Has any one tried or researched HIFU or CyberKnife for treating Prostate Cancer?

Mitch128

HIFUgal said:

I am down in Mexico right
I am down in Mexico right now on vacation, in Puerto Vallarta where my husband had HIFU. I have learned that there are several doctors who treat men with prostate cancer here with HIFU, Mexican doctors. I met Dr. Garcia who learned from my husband's doctor, Dr. Scionti, Dr. Garcia is a wonderful man, you won't know you are "out of the country", and he only charges $12,000. Find him at HIFU + MX
HIFU is all over Mexico now, just like every country on earth ~ except the good ole USA (they call us The United Slaves of America).

Need help understanding total costs involved with HIFU
HIFUgal reported "I met Dr. Garcia who learned from my husband's doctor, Dr. Scionti, Dr. Garcia is a wonderful man, you won't know you are "out of the country, and he only charges $12,000." This sounds much more reasonable than the $25,000 or so associated with Dr. Scionti for the same procedure.

Can anyone comment on this disparity (Garcia versus Scionti only?) and/or any other pertinent info such as the cost of hotels, food, transportation hassles, personal saftey, length of stay, time it takes to get a passport, incidentals, etc.

I've not been in touch with any HIFU organization at the moment - should know Friday, yes or no, if PCa has progressed to bones. If the answer is No, then I'll start moving forward without delay.

Thanks,

Mitch

Ralphie62

LBlanks said:

Still Under Study...
From what I've read, HIFU is still under study and is at least two years away from "standard practice".

I have a friend that underwent this procedure on an experimental basis and is doing well. Actually, it was done at no cost to him and he ever got a check from the research team doing the procedure.

HIFU
I'm newly diagnosed and exploring treatments....could you tell me where your friend participated in this experiment?? cost will be an issue for me.....also, I'm considering davinci...I would like to correspond with people from Georgia for surgeons and outcomes.

mrshisname

HIFUgal said:

Have I been accused of
Have I been accused of "marketing"? Low blow, as I am just a wife of a guy who underwent HIFU, he had no pain, no problems, and I try to spend my free time letting people know that there is another option for PCa. All I want to do is help stop the misery caused by other treatments. HIFU is the future, but our for money system is not happy about this new treatment as it will severly reduce the profit and money in cancer. The rest of the world enjoys more freedom than we do.

My husband wasn't eligible for the clinical trials, and I am glad of that, because the clinical trials doctos don't have the experience that our doctor had, 6 years of HIFU treatments.

Here's a report on Sky News (a news channel the rest of the world gets, but not us):

http://www.youtube.com/watch?v=1zxH7P9WjIw

I didn't understand your FYI, what clinical trial were you looking at? I understand the Japanese have put out their results and 86% of HIFU patients were cured at 5 years, I keep the thought that that data is 10 years old, so they were just learning, I'm betting the data now is closer to what International HIFU sees, 94% cured. I'm guessing the 6% had cancer outside the gland area and it wasn't spotted.

HIFU gal
Hello, I have a question for you.
Do you have a background in the medical field?
Because some of the comments you make border on giving medical advice.
I'm a registered nurse, and I am very careful about even sounding like I am giving medical advice, which is illegal.
I think you should be more careful telling people they 'qualify', or other opinions on their situation. That is best left to the medical professionals.
I don't mean to offend you, because you do sound like you are trying to be helpful, but giving your opinion on a medical situation when you are not a trained professional may in fact, do more harm than good.

bdhilton

mrshisname said:

HIFU gal
Hello, I have a question for you.
Do you have a background in the medical field?
Because some of the comments you make border on giving medical advice.
I'm a registered nurse, and I am very careful about even sounding like I am giving medical advice, which is illegal.
I think you should be more careful telling people they 'qualify', or other opinions on their situation. That is best left to the medical professionals.
I don't mean to offend you, because you do sound like you are trying to be helpful, but giving your opinion on a medical situation when you are not a trained professional may in fact, do more harm than good.

All I can do is smile :-)
You think so :-)?

mrshisname

2x4don said:

my experience re: recent Davicci prostatectomy and research
I was diagnosed with early stage of prostate cancer on 9-1-09 on one side of my prostate, after trailing my psa, which had elevated from 2 about ten years ago, to 35 and having taken 5 biopsies over the years, having skipped having a biopsy on 08, as Dr. said I must
just have a psa "leak" and they would have found cancer with all the biopsies.

I met with a couple of other doctors whos did open prostatectomys, but the most enfluential advice I received was, a friend of the family who is a radiologist had chosen to have the davicci operation at the advice of his urologist friend, to be done at the Vanderbilt hospital in Nashville, Not a very good experience in comparison to my Davicci operation at the bathesda North hospital in Cinn. Ohio. I chose Dr Delworth in the area, because my son sells Laprascopic equipment and the supervisor in Cincinatti said Delworth was quite noted, having done about 750 davicci operations and he was only 80 miles from me, rather than 250 to Vanderbilt.

