder itself. If I do get bladder cancer it would hardly be the fault of the proton therapy I had.

Radiaiton is toughon the body, too, but you do what you have to do. I just know- after the fact, quality of life is a very important issue to consider with any treatment decisions.

Personally, I think the stage of deciding what to do is as difficult as the treatment itself. Whatever you do, it has consequences. PC is just nasty but the vast majority of men have pretty good quality of life after proton therapy.

Did you read Robert Mackini's book on prostate cancer and his treatment at LLU? I think he may even take phone calls. I know it has been some years now since his proton therapy was completed and he is still a happy man and firing real bullets and not blanks.

Evagirl's picture
Evagirl
Posts: 60
Joined: Mar 2010

You sure have that right about the decision making...

I feel content one day with our decison to have surgery and the next day I am second guessing myself... I dont want to look back and think " we should have done something
different" I dont know , I am just so confused sometimes....
and then again...DH has madeup his mind and I dont want to destroy his peace of mind..

I will go and try to find info on Robert Mackini's book...

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

You can call out to Loma Linda Hospital in Ca and they will send you the book for free. I did read the book and my dad was treated at Loma Linda with Proton. The book has some good information but Bob (robert) Tells a story of seeing his brother after open prostate surgery...I got the impression after reading that Bob was trying to scare people away frrom surgery. (just my thought). The robotic is far from that type of surgery. I was up walking (Short distance) The evening after my surgery.

Larry

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

The stats quoted to us by the radiation oncologist we visited were only for a 10 year period.
It is a known fact that radiation can cause cancer later on in a person's life. I see it all the time in the medical field. I have a relative who was radiated for Hodgkins in her 20's (chest radiation) who later developed breast cancer as well as heart issues - all from the radiation (she is now in her late 50's).

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

I live in Canada where HIFU has been available for years.

I could certainly afford the $27,000 price tag, but decided against it because: 1. the jury is still out on the long-term effectiveness of this procedure. 2. the location of the cancer in my prostate made it very likely that I would have serious ED problems as a result of the treatment. I opted for surgery. The pathology report and my recovery both proved that I made the right decision for my particular case.

It was only a "sore subject" because of one particular individual who really pushed HIFU so much in different threads (conversations) and in some completely unrelated topics, that it appeared this person was getting a "finder's fee" from the HIFU clinic in Mexico. That's unfortunate, because it hurt the credibility of this treatment option.

the.wife
Posts: 20
Joined: Oct 2009

Proton therapy didn't go through any trials either, so there's no long term success rate and it's radiation, that's why it may cause cancer later on. I'm still very happy we were accepted for hifu, I realize not everyone is accepted. International HIFU seems to me to be a very professional outfit, I don't believe they give out finders fees, how could they actually track it? You can read the credibility of hifu at cancerforums.net, like someone else posted. I'm staying positive and focused, with 30 pages of info & questions they sent us!

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

There's no doubt in my mind that International HIFU is a very professional outfit. In addition, HIFU looks like a very promising treatment option for some with PC... and that's a very positive step.

I invited you to reread my entry above. I never questioned the credibility of HIFU and I did not mention "International HIFU" in connection with a "finder's fee", so please don't put words in my mouth.

I also invite you to read the "Visit with Dr. Mike Koch" discussion on this website. It is the first entry for that particular discussion... (but please read the entire thread to put this into context)... and I quote from that first entry:

"Also, the lead investigator there at IU that worked for the company that makes the equipment, (Suarez) was FIRED by the company and taken out of the clinical trials research and this is when he started practicing in Mexico. Dr. Koch also said that he is paying $10,000 'finders fee' to MD's here who get their patients to go to Mexico."

hopeful and opt...
Posts: 1293
Joined: Apr 2009

statement which may or may not be true.

In my change I came across a candian two dollar piece, 1996. It's kinda silver on the outside rim and tan in the middle with a pic of elisabeth the second on one side and a bear on the other side( I think that I mighta picked it up when we went to glazier park)...........kinda interesting that canada and the usa took different paths.....it seems that both choices turned out to be right.

Ira

luckyman2's picture
luckyman2
Posts: 54
Joined: Sep 2009

You stated, "...which really ticked me off, so I just booked HIFU in Mexico... " and you also stated, "... I decided that I can't afford not to take the HIFU road".

