Prostate Cancer

[ohno]

I am 64 y.o., diagnosed with prostate cancer Gleason score of 3+3=6 on 5 slides.

I am thinking of going to Puerto Vallarta for the HIFU treatment, as side affects are mostly non-existant.

Anyone here~or do you know of anyone~who has had the HIFU treatment?

I'll certainly come back and report what I learn.....or experience.

[ohnoo]

I had HIFU only 6 days ago! It was a walk in the park! No pain, no recoup, no down time, just back to life ~ cancer free.

Except I had to re-register here...now I am ohnoo...?

I found a girl who told me her husband had it 7 years ago, and they have sent 6 other men to have it done, and all of them are very happy they had it done! no problems!

The FDA is so slow, but they are in clinical trials, phase 3, with a 93-94% success rate (if the cancer is outside the gland then you will fall into the 6%).

I saw a urologist from Hilton Head, North Carolina in Puerto Vallarta, Mexico for the HIIFU treatment. He brings his staff and they do the procedure in Xavier Hospital. It is a beauiful clean hospital, and Dr. Scionti and his staff are wonderful. He flies down there once a month to treat men from the USA, as it is not approved yet in the USA.

I want to scream this HIFU from the roof tops, we men shouldn't be suffering through surgery or the possible complications from surgery, when this is so easy, cheaper!, and has been done for 16 years in Europe. I recommend the Sonablade500 machine as it obliterates the entire gland, the other machine doesn't get the very bottom (which also accounts for some of the folks in the 6%).

[mrgto]

I have heard of it but only to know it exists. You said it has been in use 16 years in Europe? I think it is done in Canada too? Can you point us to a link or something with statistics on recurrence after 5, 10 or more years? This would be good information to use in comparison.

I just had a biopsy on 12/19. The Dr. was supposed to call with results on 12/24 but didn't. I can only think the worst --- if results were bad wait till after Xmas, if good he would have called. I've been researching.

PSA 1.5 - 04
1.4 - 05
1.4 - 07
4.1 - 9/08
3.3 - 12/08 Free percent 6

thanks

[ohnoo]

I have heard of it but only to know it exists. You said it has been in use 16 years in Europe? I think it is done in Canada too? Can you point us to a link or something with statistics on recurrence after 5, 10 or more years? This would be good information to use in comparison.

I just had a biopsy on 12/19. The Dr. was supposed to call with results on 12/24 but didn't. I can only think the worst --- if results were bad wait till after Xmas, if good he would have called. I've been researching.

From what I have learned I agree with you, it's bad news. As your number went up so much in one year, and also my urologist said that any number over 1. is cancer, but they don't alert you because it could be the kind that grows very slowly, so they watch and keep testing. But your free is low, that's good news, you have discovered this early on!

Yes, they do HIFU in Canada, but be sure it's Sonablade500, as I think they use Albatherm and the redo on the Albatherm is 40%, because they cannot get all the gland. The redo costs $25,000. just like the first treatment costs. Canada has been using HIFU for 5 years. Dr. Scionti is the guy who teaches all the doctors in North America how to do it. He is devoted, he has been named the guy in charge of keeping data from all the HIFU centers around the world (I found on reuters). I feel so forunate to have found him, as in all things, experience counts! He saw my nerves and spared them, I urinated normally yesterday -- so I am NOT incontinent! My urologist here told me that statistics say that 20% are incontinent after prostate surgery, but he thinks it's more like 50%, because men don't tell their doctors the truth. I say, "I urinated normally" because Dr. Scionti insists on installing a super-pubic catheter, he installs it first after you are put under, then he fills the bladder and flushes it, to cleanse. After the procedure you pee into it for 2 weeks, it's so the prostate particles left after the procedure come out through the tube, as they could clog up your penis....then a TURP is required, ugh. Many doctors don't install the super-pubic catheter, but Dr. Scionti is very thorough and careful. And I didn't want to risk a TURP, 2 day hospital stay and sounds painful.

The site yananow.net is great (You Are Not Alone.net)-- lots of people write in their experiences, the ones who didn't follow the doctors rules after HIFU are the ones with problems (rule number one--drink lots of water--to flush out the particles, or you may end up getting a TURP). This is where I found my satistics, as Europe doesn't keep good statistics, that's why the FDA won't allow their data. Yes, they keep data, but it isn't like we do, it's more relaxed. Also--they use the Albatherm...40% don't get it all. good reading:prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

I wish you all the best, write again with any questions. Google International HIFU

[ohnoo]

From what I have learned I agree with you, it's bad news. As your number went up so much in one year, and also my urologist said that any number over 1. is cancer, but they don't alert you because it could be the kind that grows very slowly, so they watch and keep testing. But your free is low, that's good news, you have discovered this early on!