My Dr friend had considerable bleeding, etrocious diarhea and wasn't allowed to stay but one day, in a mash like atmosphere, having to stay in a motel a day or two in case there might be problems, wife had to sleep in a chair. In contrast, I was allowed to stay four days, due to my not passing gas or otherwise and they allowed my wife to sleep in the bed next to me, I was very happy with the care and accomodations.

I had no bleeding in my urine and the incisions have been so comfortable I kiddingly accused Dr Delworth of not removing the prostate.

I have had a small hemorriod and rectal soreness, but the stomach soreness went down fast over a week or two, but I was pretty mobile and walked at will. I'm six weeks post op and felling good except for:

My incontinese is of concern, but it seems to be improving a little daily, but I'm a bit frustrated, expecially as it gets worse the later in the day. I do pretty good lieing or sitting, but I leak worse when i stand. I get a bit irritated in the urethra in the penis when it seems to inhibit the penis utrethra too long, maybe an hour or so?

I havn't had an erection, but one ejaculation, emitting only "dust and smoke", but I havn't bought the vacuum pump yet, I tend to not be allowed to play with toys I may hurt myself with, but I think It may my permitted in about 6 to 8 weeks. I may be too preoccupied with piss to think beyond that?

I was fortunate to have a rediologist at Central Babtist Hospital in Lexinton, Ky, near my home spend two hours discussing the laser knife and other radiation treatments, and the end conclusion was that for my level of cancer about 7 whatever its called, I would be better off if removed surgically and if i might need radiation additionally, it could be done. But, if you do radiation first, you can't operate very well after radiation.

I suppose I could write a week on this ordeal, but I'll "zip it" for now, but would be glad to answer any questions.

ps.
I am 67 years old and in perfect health except i'm a type two diabetic with an a1c of 6.

2x4Don
Hi Don, Just wanted to chime in, my hubbie was just diagnosed, we are from the Louisville Kentucky area.
I had 2 recent surgeries at Bethesda North myself. Excellent staff and care. My last was 4 weeks ago and I am recovering nicely (partial bowel obstruction from adhesions).
How long did it take you to get in to see your particular surgeon? We are getting 2 other opinions but the fact you had surgery at Bethesda North intrigued me, having been there so recently myself.

randy_in_indy

bdhilton said:

All I can do is smile :-)
You think so :-)?

bd, LOL
The truth usually has a way of finding it's way to the surface, it's just a matter of time.

HIFUgal

randy_in_indy said:

bd, LOL
The truth usually has a way of finding it's way to the surface, it's just a matter of time.

"bumped" means it was
"bumped" means it was brought to the top of the pile, for your reading.

No, no medical training at all. I got info on HIFU from a friend. It was a total God send for us, and so I want to pass along what I've learned. I read about it all the time, and so I have learned alot, and there are people who have had HIFU that I stay in touch with and they tell me what they learned.

Giving advice on a forum is not illegal, as there is a disclaimer at the bottom of this page, everyone knows we are just trying to help based on our experience, if I was a MD I'd certainly say so.

When I say someone is qualified - it's totally based on thier stats. BTW, I say all the time to call International HIFU and ask if you qualify, there is a doctor on Facebook who says someday surgery and radiation will be in the Smithsonian. I wish HIFU was covered by insurance here. It would be the cheapest cure, especially in the long run....based on my husband and our friends who have also had it.

randy_in_indy

HIFUgal said:

"bumped" means it was
"bumped" means it was brought to the top of the pile, for your reading.

No, no medical training at all. I got info on HIFU from a friend. It was a total God send for us, and so I want to pass along what I've learned. I read about it all the time, and so I have learned alot, and there are people who have had HIFU that I stay in touch with and they tell me what they learned.

Giving advice on a forum is not illegal, as there is a disclaimer at the bottom of this page, everyone knows we are just trying to help based on our experience, if I was a MD I'd certainly say so.

When I say someone is qualified - it's totally based on thier stats. BTW, I say all the time to call International HIFU and ask if you qualify, there is a doctor on Facebook who says someday surgery and radiation will be in the Smithsonian. I wish HIFU was covered by insurance here. It would be the cheapest cure, especially in the long run....based on my husband and our friends who have also had it.

Here's something to ponder
Where are all those patients who have had HIFU....why have they not been here first..posted and then come back to comment on the experience. Why is Hifu gal the only one....why? Something to ponder.