I'm a bit confused by your CSN name, "the.wife".

Are you the wife of the man who has PC, or are you the man who has it? I've seen earlier postings by you and you have written as the wife of a man who was just diagnosed with PC.

bdhilton
Posts: 756
Joined: Jan 2010

Humm…I am confused to by these statements too... I think you are on to something "Watson"

the.wife
Posts: 20
Joined: Oct 2009

Yes, I am the wife of a man who has PC. Isn’t International HIFU the only place where you can book HIFU out of the country? That’s why I thought that’s what you meant.

I don’t believe Dr. Koch about the finders fee, I think doctors are resentful of HIFU and afraid of it’s approval. Dr. Koch could lose his license over a finders fee.

I don’t understand your confusion over my statement that I am afraid of NOT taking the HIFU road. I think it the least likely to hurt my sweetie.

Now, I don’t think I’ll be back, I want to stay positive, and this isn‘t a nice forum. We aren’t booked with Suarez, we are booked with Dr. S. Scionti. Thanks for the nice welcome…..

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

that you aren't booked with Suarez. I hear that Scionti has lots of experience and he is the man to go to.
As far as Dr. Koch, I've known him about 2 years now, and have checked him out thoroughly, he is quite experienced, considered a prostate cancer expert in this country, and I don't think he is 'afraid' of HIFU, he was the director of the clinical trials for it at IU until Suarez was kicked out and fired. He was not saying HE collected a finder's fee, he was saying that 'some docs' were. I doubt he would say these things flippantly, he has a sterling reputation.
I wish you the best of luck with your decision. I think HIFU is promising, just needs a little more research. There are virtually NO convincing studies out there that meet the standards of research.
My hubby has opted for robotic surgery with Randy's 'rock star' surgeon. He and his partner have done these procedures, now numbering in the thousands. Had Dr. Koch done more than them, hubby would have chosen him.
Each person has to feel comfortable with their decision. We wish you well.

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

I wish you every best wish but hope you didn't book with this guy. Have it from Dr. Koch that he was kicked out of the clinical trials and also fired by the company that makes the HIFU machine...

the.wife
Posts: 20
Joined: Oct 2009

I got to thinking this morning….

My husband’s local doctor is on the International HIFU list of supporting doctors. However he pooh poohed HIFU quite dramatically, he also put down radiation, saying it causes other cancers. He is a surgeon, and each surgery makes him $7,000. If the HIFU doctors pay $10,000. to doctors for referring someone you would certainly think he would have been more cordial towards us when we said we were going to have HIFU, but instead he told us not to call him. Which I am happy not to!

I think you guys are speculating and it isn’t right. And I wouldn’t trust this Dr. Koch.

BTW, is Randy getting a finders fee?

I wish you well too mrshisname, we are all in the same boat, and it’s no fun.

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

We had quite the different experience with our local urologist. When we had 'the talk', he immediately suggested HIFU. WHen we asked if it were him, what would he do, he immediately said HIFU. Then told us the price. It blew us away. He then advised us to go do some research and get back with him. It was then that we found out that he had done no HIFU procedures himself, but his partner was 'learning' down in Mexico. They are getting patients to go to Mexico and they accompany him, and I think that they both are learning from whoever is down there. I don't know if it was Suarez or Scionti. Anyway, his partner has only done 14 HIFU procedures. This of course, is not enough experience for us, but we really didn't investigate it too much further, hubbie wants surgery because he wants to see the actual pathology reports.
We just thought it was really odd how he immediately started talking up HIFU.
Now, I've known Dr. Koch a few years, our son goes to college in Indianapolis and needed a urologist a few years ago for kidney stones. He is the director of urology at Indiana Medical Center and the immediate past president of the American Urological Assn. He is a widely regarded prostate cancer expert. He had bad dealings with Suarez during the original HIFU clinical trials in Indy, and as I told you before, Suarez was fired and the research halted.
I don't believe Koch would risk his stellar reputation by telling these things to patients. I trust him and I believe him.
ANYWAY, what I really wanted to say, is could you post a thread and keep us updated on how it goes with your husband's HIFU? I think it would be a valuable resource here on the board to have a thread available as a patient goes thru the HIFU experience. WHen is his procedure??

the.wife
Posts: 20
Joined: Oct 2009

I phoned International HIFU and asked about Dr. Suarez being fired, they said when he decided to treat men out of the country he knew he couldn’t be in the trials, he still wanted to be, as he is motivated to get hifu approved. It’s called a conflict of interest, as he was making money off HIFU. So, he wasn't "FIRED" like your doctor implied.

