So what about HIFU????

mrshisname

Evagirl said:

what about the risk of............

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???

yes, we've heard that too
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).

mrshisname

the.wife said:

Yes, I am the wife of a man
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…..

glad to hear
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.

randy_in_indy

mrshisname said:

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

Maria
YOu are exactly correct. In fact anyone can call HIFU international and ask them this question.

HOw can I get HIFU done in USA?

The answer is you must have failed in seed implants and still have cancer in the prostate..

Along with having to have a prostate of specific grams or less. I believe you cannot have had a palpable nodgle either..but that could be wrong...anyway...call them and ask...I did when I was searching out my choice of what to do. In fact here is their number at HIFU International.

1-866-553-1629 to speak with someone today to find out if you qualify.

I talked for over an hour with a "nurse" who led me through the results section of their website.. http://www.internationalhifu.com/

I wish the very best to everyone facing this beast....I pray you find the cure with the fewest life quality side effects.

Randy in Indy

mrshisname

randy_in_indy said:

Maria
YOu are exactly correct. In fact anyone can call HIFU international and ask them this question.

HOw can I get HIFU done in USA?

The answer is you must have failed in seed implants and still have cancer in the prostate..

Along with having to have a prostate of specific grams or less. I believe you cannot have had a palpable nodgle either..but that could be wrong...anyway...call them and ask...I did when I was searching out my choice of what to do. In fact here is their number at HIFU International.

1-866-553-1629 to speak with someone today to find out if you qualify.

I talked for over an hour with a "nurse" who led me through the results section of their website.. http://www.internationalhifu.com/

I wish the very best to everyone facing this beast....I pray you find the cure with the fewest life quality side effects.

Randy in Indy

AMEN!
It is in fact, a beast, and a beast and a bear of a decision. It stinks!

hopeful and optimistic

mrshisname said:

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

INtersting,
I didn't know that........I guess that you did some research....can you let me know the source? .............thanks.............Ira

the.wife

mrshisname said:

sure hope it is not with Suarez
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...

I got to thinking this
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.

randy_in_indy

hopeful and optimistic said:

INtersting,
I didn't know that........I guess that you did some research....can you let me know the source? .............thanks.............Ira

Ira is your question about research to me.
I think I clearly stated I called HIFU internation and talked to a nurse...actually they called me back as I filled out the form with my info and a nurse called me back...one that was on a team going to either bahamas or cancun. The male nurse who called me told me that the only way a person could get HIFU done in the USA via a trial was if they were brachytheraphy failures - I posted the number anyone is free to call them and ask that same question I did.

randy in indy

hopeful and optimistic

randy_in_indy said:

Ira is your question about research to me.
I think I clearly stated I called HIFU internation and talked to a nurse...actually they called me back as I filled out the form with my info and a nurse called me back...one that was on a team going to either bahamas or cancun. The male nurse who called me told me that the only way a person could get HIFU done in the USA via a trial was if they were brachytheraphy failures - I posted the number anyone is free to call them and ask that same question I did.

randy in indy

Hi Randy
You answered the question.......I guess when I heard a lecture about ucla doing HIFU for intermediate prostate cancer, I didn't hear anything about it being a second choice, so I was questioning....( I think that for some reason I was directing the question at maria. )

Anyway Thanks

Ira

mrshisname

the.wife said:

I got to thinking this
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.

THE Wife
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??

mrshisname

Hoosierdaddy said:

HIFU
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.

also
also

the.wife

mrshisname said:

THE Wife
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??

I phoned International HIFU
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

the.wife said:

Swing shift,
I found the
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.

Incontinence....
...is a BIG deal.

Trew

the.wife said:

I phoned International HIFU
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.

　

To the.wife
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

the.wife said:

I phoned International HIFU
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.

　

I'm also glad to hear the
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

Trew

the.wife said:

I got to thinking this
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.

Surgeons Like Surgery
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.

the.wife

Trew said:

Incontinence....
...is a BIG deal.

I can't thank hopeful, trew,
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.

lewvino

the.wife said:

I can't thank hopeful, trew,
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.

Hi...I'm 7 months post
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

lewvino said:

Hi...I'm 7 months post
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)

oh my gosh
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.

the.wife

the.wife said:

I phoned International HIFU
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.

　

Dr. Suarez is the HIFU father in the U.S.
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.

randy_in_indy

the.wife said:

oh my gosh
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.

Wife
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