Randy in Indy - just a guy that had a nodgle - cancer in 3 samples of 8....even some grade 5 in the post op path....yet now...60 days following robotic...95% continent and usuable erections....Im real...I'm posting here...I can tell you what I am not doing...I am not posting on a breast cancer board about what will work for women that have breast cancer because of the personal experience that I have had with that with several people in my life....hmmmm HIFU gal...how long are you going to post here...and what is your ultimate goal on this forum. Oh and where is your husband...is he real...will he ever join the fun and post? Enquiring minds want to know.....well ok...just me. LOL

lewvino

randy_in_indy said:

Here's something to ponder
Where are all those patients who have had HIFU....why have they not been here first..posted and then come back to comment on the experience. Why is Hifu gal the only one....why? Something to ponder.


Randy in Indy - just a guy that had a nodgle - cancer in 3 samples of 8....even some grade 5 in the post op path....yet now...60 days following robotic...95% continent and usuable erections....Im real...I'm posting here...I can tell you what I am not doing...I am not posting on a breast cancer board about what will work for women that have breast cancer because of the personal experience that I have had with that with several people in my life....hmmmm HIFU gal...how long are you going to post here...and what is your ultimate goal on this forum. Oh and where is your husband...is he real...will he ever join the fun and post? Enquiring minds want to know.....well ok...just me. LOL

Interesting Question you
Interesting Question you raise randy....When I researched all my options for treatment I did researh hifu. I did not want to start asking questions later saying why did I not research such and such treatment. I received and read literature on Hifu, Spoke to a technician and a Doctor that did the Hifu treatments I believe in the Bahama's. I'm not against it but just felt that I wasn't getting the answers I needed or that it would work for me. As we all find out when fighting this battle there are SO MANY VARIABLES in each persons case. Along with that I could not justify paying 20,000 - 30,000 out of Pocket for the hifu treatments. I know they state some insurance companies cover it but the bottom line is It's not recognized in the USA and insurance being the way it is they paying anything they can.

Larry

HIFUgal

lewvino said:

Interesting Question you
Interesting Question you raise randy....When I researched all my options for treatment I did researh hifu. I did not want to start asking questions later saying why did I not research such and such treatment. I received and read literature on Hifu, Spoke to a technician and a Doctor that did the Hifu treatments I believe in the Bahama's. I'm not against it but just felt that I wasn't getting the answers I needed or that it would work for me. As we all find out when fighting this battle there are SO MANY VARIABLES in each persons case. Along with that I could not justify paying 20,000 - 30,000 out of Pocket for the hifu treatments. I know they state some insurance companies cover it but the bottom line is It's not recognized in the USA and insurance being the way it is they paying anything they can.

Larry

Where are the men who had
Where are the men who had HIFU? guess they don't enjoy a fight. My husband has no interest in forums, he reads books in his spare at home time, hardly even answers his friends emails, he has said that forums are notorious for rude behavior. Our friends still work, ski instructors, store owners, they tell all the people they meet about HIFU, but aren't interested in spending their time on forums. Every one of them has sent in someone....and all are happy. HIFU shouldn't be confined to a rich man's option.

When I first posted my husband's experience my post was erased and I was banned, at 5 different forums. That was well over a year ago, they didn't allow the topic, they wanted to keep this information from you. My husband was treated in 2008 but I couldn't write here until Sept. of 2009.

Yes, where are they? Men are different, they aren't care givers, or, like my husband - they do it in a different way. Besides, it seems that people with good stories don't come here, people come here to find answers to their problems, after HIFU life is normal.

If my husband read the posts you guys send my way he'd throw the computer out the window.

What is my goal? To make sure everyone (rich and poor) know about HIFU so that the FDA cannot drag its feet anymore, that they are honest and give HIFU approval ~ after all ~ no treatment is FDA approved for prostate cancer....my goal is to stop the misery.

HIFUgal

HIFUgal said:

Where are the men who had
Where are the men who had HIFU? guess they don't enjoy a fight. My husband has no interest in forums, he reads books in his spare at home time, hardly even answers his friends emails, he has said that forums are notorious for rude behavior. Our friends still work, ski instructors, store owners, they tell all the people they meet about HIFU, but aren't interested in spending their time on forums. Every one of them has sent in someone....and all are happy. HIFU shouldn't be confined to a rich man's option.

When I first posted my husband's experience my post was erased and I was banned, at 5 different forums. That was well over a year ago, they didn't allow the topic, they wanted to keep this information from you. My husband was treated in 2008 but I couldn't write here until Sept. of 2009.

Yes, where are they? Men are different, they aren't care givers, or, like my husband - they do it in a different way. Besides, it seems that people with good stories don't come here, people come here to find answers to their problems, after HIFU life is normal.

If my husband read the posts you guys send my way he'd throw the computer out the window.