I found a guy who was treated by him over 2 years ago, he is cancer free and thinks the world of him.

I didn’t have the courage to ask if they gave out finders fees, as I think it absurd, they are a new company and everything they do is being watched, they want HIFU approved, they would make infinitely more money when it’s approved, they couldn’t afford to make such a huge mistake.

We are booked May 15th, we didn‘t chose Dr. Scionti, we just booked Puerto Vallarta and that‘s who we think we get. Suarez works in Canada & the Dominican Republic, I think. Mrshername, I will keep you posted, but I think there are men here who want us girls to disappear, they don’t understand ~ not everyone is like them, my guy won’t look at these forums! He is very happy for the time I have to spend. Your doctor who said he would get hifu if it was him was a really honest guy, as my urologist was a creep ~ even though International HIFU said they recommend him because he agreed to work with their patients, but we have another doctor who is happy to help with anything post hifu, and eager to learn from us.

We just had to sign a form from HIFU saying we know that other doctors will be observing, we could have declined to let them, HIFU is on a roll.

We don’t understand the need for a pathology report, we have a biopsy, if hifu cooks the cancer then it’s dead, why know anything else? But, good luck to you two ~ too!!! He won't need radiation afterwards will he? I hope not. This is a beast. Probably the reason single men die on average 10 years before married men.

 

Trew
Posts: 891
Joined: Jan 2010

I am glad you are on this board with us men. Men aren't the only one's involved with PC. Men with ED and urinary problems can't be that much fun to live with, though I am sure you are a real trooper type and could do it. But men can start getting really depressed with certain male problems, and depression leads to all kinds of problems. So, the.wife- you go hunting for the best choice you can find out there. I personally believe surgery should be at the bottom of the list, but I have said that before.

Quality is always better than quanity. How many of us have said when seeing someone in a nursing home unable to care for themselves, "I never want to be like that!" Well, in a way, that is what we are dealing with- quality of life. Personally, I would rather live better than longer.

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

I'm also glad to hear the wifes or significant others on here. It helps to keep a fresh view point on our cancer battle hearing your thoughts and view points.

I wish your husband good success on HIFU....I looked into then decided against due to my gleason score. Even talked to one of the Docs that does HIFU and he was 'borderline' on if HIFU Would be the answer for my particular case.

Larry

the.wife
Posts: 20
Joined: Oct 2009

Thought someone may be interested in who Dr. Suarez is, he is THE guy who brought HIFU to the U.S.

He has actively volunteered his services to his community and is the past president of the League Against Cancer (www.leagueagainstcancer.com), a Miami based non-for-profit organization in which doctors volunteer their time and services, as well raise donations to treat cancer victims who have limited or no economic resources. The organization received the President’s Community Volunteer award in 1990, by former President George H. Bush. Several years later The United States Congress commended Dr. Suarez for his continued community volunteer activities, and again was personally recognized by President Bush in 2002 for volunteer spirit and for changing the lives of so many.

Dr. Suarez was the first American urologist to clinically practice HIFU outside the FDA clinical trial sites. Shortly thereafter, he and business partners founded USHIFU and the International HIFU Centers which currently operate throughout Canada, Mexico, South and Central America, the Bahamas, India, and South Africa. Under Dr Suarez’s guidance, USHIFU and International HIFU Centers have provided training to over several hundred urologist and treated over 1,000 patients.

As he is still treating men with HIFU, he certainly hasn’t been fired by the company that owns the Sonablate.

Dr. Suarez is a Board certified urologist who practices in Miami, Florida, and is a former faculty member of the University of Miami department of Urology. Dr Suarez completed his training in general surgery at Northwestern University, Chicago, Illinois, and his urology residency and fellowship at Tulane University School of Medicine, New Orleans, Louisiana. He has received numerous awards including the S.E.S American Urology Association prestigious Montague Boyd award for excellence in research. He is an active member of numerous medical societies including the Societe Internationale D’Urologie, the European Urology Association, the New York Academy of Sciences and the American Urologic Association. He is a fellow of the American College of Surgeons and the American Academy of Pediatrics.

