HIFU cure

notme · Guest

Has anyone here looked into the European cure for prostate cancer called High Intensified Focused Ultrasound? HIFU

It's been used in Europe for 16 years with a 1% incontinence rate, 94% cure rate. It's been approved in Canada, Japan, Mexico, heck--everywhere but here!! It's in clinical trials now in the USA. As it's ultrasound, there's no cutting, little risks, no down time.

I'm looking into it...found a great article at the Prostate Cancer Research Institute, an independent research charity on HIFU.

My PSA is 8.5 with a gleason of 3+3=6. Maybe I'm due for a vacation!

Replicant · Moderator Joined: 01 Nov 2006 Posts: 744

I'm aware of it, and I'm sure some others here are too. But I admit I don't know all that much about it, since when I got diagnosed I wasn't really interested in traveling. Plus it would have been a huge battle with my insurance company, and I'd still come home wearing a catheter...anyway, I didn't go for it. I'm not bashing it--it could be just the ticket for many men.

There has been more discussion of it on a couple of other boards I watch, HealingWell.com and WebMD's prostate cancer discussion board. One of the senior members of the WebMD group had been following HIFU developments closely and wanted to make sure I knew about it both as a primary treatment, and later, as a salvage treatment when my PSA rose.

The guys on the usenet group alt.support.cancer.prostate talk about it sometimes. (You can find that group by going to Google Groups and searching for prostate cancer support). Some of the members on that group have had HIFU.

One thing about HIFU--a number of men, by the time they get prostate cancer, have had some type of metallic implant, like a new hip. HIFU can't be used on them, as I found out by reading the above group.
_________________
Replicant

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NXMX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 (and thereafter) <0.1
http://pcabefore50.blogspot.com

notme · Guest

Thanks for all the contact groups, I'll be looking them up!

I found a lady whose husband had it done 7 years ago, and she's sent 6 other men, everyone has had great results! From what she said insurance won't pre-approve, but if you go ahead and have it done in Mexico or Canada (that she knows of) then they will pay, there are companies who fight for you--they charge 15% and you don't need to pay them anything-- if they don't get anything.

Plus, she says that HIFU care center will find financing. After all the horrible stories I've read here I am not even considering surgery. A urology nurse friend of mine says if you ever watched the surgery you would know the chance of being impotent or incontinent looks like 100% as the nerves are everywhere, all bundled up, she said it's a messy awful surgery, & men don't talk about it, except here! So, even doctors aren't sure what the odds are. My own urologist told me he thinks 50%, and he was trying to sell surgery at the time!

My urologist told me I don't have much time, "weeks to decide", which makes me wonder if he isn't trying to tie me to the table before I have a chance to think. It just seems to me that prostate cancer surgery will someday be viewed as being so primitive!

I found the trials for Sonablate500, they are in Birmingham, Alabama, Winter Park, Florida, Naples, Florida, Missoula, Montana, Myrtle Beach, South Carolina, Nashville, Tennessee, Memphis, Tennessee, San Antonio, Texas, Norfolk, Virginia, Terrace, Washington.

This is free! However, my nurse friend of mine warned me these are doctors who haven't had a lot of experience with the procedure, it might be easy to do, but take into consideration a doc who has done it many times would probably get better results.

Still searching, hope my work helps someone else...and thanks to you Replicant!!

chris nz · Regular Joined: 25 Jun 2006 Posts: 15

hi Notme, Take your time and do your research, besides the choice of surgeon/operator you have to consider the machine being used. i too considered HIFU, but would have to travel to Oz to get it done, finally settled on brachytherapy, no down time or catheter for me, early days yet, was done 6 months ago.
best, chris nz
_________________
chris nz
where there is a will,there IS a way

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 249

Can-AmHIFU is located in Toronto and the Niagara areas (more but not sure where).

May I suggest Dr. Sender Hershorn as the 'go-to' person.

He is part owner of the company but has done many of the HIFUs in our area.

We met a man at the clinic, who was representing ManToMan, the support group and he thought it was great.

My Hubby didn't qualify for it, as his Gleason score was wayyy too high.

Our government health program doesn't cover it yet but it's worth the cash to avoid all these side-effects, IMO.

Best of luck to you......come visit Toronto or Niagara!

Jean

viperfred · Regular Joined: 01 Jan 2009 Posts: 19

Agree there is no reason to risk the quality of life with surgery.

For localized PCa CyberKnife is a great option. I found no treatment that had better cure rates at 1,2,3,4 years and very little risk of side effects. Now 8 monts post treatment and no side effects for the last five months.

For some reason the CyberKnife is not advertised like HIFU which has not proven to be better.

The CyberKnife is 5 days of external beam radiation. The dose per day is high like HDR Brachytherapy-best cure rate at 10 years. Because the CyberKnife mimics the HDR BT it is expected to be as good or better than HDR BT. The CyberKnife tracks the prostate real time allowing the beam to stary on target. As a result the margin around the prostate is reduced which means less collateral damage and less side effects while maximizing cure.

notme · Guest

But cyberknife and brachytherapy are radiation, and my doc told me radiation causes cancer later on of the renal & bladder area...

From my studies I'd only do the Sonablade, as it can be manipulated in case the prostate moves during treatment (if the bladder spasms..) see? I've been reading all that I can, I'm thinking Mexico or Bahamas--it warm down there!