What is my goal? To make sure everyone (rich and poor) know about HIFU so that the FDA cannot drag its feet anymore, that they are honest and give HIFU approval ~ after all ~ no treatment is FDA approved for prostate cancer....my goal is to stop the misery.

Here they are
I found a group of people who had HIFU:

http://www.cancercompass.com/message-board/message/all,39623,0.htm?mid=287015#287015

luckyman2

HIFUgal said:

Where are the men who had
Where are the men who had HIFU? guess they don't enjoy a fight. My husband has no interest in forums, he reads books in his spare at home time, hardly even answers his friends emails, he has said that forums are notorious for rude behavior. Our friends still work, ski instructors, store owners, they tell all the people they meet about HIFU, but aren't interested in spending their time on forums. Every one of them has sent in someone....and all are happy. HIFU shouldn't be confined to a rich man's option.

When I first posted my husband's experience my post was erased and I was banned, at 5 different forums. That was well over a year ago, they didn't allow the topic, they wanted to keep this information from you. My husband was treated in 2008 but I couldn't write here until Sept. of 2009.

Yes, where are they? Men are different, they aren't care givers, or, like my husband - they do it in a different way. Besides, it seems that people with good stories don't come here, people come here to find answers to their problems, after HIFU life is normal.

If my husband read the posts you guys send my way he'd throw the computer out the window.

What is my goal? To make sure everyone (rich and poor) know about HIFU so that the FDA cannot drag its feet anymore, that they are honest and give HIFU approval ~ after all ~ no treatment is FDA approved for prostate cancer....my goal is to stop the misery.

What is your real goal?
HIFUgal, I live in Canada where HIFU has been approved for years, but it is still not covered by our provincial medicare systems and costs about $25,000. I seriously considered HIFU and was certainly able to afford the fee when I was diagnosed with PC. However, I opted for laparoscopy surgery and I am happy with the results. The jury is still out on the long-term effectiveness of HIFU.

You say you've been banned from this site. Consider this: Unfortunately some of these sites have been infiltrated with people promoting their own agenda (those who work for, or actually own a HIFU clinic). You come across as one of these people because you seem to bring up HIFU in just about every discussion, including those not even closely related to the HIFU topic. We could be discussing the anatomy of a ping pong ball during mating season and there you are again, pushing HIFU.

So, what is your real goal on this site? Who are you really? And if you are not a spammer, tell your husband to find his balls and get on this site and speak for himself... he supposedly went through the HIFU treament, not you.

HIFUgal

luckyman2 said:

What is your real goal?
HIFUgal, I live in Canada where HIFU has been approved for years, but it is still not covered by our provincial medicare systems and costs about $25,000. I seriously considered HIFU and was certainly able to afford the fee when I was diagnosed with PC. However, I opted for laparoscopy surgery and I am happy with the results. The jury is still out on the long-term effectiveness of HIFU.

You say you've been banned from this site. Consider this: Unfortunately some of these sites have been infiltrated with people promoting their own agenda (those who work for, or actually own a HIFU clinic). You come across as one of these people because you seem to bring up HIFU in just about every discussion, including those not even closely related to the HIFU topic. We could be discussing the anatomy of a ping pong ball during mating season and there you are again, pushing HIFU.

So, what is your real goal on this site? Who are you really? And if you are not a spammer, tell your husband to find his balls and get on this site and speak for himself... he supposedly went through the HIFU treament, not you.

I don't work for anyone.
I don't work for anyone.

I wasn't banned from here, I didn't find this site until later. What are long term results with surgery? or radiation? So far HIFU stacks up better, according to results from Dr. Uchilda in Japan and Dr. Emberton in the UK.

The AMA tells insurance companies what to cover, same in Canada, there's no money in HIFU if it's approved.

Besides what I've already said, I want HIFU approved so that we can move on to killing breast cancer with HIFU, as they are doing in Europe and Asia. I want everyone to know about HIFU. then they can chose.


Jun 16, 2009 6:27 pm US/Eastern HealthWatch: Prostate Cancer Reporting
Dr. Max Gomez NEW YORK (CBS) ― British doctors are testing a new treatment that uses the power of sound to kill prostate cancer.

They're finding high-intensity focused ultrasound, or hifu, destroys cancer cells without serious side effects.

That was important to prostate cancer patient Graham Cole. "It's a very sensitive part of the anatomy, and hifu will deal with what needs to be done and only what needs to be done."

Traditional treatments like surgery and radiation can damage healthy cells in and around the prostate leading to impotence and incontinence.

"The radical treatments that we have come with a significant amount of collateral damage," said Dr. Richard Hindley of the North Hampshire Hospital in England.

Hifu uses a probe to focus ultrasound at the prostate.

High frequency sound waves reaching 212 degrees burn cancer cells. The urinary tube that runs through the prostate and nearby nerves needed for sexual function are not damaged.