Yes, they do HIFU in Canada, but be sure it's Sonablade500, as I think they use Albatherm and the redo on the Albatherm is 40%, because they cannot get all the gland. The redo costs $25,000. just like the first treatment costs. Canada has been using HIFU for 5 years. Dr. Scionti is the guy who teaches all the doctors in North America how to do it. He is devoted, he has been named the guy in charge of keeping data from all the HIFU centers around the world (I found on reuters). I feel so forunate to have found him, as in all things, experience counts! He saw my nerves and spared them, I urinated normally yesterday -- so I am NOT incontinent! My urologist here told me that statistics say that 20% are incontinent after prostate surgery, but he thinks it's more like 50%, because men don't tell their doctors the truth. I say, "I urinated normally" because Dr. Scionti insists on installing a super-pubic catheter, he installs it first after you are put under, then he fills the bladder and flushes it, to cleanse. After the procedure you pee into it for 2 weeks, it's so the prostate particles left after the procedure come out through the tube, as they could clog up your penis....then a TURP is required, ugh. Many doctors don't install the super-pubic catheter, but Dr. Scionti is very thorough and careful. And I didn't want to risk a TURP, 2 day hospital stay and sounds painful.

The site yananow.net is great (You Are Not Alone.net)-- lots of people write in their experiences, the ones who didn't follow the doctors rules after HIFU are the ones with problems (rule number one--drink lots of water--to flush out the particles, or you may end up getting a TURP). This is where I found my satistics, as Europe doesn't keep good statistics, that's why the FDA won't allow their data. Yes, they keep data, but it isn't like we do, it's more relaxed. Also--they use the Albatherm...40% don't get it all. good reading:prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

I wish you all the best, write again with any questions. Google International HIFU

[ohnoo]

doc says I can have my catheter out as I am urinating normally, so I am getting my catheter out on Monday, it would come out today, but it is Saturday. So, 10 nights with it.

[ohnoo]

I have had such a positive experience with HIFU, no incontinence issues or impotence! no pain, just relief.

I just found this list of clinical trials, wish I had known of this, it's free!

Alabama Urology Centers of Alabama --Recruiting
Birmingham, Alabama

Florida Winter Park Urology Associates --Recruiting
Winter Park, Florida

Specialists in Urology --Recruiting
Naples, Florida

Montana Five Valleys Urology --Recruiting
Missoula, Montana

South Carolina Grand Strand Urology --Recruiting
Myrtle Beach, South Carolina

Tennessee Urology Associates --Recruiting
Nashville, Tennessee

Southeast Urology Network Active, not recruiting
Memphis, Tennessee

Texas Urology of San Antonio Active, not recruiting
San Antonio, Texas

Virginia Urology of Virginia Research --Recruiting
Norfolk, Virginia

Washington Integrity Medical Research --Recruiting
Terrace, Washington

http://clinicaltrials.gov/ct2/show/N...ns_ex=Y&rank=3

Here's the website from the Prostate Cancer Research Institute, an independent research charity : http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html

Maybe I seen too up on this-- but I am quite outraged that we in the USA aren't privy to this info from our urologists, we are still so primitive!

[buckmelanoma]

Curious why you would go to Mexico for HIFU treatment?

[ohnoo]

HIFU is ultrasound treatment, it burns out the entire prostae, similiar to radiation, without the radiaiton effects of possible cancer to nearby areas later on.

HIFU is not approved in the USA yet, it is in clinical trials here, on it's fifth year. It has been in use in Europe for 16 years. But the Europeans use the Albatherm machine which has a smaller preset area it zaps, so the entire prostate only gets zapped if yours is a smaller one. Some American doctors are going to Mexico, Bahamas and Canada to treat men with prostate cancer because they know about it and acknowledge it is a better treatment, vertually no chance of incontinence or impotence, they use the Sonablade500 ultrasound machine. They don't say this on their web sites because of lawyers warning them that there is always a first...or someone without principals.

I think I am hornier than before the treatment and I don't dribble like I used to. My treatment was a piece of cake, I recommend it highly. No recovery time needed. No ejaculation but my cimax is the same.

I understand that other countries use this ultrasound for breast, kidney, pancreatic & liver cancer. Our FDA is dragging it's feet because the board of directors is made up of surgeons and radialogists. But someday those two treatments will be seen as primitive.

[RickG]

[quote="mrgto"]I have heard of it but only to know it exists. You said it has been in use 16 years in Europe? I think it is done in Canada too? Can you point us to a link or something with statistics on recurrence after 5, 10 or more years? This would be good information to use in comparison.

I just had a biopsy on 12/19. The Dr. was supposed to call with results on 12/24 but didn't. I can only think the worst --- if results were bad wait till after Xmas, if good he would have called. I've been researching.

PSA 1.5 - 04
1.4 - 05
1.4 - 07
4.1 - 9/08
3.3 - 12/08 Free percent 6

thanks[/quote]
You may find this informative . http://stanford.wellsphere.com/cancer-article/high-intensity-focused-ultrasound-hifu-in-treatment-of-early-stage-localized-prostate-cance/363327