I don’t like it when people talk about someone without knowing both sides, this is a respected surgeon who wants to honor his Hippocratic Oath by treating men with HIFU.

Dr. Suarez has said, "This is really my passion, We can't differentiate between a biologically aggressive [prostate] cancer and a nonaggressive cancer, so we're overtreating everybody with radical surgery and radiation, often with devastating side effects“.

He is my hero, anyone who takes such radical moves to forward cancer care is a great guy, because of him prostate cancer may someday be the gentle cure it should be. and we see why Dr. Koch is so jealous of Dr. Suarez.

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

So is he practicing both in Florida and in Mexico? Are you sure this is the same Dr. Suarez?

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

Link to ABC News story on Dr. Suarez' claims questioned by experts such as Johns Hopkins Dr. Walsh.

http://abcnews.go.com/Health/story?id=4537744&page=3

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

The Chairman and CEO of HIFU International, where Dr. Suarez is the co-founder and medical director, is a 28 year hold history major from Vanderbilt. He founded the company when he was 23.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

Coming from one of the most prolific figures in Prostate research and treatment Dr. Walsh at John Hopkins

"Walsh said, "There is no good evidence at this point that HIFU can effectively cure prostate cancer without significant side effects."

The US has not approved it because why....because of lack of evidence and research proving the claims of cure and side affects.

Randy in Indy

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

From the NY Times, January 18, 2008

Despite Doubts, Cancer Therapy Draws Patients
By STEPHANIE SAUL
PUERTO VALLARTA, Mexico — Some weekends, more than a dozen American men wait at beachfront hotels, anxious for their turns in the treatment room at a small private hospital here.

They are medical tourists with prostate cancer. And they are queued up for the latest therapy — one advertised with pictures of couples strolling on the beach and pitched as a way to treat the patients’ disease while preserving their sex lives.

The treatment is called high-intensity focused ultrasound, or HIFU (pronounced HIGH-foo). And instead of using surgery or radiation, it attacks the cancerous tissue by heating the prostate to temperatures near boiling.

Tropical beaches aside, there is a reason that hundreds of American men have traveled out of the country to receive HIFU. It is not approved in the United States. And its growing popularity has some cancer experts voicing caution. They argue that there is not yet enough evidence that the treatment stops cancer over the long run and they say the side effects are not as minimal as described by US HIFU, the company sponsoring the offshore treatment weekends.

The company is attracting attention for its aggressive recruitment of American doctors who will go through training and perform the treatments. The company charges patients $25,000 to $30,000, a fee that is usually not reimbursed by insurance. Of that, the company pays the doctors $5,000 to $7,500 — several times what physicians earn for conventional prostate cancer procedures in the United States.

Critics worry that financial motives might influence medical decisions.

“The people doing the treatments down there, they’re just printing money,” said Dr. Thomas A. Gardner, an Indiana University School of Medicine urologist who has been involved in clinical studies of HIFU and who, despite his concerns, is enthusiastic about its potential. “Anytime anyone’s printing money, doing what’s right for the patient gets a little blurry.”

But Dr. George M. Suarez, medical director of US HIFU, which is based in Charlotte, N.C., defends the company’s fees, which are less than the cost of some other prostate cancer treatments. And he says he recommends the treatment because he believes that it works as well as surgery or radiation, with fewer side effects.

Nearly a quarter-million cases of prostate cancer are diagnosed in American men each year, and newer detection methods and increased vigilance mean that more cases can be caught while the disease is still curable.

Even earlier detection is expected with the advent of new genetic tests, like one announced Wednesday, that can identify which men are at high risk. Despite such advances, though, doctors still cannot predict which cases of cancer will spread. And so most cases are treated, even though most prostate cancer is slow-growing and in many cases would be harmless if left alone.

The company says it has treated more than 1,000 men in its centers since 2004. Stephen R. Puckett Sr., the company’s chairman, said that those patients “should have the right to choose their medical treatment and to choose where to have it.”

One of those patients is Gary Crissman, 54, a manufacturer’s representative from Pittsburgh, who was among five Americans treated at the small private hospital here one weekend in December.

Mr. Crissman said he had considered surgery and radiation, but worried about the common side effects of both — sexual impotence and urinary incontinence.