British doctors have only tested this type of hifu on 18 men.

So far it's been much more effective than traditional treatments.

Now doctors in the U.S. are planning their own studies.

"In my opinion it's the future," said Dr. Thomas Polascik of Duke University Medical Center.

Researchers said accuracy was just the type of advance they need in treating prostate cancer.

Polascik said the goal would be to find and destroy cancer cells in the prostate without damaging the rest of the prostate.

Cole's procedure took two hours and he was able to go home the very next day. His doctors are satisfied his cancer is gone.

luckyman2

HIFUgal said:

I don't work for anyone.
I don't work for anyone.

I wasn't banned from here, I didn't find this site until later. What are long term results with surgery? or radiation? So far HIFU stacks up better, according to results from Dr. Uchilda in Japan and Dr. Emberton in the UK.

The AMA tells insurance companies what to cover, same in Canada, there's no money in HIFU if it's approved.

Besides what I've already said, I want HIFU approved so that we can move on to killing breast cancer with HIFU, as they are doing in Europe and Asia. I want everyone to know about HIFU. then they can chose.


Jun 16, 2009 6:27 pm US/Eastern HealthWatch: Prostate Cancer Reporting
Dr. Max Gomez NEW YORK (CBS) ― British doctors are testing a new treatment that uses the power of sound to kill prostate cancer.

They're finding high-intensity focused ultrasound, or hifu, destroys cancer cells without serious side effects.

That was important to prostate cancer patient Graham Cole. "It's a very sensitive part of the anatomy, and hifu will deal with what needs to be done and only what needs to be done."

Traditional treatments like surgery and radiation can damage healthy cells in and around the prostate leading to impotence and incontinence.

"The radical treatments that we have come with a significant amount of collateral damage," said Dr. Richard Hindley of the North Hampshire Hospital in England.

Hifu uses a probe to focus ultrasound at the prostate.

High frequency sound waves reaching 212 degrees burn cancer cells. The urinary tube that runs through the prostate and nearby nerves needed for sexual function are not damaged.

British doctors have only tested this type of hifu on 18 men.

So far it's been much more effective than traditional treatments.

Now doctors in the U.S. are planning their own studies.

"In my opinion it's the future," said Dr. Thomas Polascik of Duke University Medical Center.

Researchers said accuracy was just the type of advance they need in treating prostate cancer.

Polascik said the goal would be to find and destroy cancer cells in the prostate without damaging the rest of the prostate.

Cole's procedure took two hours and he was able to go home the very next day. His doctors are satisfied his cancer is gone.

Get the facts right first
Sorry HIFUgal, I understood that you were banned from this particular site when you mentioned in your last post, "When I first posted my husband's experience my post was erased and I was banned, at 5 different forums". I guess they still haven't caught onto you on this particular site... (yet), especially since your latest reply appears to be an endless stream of "promo" for HIFU once again.

We already have HIFU in Canada and the AMA (or CMA) does not tell any insurance company what to cover in any of our provinces. In addition, we have "universal" medical coverage in Canada, something that your own country is pondering today (but that's a whole other topic to be debated by Americans). So, get the facts right before you write anything again about HIFU in Canada.

You say Cole's procedure took... (yada-yada-yada)... and his doctors are satisfied his cancer is gone. So are my doctors regarding my cancer without serious side effects... and I didn't have HIFU. Instead, I had the proven prostatectomy with nerve sparing.

Very important: I'm not for or against HIFU, I am just more convinced now that you are not who you say you are and that you do indeed have an ongoing conflict of interest here.

mrshisname

luckyman2 said:

Get the facts right first
Sorry HIFUgal, I understood that you were banned from this particular site when you mentioned in your last post, "When I first posted my husband's experience my post was erased and I was banned, at 5 different forums". I guess they still haven't caught onto you on this particular site... (yet), especially since your latest reply appears to be an endless stream of "promo" for HIFU once again.

We already have HIFU in Canada and the AMA (or CMA) does not tell any insurance company what to cover in any of our provinces. In addition, we have "universal" medical coverage in Canada, something that your own country is pondering today (but that's a whole other topic to be debated by Americans). So, get the facts right before you write anything again about HIFU in Canada.

You say Cole's procedure took... (yada-yada-yada)... and his doctors are satisfied his cancer is gone. So are my doctors regarding my cancer without serious side effects... and I didn't have HIFU. Instead, I had the proven prostatectomy with nerve sparing.

Very important: I'm not for or against HIFU, I am just more convinced now that you are not who you say you are and that you do indeed have an ongoing conflict of interest here.

I'd have to agree with Luckyman2
Hifu gal, you continue to come up with 'facts' that are hard to substantiate, look at luckyman2's post correcting you about what you wrote regarding Canada and HIFU: erroneous information. You come across as a salesperson, pure and simple. I read in one of your posts that you are in Puerto Vallarta quite often. Why is that? I think you work for HIFU. Or you are on some kind of retainer for bringing in patients.
I have gone to pubmed (lists medical articles from all over the world) trying to find hard statistics about HIFU, with specific data regarding Gleason scores, staging of patients, treatment details, and they are few and far between. This is the primary reason that the FDA is awaiting clinical trial results in this country before approving HIFU. More controlled studies are needed. Did you read my post about the FDA? Probably not. Read the thread,it will enlighten you.
Since you are NOT a medical professional, you probably are not aware of how clinical research is conducted in this country.
I keep thinking of all the people years ago who jumped on the Laetrile bandwagon, went to Mexico and later died because they'd refused conventional treatment for cancer. There is usually a reason why drugs and treatments go thru clinical trials. Even then, some things are missed (thalidomide, Avandia). BUT there has to be some sort of process to PROTECT the public and make sure that standards of care are established and met. Think about antibiotics. Did you know that years ago the belief was that antibiotics were the cure-all for everything? Now look at the mess with bacteria that have become drug resistant due to the over-prescription of antibiotics. We have created 'super-bugs'.
We are getting ready to go see a leading prostate cancer doctor in a few weeks. I'm interested to see what his take on HIFU is.
And contrary to your belief, and I directly quote from your posting "HIFU shouldn't be confined to a rich man's option.", unfortunately, hon, right now it IS. All the carrying on and your constant posting in totally unrelated threads trying to sell it, interrupting other people's conversations about unrelated concerns, all this jockeying by you will NOT speed up the clinical trials and the approval in the US. HIFU will likely be approved eventually, and may indeed eventually become the 'gold standard', but right now, it ISN'T. And not many people have that chunk of change to plunk down as you and your 'friends' so easily did. Someone sure is making a lot of money off HIFU right now. Maybe even you. Maybe approval is just around the corner, and the HIFU clinics are in a crunch to make as much money as they can before the window of opportunity closes. It makes sense that in these difficult economic times, patient numbers are likely down and thus people are going to the internet, to forums like this, to actively sell and recruit patients. And if you aren't working for HIFU, you sure do come across like you are.
I received the book written by a urologist called "The Big Scare: The Business of Prostate Cancer". it is quite the interesting read. My husband's urologist is going to read it. And by the way, hubbie's original urologist has gone to Cancun and observed Dr. Suarez and feels HIFU is very promising. However, he agrees with my husband and I that we are interested in the actual tissue results, know if the capsule was compromised, get the final pathology for better decision making. Do you know exactly WHERE your husband's prostate cancer was? My husband feels more comfortable knowing if he is going to need followup radiation or not.
Here is what Anthony Horan, MD wrote in the book I mentioned above. He worked in the VA system for years, where he was paid a salary and thus did not any financial interest in promoting certain therapies. His credentials are impressive. "High intensity focused ultrasound, really a form of heat, has been championed in Germany and looks reasonable, so long as the adjacent nerves and external sphincter are conserved. I do not favor it because the line between cells dead and alive is jagged and indistinct compared to the frostbite line (of cryotherapy)." Just thought I'd throw that in. This guy contends that prostate cancer is overtreated in certain populations. There is much more to the book than I can write here. But did you know that they have had excellent results simply injecting the prostate with ETHANOL? Very cheap procedure. Who knows, there is research ongoing with that, and it may even replace HIFU. OK I'm done.

erisian

mrshisname said:

I'd have to agree with Luckyman2
Hifu gal, you continue to come up with 'facts' that are hard to substantiate, look at luckyman2's post correcting you about what you wrote regarding Canada and HIFU: erroneous information. You come across as a salesperson, pure and simple. I read in one of your posts that you are in Puerto Vallarta quite often. Why is that? I think you work for HIFU. Or you are on some kind of retainer for bringing in patients.
I have gone to pubmed (lists medical articles from all over the world) trying to find hard statistics about HIFU, with specific data regarding Gleason scores, staging of patients, treatment details, and they are few and far between. This is the primary reason that the FDA is awaiting clinical trial results in this country before approving HIFU. More controlled studies are needed. Did you read my post about the FDA? Probably not. Read the thread,it will enlighten you.
Since you are NOT a medical professional, you probably are not aware of how clinical research is conducted in this country.
I keep thinking of all the people years ago who jumped on the Laetrile bandwagon, went to Mexico and later died because they'd refused conventional treatment for cancer. There is usually a reason why drugs and treatments go thru clinical trials. Even then, some things are missed (thalidomide, Avandia). BUT there has to be some sort of process to PROTECT the public and make sure that standards of care are established and met. Think about antibiotics. Did you know that years ago the belief was that antibiotics were the cure-all for everything? Now look at the mess with bacteria that have become drug resistant due to the over-prescription of antibiotics. We have created 'super-bugs'.
We are getting ready to go see a leading prostate cancer doctor in a few weeks. I'm interested to see what his take on HIFU is.
And contrary to your belief, and I directly quote from your posting "HIFU shouldn't be confined to a rich man's option.", unfortunately, hon, right now it IS. All the carrying on and your constant posting in totally unrelated threads trying to sell it, interrupting other people's conversations about unrelated concerns, all this jockeying by you will NOT speed up the clinical trials and the approval in the US. HIFU will likely be approved eventually, and may indeed eventually become the 'gold standard', but right now, it ISN'T. And not many people have that chunk of change to plunk down as you and your 'friends' so easily did. Someone sure is making a lot of money off HIFU right now. Maybe even you. Maybe approval is just around the corner, and the HIFU clinics are in a crunch to make as much money as they can before the window of opportunity closes. It makes sense that in these difficult economic times, patient numbers are likely down and thus people are going to the internet, to forums like this, to actively sell and recruit patients. And if you aren't working for HIFU, you sure do come across like you are.
I received the book written by a urologist called "The Big Scare: The Business of Prostate Cancer". it is quite the interesting read. My husband's urologist is going to read it. And by the way, hubbie's original urologist has gone to Cancun and observed Dr. Suarez and feels HIFU is very promising. However, he agrees with my husband and I that we are interested in the actual tissue results, know if the capsule was compromised, get the final pathology for better decision making. Do you know exactly WHERE your husband's prostate cancer was? My husband feels more comfortable knowing if he is going to need followup radiation or not.
Here is what Anthony Horan, MD wrote in the book I mentioned above. He worked in the VA system for years, where he was paid a salary and thus did not any financial interest in promoting certain therapies. His credentials are impressive. "High intensity focused ultrasound, really a form of heat, has been championed in Germany and looks reasonable, so long as the adjacent nerves and external sphincter are conserved. I do not favor it because the line between cells dead and alive is jagged and indistinct compared to the frostbite line (of cryotherapy)." Just thought I'd throw that in. This guy contends that prostate cancer is overtreated in certain populations. There is much more to the book than I can write here. But did you know that they have had excellent results simply injecting the prostate with ETHANOL? Very cheap procedure. Who knows, there is research ongoing with that, and it may even replace HIFU. OK I'm done.

FDA Approvals
The last I knew, the FDA wouldn't accept any studies or trials that weren't done in the US. Apparently, the rest of the world is too stupid to do things like that, in their view. It doesn't matter if a treatment has been in widespread use in Europe for a decade, or if it is backed by a ream of studies proving it safe and effective.

The FDA's motives are frequently suspect, and conflict of interest is common. They seem to be able to rapidly approve dangerous treatments if there is enough money behind them, while stalling promising treatments for no good reason, like the Provenge prostate cancer vaccine that they shot down at the last possible step last spring. Where is the public health interest in keeping a product off the market that could literally be saving thousands of lives per year (including mine, possibly), especially when there is no effective treatment for metastatic PCa available?

Docetaxel chemo is "standard of care" not because it cures metastatic PCa (it doesn't), but because in a single phase III trial it showed a small increase in median survival over the previous standard of care treatment. Provenge did the same, but was canned for silly, nit-picky reasons. Meanwhile, PCa patients are dying every day because of the myopic policies and bureaucratic foot-dragging of the FDA. So I certainly don't trust them to operate in MY best interests.

Just because HIFU (or any other treatment) is not FDA approved does not mean that it is not safe and effective. Do your own research and draw your own conclusions.

randy_in_indy

erisian said:

FDA Approvals
The last I knew, the FDA wouldn't accept any studies or trials that weren't done in the US. Apparently, the rest of the world is too stupid to do things like that, in their view. It doesn't matter if a treatment has been in widespread use in Europe for a decade, or if it is backed by a ream of studies proving it safe and effective.

The FDA's motives are frequently suspect, and conflict of interest is common. They seem to be able to rapidly approve dangerous treatments if there is enough money behind them, while stalling promising treatments for no good reason, like the Provenge prostate cancer vaccine that they shot down at the last possible step last spring. Where is the public health interest in keeping a product off the market that could literally be saving thousands of lives per year (including mine, possibly), especially when there is no effective treatment for metastatic PCa available?

Docetaxel chemo is "standard of care" not because it cures metastatic PCa (it doesn't), but because in a single phase III trial it showed a small increase in median survival over the previous standard of care treatment. Provenge did the same, but was canned for silly, nit-picky reasons. Meanwhile, PCa patients are dying every day because of the myopic policies and bureaucratic foot-dragging of the FDA. So I certainly don't trust them to operate in MY best interests.