“I didn’t want to have the problem of potentially leaking, and I didn’t want to have the problem of erectile dysfunction,” said Mr. Crissman. Afterward, he said, his procedure was such a pain-free “breeze” that he celebrated with a Mexican buffet dinner in his hotel’s restaurant.

Positive patient testimonials can be found on the company’s Web site, which also lists the company’s treatment sites elsewhere in Latin America and the Caribbean and affiliates in Canada.

Not every customer has a good experience, though.

“The US HIFU site makes it all sound rosy; they give you none of the side effects and none of the bad results,” said Fred Gillick, a Park Ridge, Ill., real estate executive who received the treatment here in April 2006.

Mr. Gillick, 69, says the procedure left him impotent and he must wear a catheter at all times. Worse yet, he said, the treatment did not eliminate his cancer.

“Guys, there’s a reason HIFU isn’t approved here,” Mr. Gillick said in a Web posting on a cancer support site.

Even patients whose testimonials appear on the company’s Web site do not always have good outcomes.

Charles A. Reinwald of Tequesta, Fla., said Dr. Suarez treated him in the Dominican Republic in June 2004. Mr. Reinwald’s statement on the site, written a short time later, applauded HIFU for what he said were minimal side effects.

But three and a half years later, Mr. Reinwald, now 82, said in an interview that his cancer was not cured. Still, Mr. Reinwald, a retired lawyer who is the founder of the Cancer Cure Coalition, an organization seeking new cancer treatments, said that HIFU should remain available and that he had not asked the Web company to remove his testimonial.

The company declined to discuss individual cases.

Dr. Suarez, who is also an owner of the company, said he set up a HIFU machine in the Dominican Republic five years ago after learning about the technology at a urology conference. That led to the formation of the company with Mr. Puckett, who previously founded the MedCath Corporation, a national chain of cardiovascular specialty hospitals.

Although the company’s international treatment sites are outside the jurisdiction of the Food and Drug Administration, the company is sponsoring F.D.A.- approved clinical studies in the United States geared toward getting approval of the therapy. The treatment is approved in the European Union and Canada, where some American men have also traveled for treatment at centers operated by various providers. But there is skepticism among leading American doctors, as well as the American Urological Association, which has said there is too little long-term data to evaluate HIFU.

The head of the prostate cancer program at Memorial Sloan-Kettering Cancer Center, Dr. Peter T. Scardino, said the procedure might prove useful for some special cases, but “for the treatment of the average ordinary prostate cancer, I think it’s a second-class form of therapy.”

Dr. Scardino is among prostate cancer experts concerned that when HIFU treatment preserves sexual potency, it is not eradicating the cancer.

The primary treatments for prostate cancer have an impotence rate approaching 50 percent, as well as a lesser risk of urinary incontinence. Dr. Suarez and Dr. Stephen Scionti, who performs many of the company’s HIFU procedures in Puerto Vallarta, said that they could reduce impotence rates to the single digits.

But some doctors are skeptical of those figures.

Dr. Cary N. Robertson, a Duke urologist who has studied HIFU, said published research suggested that up to 50 percent of patients who undergo the therapy might lose all or part of their sexual function.

The company says that improvements in the equipment since those studies were completed have reduced impotence rates. There are also questions about whether HIFU’s long-term cancer cure rates are as high as those with standard therapies.

Citing a shortage of long-term data on the procedure, Dr. Scionti, who is based in Hilton Head Island, S.C., acknowledged, “We don’t know what the results are in 10 or 15 years.”

In the treatments done in Puerto Vallarta, after patients are sedated and given spinal epidurals, they lie on a surgical table with their legs in stirrups. The treatment is delivered through a probe inserted into the rectum.

During the treatment, doctors monitor a video screen image of the prostate. Because each dose of highly focused ultrasound is delivered in short spurts to small areas, it can take several hours. Mr. Crissman, the patient who described the procedure as “a breeze,” said the only discomfort was the catheter, inserted directly into his bladder through an incision below his navel, that all patients wear for about two weeks.

“Let’s say they didn’t get all of it,” he said. “The procedure can be redone if necessary. At a later day, I still have the options of surgery or radiation.”

In a telephone interview three weeks after the procedure, Mr. Crissman described his condition as so far, so good. “Everything works,” he said.