Just because HIFU (or any other treatment) is not FDA approved does not mean that it is not safe and effective. Do your own research and draw your own conclusions.

OH YES HIFU GAL...THE MISERY
Yeah...my misery...on day 60 today I just went Sking all day in MN with my son while he was snowbaoarding...6 hours of sking...Oh In MISERY...not one pain...not one leak not one issue due to my Robotic surgery...went down Black dimonds...I'm sure not as good as Erisian..who looks very much like an extreme skier in his pic....but I can hold my own...and son just 12 this month first time on a snowboard was hiting the blue slopes at the end of the day and touched the terain park.....HIFU GAL...you have too many against you here...and have been exposed for a spammer...better just face it.

Randy_in_Indy

PS Bd...you will do fine on Bald Nome...your going in four months ...I fell once the entire day and not even close to feeling any issue...didn't leak throughout the day...Life is Great!

bdhilton

randy_in_indy said:

OH YES HIFU GAL...THE MISERY
Yeah...my misery...on day 60 today I just went Sking all day in MN with my son while he was snowbaoarding...6 hours of sking...Oh In MISERY...not one pain...not one leak not one issue due to my Robotic surgery...went down Black dimonds...I'm sure not as good as Erisian..who looks very much like an extreme skier in his pic....but I can hold my own...and son just 12 this month first time on a snowboard was hiting the blue slopes at the end of the day and touched the terain park.....HIFU GAL...you have too many against you here...and have been exposed for a spammer...better just face it.

Randy_in_Indy

PS Bd...you will do fine on Bald Nome...your going in four months ...I fell once the entire day and not even close to feeling any issue...didn't leak throughout the day...Life is Great!

Thanks for the smile
Randy...Hope I can share the same misery with my recovery…like I said awhile ago you are for sure a “poster child” for any procedure with PC…Keep up the great healing and see you on the other side of my surgery…Again, thanks for the laugh...

Btw…It is Half Dome and I forgot to mention this some ago about your brother’s goal of doing the fourteens (these are climbing the peaks in the Continental US that are over 14,000’ in elevation and 14 of them out west) …. I have done many of them already (some several times) but planning to do them all again …

Again see you all on the otherside of surgery!

randy_in_indy

bdhilton said:

Thanks for the smile
Randy...Hope I can share the same misery with my recovery…like I said awhile ago you are for sure a “poster child” for any procedure with PC…Keep up the great healing and see you on the other side of my surgery…Again, thanks for the laugh...

Btw…It is Half Dome and I forgot to mention this some ago about your brother’s goal of doing the fourteens (these are climbing the peaks in the Continental US that are over 14,000’ in elevation and 14 of them out west) …. I have done many of them already (some several times) but planning to do them all again …

Again see you all on the otherside of surgery!

I just talked to my brother - about his climbing
He has done about 30 climbs on fourteeniers...said he has done several twice so probably 25 different 14teeners and said there is 50 or more. He indicated that he would not do the top ten to twelve because it would probably end in death - too technically and some are far away - lives in Parker CO. You'll be fine, your in the best hands you be in.

I will anticipate and await your posts...post surgery.

Randy in Indy

mrshisname

erisian said:

FDA Approvals
The last I knew, the FDA wouldn't accept any studies or trials that weren't done in the US. Apparently, the rest of the world is too stupid to do things like that, in their view. It doesn't matter if a treatment has been in widespread use in Europe for a decade, or if it is backed by a ream of studies proving it safe and effective.

The FDA's motives are frequently suspect, and conflict of interest is common. They seem to be able to rapidly approve dangerous treatments if there is enough money behind them, while stalling promising treatments for no good reason, like the Provenge prostate cancer vaccine that they shot down at the last possible step last spring. Where is the public health interest in keeping a product off the market that could literally be saving thousands of lives per year (including mine, possibly), especially when there is no effective treatment for metastatic PCa available?

Docetaxel chemo is "standard of care" not because it cures metastatic PCa (it doesn't), but because in a single phase III trial it showed a small increase in median survival over the previous standard of care treatment. Provenge did the same, but was canned for silly, nit-picky reasons. Meanwhile, PCa patients are dying every day because of the myopic policies and bureaucratic foot-dragging of the FDA. So I certainly don't trust them to operate in MY best interests.

Just because HIFU (or any other treatment) is not FDA approved does not mean that it is not safe and effective. Do your own research and draw your own conclusions.

Fda approvals
Erisian, I am not naive enough to fully trust the FDA - believe me - but honestly, the sparse data I've found on HIFU is just not very thorough or very convincing. There DO need to be more studies, at least to fully convince me and many others. The data is just not there nor is it complete.