Trew
Posts: 891
Joined: Jan 2010

That is the case. At Loma Linda, sitting in the proton department I listened to a man tell us other men how his urologist- a sergeon- told him as plain as plain can be- if you get proton therapy you will never be a patient of mine again." the man said he shook the doc's hand and walked out the door and was at LLU within the week getting proton therapy.

Surgeons like surgery!

You read Robert Marckini's book on PC and he tells of visiting a number of doctors- each one insisting his method was the best. In the end, pick the method that best supports your lifestyle and life goals and go for it.

Recurrance? There is lots of recurrance with surgery, too. I had surgery and I am in the group with a good probablity of recurrance. So don't let the thought of recurrance frigthen you into surgery.

I wish you well.

Trew
Posts: 891
Joined: Jan 2010

...is a BIG deal.

the.wife
Posts: 20
Joined: Oct 2009

I can't thank hopeful, trew, lewino enough for the welcome. I had read men asking why women were here, that they don't go to breast cancer forums, but with breast cancer there aren't so many decisions or side effects to deal with and it's us wives who will be baring any side effects just as much as the men.....I really can't bare the possibility of the depression, like was said above. This HIFU may be new, but isn't newer usually better? I am counting on it.

Thank you again, you made my day. I don't know about your situation, I haven't read enough, I really wish you all the best, and a whole bunch of luck.

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lewvino
Posts: 1004
Joined: May 2009

Hi...I'm 7 months post davinci surgery, age 55. Gleason was 4+3 (7) pre surgery,,,changed to 3+3 (7) post surgery. Had one positive margin at pathology time post surgery so keeping an eye on things by frequent PSA checks. Have been 99.9% Dry since the cath came out and having success with Levitra. I live in Tennessee.

Larry (lewvino)

the.wife
Posts: 20
Joined: Oct 2009

so surgery didn't work at all for you?? terrible, devastating, I feel terrible for you. But I don't understand all the technical stuff, if I was you I'd be popping capsacian pills, as I hear they do keep a check on the PSA growth.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

You must not read many posts here. Larry feels real good about the surgery....Do you understand what a positive Margin is and how that happens? Better do some research.

Randy in Indy

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

Were you responding to me or to TREW? I've done great as most men do with the surgery.
Trew had a Gleason 9 which is bad news to begin with and has had follow up radiation.
Mine was a gleaon 7 (rated borderline aggressive) Hifu docs didn't thing it would help me.
Post surgery the pathology report showed cancer to the very edge of the specimen. Which means there may or may not be some cancer left. If they cut to far then you have other problems. I was told to think of it as lightning striking a tree. The tree dies and stuff around it dies.

Surgery took out the majority of my cancer (Maybe all we just don't know) If any was left then it might die or it might real its ugly little head again. But if I have a problem (Being checked frequently on PSA) Then I can have radiation for a backup plan.

If I did HIFU First then what would be my backup plan?

I had looked at Seed implants before surgery and that Doc only gave me a 56% chance of being cancer free in 10 years. I believe with Surgery I have a better chance even with a positive margin.

That is why each person has to decide their plan of attack for this cancer.

Larry

the.wife
Posts: 20
Joined: Oct 2009

True, I really know very little about this cancer, but reading that Larry said his gleason was "changed to 3+3 (7) post surgery" sounds like he still has it. Hold on, how does 3+3=7 ?

If you did HIFU your back up plan would be anything out there, ultrasound doesn't mean you can't do surgery or radiation or more HIFU, if it fails the first go. HIFU can kill cancer outside the gland. Did you talk to a real qualified HIFU doc Larry, or just a regular urologist?

Anyone who understands all of it is spending too much time being consumed by it, unless they are getting paid!

If you just don't know Larry, then think it's all gone until they prove otherwise.

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I think HIFU gal got removed from this site...OOPS...Now everyone is wondering the same thing.

Randy in Indy

the.wife
Posts: 20
Joined: Oct 2009

Randy, I’m no reinvention, but I’ll get lost, and be back in 6 weeks after my sweeties treatment, as I know you must want to know about a new treatment that has less side effects - so you can inform men, if it goes poorly I’ll be back in that case as well, I am only about the truth. It’s sad this is the only way we can find out about HIFU, as my doc was a creep, he wouldn’t have ever told me.

I certainly don’t know that much about PC, but I know enough to give my sweetie the treatment with the best odds of working and no side effects.

Good luck guys, stay away from Randy in Indy selling surgery, the old fashioned way to get PC. Trew was right on, why take the chance of surgery?

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

The.wife Not sure what you mean by staying away from Randy....He gives solid advice from his experience and Surgery is not old fashioned...DaVinci is very state of the art for surgery. Why take the chance of surgery you ask? Any treatment carries a risk....have you even looked at the risks associated with HIFU? Here are just a few that I found with a quick internet search:

From...www.hifumedicalcenter.com/WhatisHiFu/PossibleSideEffects/tabid/81/Default.aspx

The side effect profile potential for complications exist with high-intensity ultrasound as it does with every prostate cancer treatment. Some patients will experience urinary urgency and mild discomfort lasting one to four weeks. A urinary strictures may occur in up to eighteen percent of the patients with retention in 0.6 percent. Erectile dysfunction is found in 20 percent unless nerve sparing is elected. A rectal fistula has been reported in one percent...

from: www.cancerhelp.org.uk/type/prostate-cancer/treatment/high-intensity-focused-ultrasound-for-prostate-cancer:
the most common problems reported after HIFU were infections in the prostate area and incontinence.

From: www.prostate-cancer.org.uk/info/prostate_cancer/treatment_hifu.asp#6
Sexual problems
Studies show different figures for the number of men who find it difficult to get an erection after HIFU treatment. The number of men affected may be as low as one in five (20 per cent) or as high as four in five (77 per cent). However, these figures are no worse than for radical prostatectomy or radiotherapy 3.

Again we all wish you and your 'sweetie' the best in your battle. Just remember to read the facts.

Randy...Keep giving the advice...Each person has to weigh the risks and then decide. Hifu is not for everyone as you know!

Larry

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

I have already posted this before but just to be certain. I do not wish any harm on anyone...ever. Additionally, I sure hope everyone fighting this peculiar beast can find first the cure and second the aftermath that they can live with and be happy about their choice. I always call it like I see it...and usually I would like to think I am right...but sometimes like everything in life people can be wrong with their judgements made....If I was not right in this case then I apoligize...and my bad. But having said that I do believe there has been enough information with links posted here by Kongo, Maria, Larry and to most certainly without one shred of doubt cast a caution for ANYONE considering HIFU as to the ultimate goal of A.) getting a CURE for cancer and even B.) having minimal side effects. And again I stand here today post surgery as many men (not all) but many who have excellent results in both continence and sexual function. So wife..I really do wish you and expecially your husband the cure and least amount of side effects...but for me.... the evidence researched and presented to me would not have HIFU as my choice treatment.

Have a great day!

Randy in Indy

hopeful and opt...
Posts: 1293
Joined: Apr 2009

You are doing fine.....a note is not required....I don't have any problems with your posts,in fact most of them are pretty good, and I've been reading them since you started posting here.........Is it possible that wife is a disruptive force, who formally posted here under a different name about HIFU, driving everybody nuts......i'm not saying yes or no....I just wonder.

Ira

randy_in_indy's picture
randy_in_indy
Posts: 493
Joined: Oct 2009

about 3 or 4 posts.

LOL

Randy in indy

lewvino's picture
lewvino
Posts: 1004
Joined: May 2009

The.wife...If I said 3+3 7 Post surgery that is a typo It was 3+4 7 Post surgery. What that means is .....At Biopsy time pre surgery they took 12 samples and graded as 4+3 7 from the samples. After Surgery they have the entire PROSTATE To grade and changed it to 3+4 7 for the overall. That does not mean that I still have cancer. That was the final Gleason Score.

Yes I talked to A Qualified HIFU Doc. I don't recall his name but he did his procedures off shore in the Bahamas. I actually talked to them 3 times and read all there reserach.

Don't forget that with Proton, HIFU or radiation scar tissue will be preformed which makes follow up surgery more difficult.

Larry

hopeful and opt...
Posts: 1293
Joined: Apr 2009

The other day I spoke with a surgeon , who told me that UCLA is doing a hifu trial for men with more advanced disease......this surgeon think that hifu might be good for men in that category.

Ira

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

The HIFU trials in the US are only for those who have failed radiation tx.

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