I agree Jean, it costs a lot but quality of life means everything. I wonder why Gleason score can be too high? Maybe just because it's a new treatment?

all this talk "prostate cancer is easy, it's curable, blah blah blah" it's easy when you don't have it.

notme · Guest

Turns out that Dr. S. Scionti (from Hilton Head, S.C) is the doc who teaches the clinical trial doctors how to preform HIFU all over America, he's one of the guys who goes to Mexico and all over to give the treatment, so I'm booking with him, he has done more than 400 HIFUs.

I hear that Dr. Lazar is 2nd most experienced, he lives in Santa Rosa, CA. Both have the Sonablate500.

Still I'm nervous.

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 249

I wish you the very best, I've heard it's a great therapy.

My Husband's a Gleason 9, so it was not advisable in case it had already spread.

Unfortunately, it has spread, found at his Radical P.

Good luck and enjoy the sunshine, we're in a deep freeze here!

Jean

neutrondbob

The FDA does not merit perfection and people who know alot about that system and stuff that gets rushed through vs. stuff that doesn't. Makes me skeptical of the agendas, the MRI (combidex or highly special imaging that looks like it is better) is not here either, but you can get it abroad. I question it upfront call me whatever. Do remember you have lobbyists in our country whom protect and defend the status quo for monetary reasons (i.e. greed) and not because of love of humanity but love of $$$$$. Sounds wacko well just to give you an idea of how righteous these drug companies are that prescribe LHRH (Lupron and Zoladex) and they are useful medicines not saying there aren't. We sometimes have to use them or choose something as patients.

Google search Lupron( Tab Pharmaceutical-?) or Zoladex (Astrazeneca) and lawsuits....it reads: lost lawsuit for hundreds of millions of dollars because of kickback, bribery, free big screen t.v.s to docs etc.,they paid it and never looked back...sales are fantastic still (maybe no bribes now).

Example #2: Lupron here varies alot $1500-2500 common
in Spain Lupron $400 (us dollars) comparisons on 3 mo. injection

This is called marketing....we have insurance or should have and we pay.

I have lack of total trust in the establishment, maybe you should question everything.????

It is what it is.
_________________
"Youth is wasted on the Young"-W.C. Fields

notme · Guest

Jean,
From what I understand the clinical trials don't accept men with a Gleason score over 7, but that's just the trials. I don't know for sure, but I think other doctors not in the trials accept higher levels, and I know that some cancer outside the gland can be zapped.

Call Dr. Scionti and ask, it's toll free, 888-874-4383.

Yes neutronBob, we live in a corrupt world, but ya gotta trust someone....so best to trust our instincts...I hope anyway! I do understand the drug cost though, as we have more money, can get subsidies and insurance and some countries have so little....we finance the cost of drug exploration. No drugs involved in HIFU, maybe that's why the FDA is dragging their feet! Doesn't the Spainish government help pay for medical expenses? Taxes are way high, it's socialism.

notme · Guest

BTW, I'm leaving tomorrow for Mexico, booked for Friday 23rd.! Can hardly believe he isn't totally booked out, but no one knows about this.

neutrondbob · Posted: Mon Jan 19, 2009 6:37 am Post subject: Good results wished

Conceptually it looks like a better mouse trap (per se), cryo got approved at one point too. This should get approval and become another choice in the USA, if not Canada and other places have it now.

Your might have to trust someone in your journey, trust but verify what they are prescribing, you could change horses too. All is not altruistic out there although it should be.

Cool

notme · Guest

I am cancer free, no pain, not even discomfort, just annoyed that I have this supra pubic catheter!

On Thursday night I met Dr. Scionti and his nurse, he is a great friendly guy, very devoted. They explained everything.

Friday 5AM I awoke to start with the 2 fleet enmeas I had to use to clean myself out. At 7:30AM I was at the beautiful perfectly clean San Javier Hospital, they gave me an IV, and soon I was asleep. At 11AM I woke up, they gave me lunch, and at 3PM they took me back to my hotel. I went out to dinner that evening, and yesterday (the next day) I went for a long walk on the beach.

I understand that I have this catheter out of caution. When I first went under they installed it, and flushed me out and drained my bladder, cleanliness. Then they insert the ultra sound probe in my rectom (which I have no feeling that it was ever there) and begin vaporizing my prostate. Dr. Scionti said he couldn't see any signs of cancer outside my prostate, (if it was there he could have zapped it too) the nerves were very visible, so he could avoid them, and it was a textbook procedure.

I am now urinating (catheter) pink, and I can see little pieces of the prostate and blood pieces. This is another reason for the catheter, so these pieces don't get stuck in the urethra and cause a clog. He guesses I'll need it for 10 days.

I return home tomorrow, I've just bought a pair of baggy pants to wear on the flight, the ones I bought were baggy but they waist is too tight as I find I don't hold in my stomach at all, just nervous about this tube I guess. Which is a small price to pay to be cancer free.

It was my birthday yesterday, I'm worth the $25,000. that I spent!!

I am going to write my congressmen and Dr. Gupta and press to get this approved!!! Dr. Scionti has 5 years of data. Europe has 16 years! The FDA is dragging their feet because the surgeons on their board are afraid of all the $$ they will lose. Well, it's high time they learn this easy procedure!!!

Jean,
I haven't read here much lately but I did read that your husband's cancer has spread, he is lucky to have you, you are quite a lady, I send you, and him, all the best.

Jean222 · Senior User Joined: 14 Dec 2008 Posts: 249

This is wonderful news to read on a bright, sunny (if freezing cold..lol) day!!

I've only met one fellow from ManToMan who had the same procedure but he said it was a piece of cake for him and had totally eradicated his cancer too.

Yes, you sure are worth the mega$$$$ you spent but IMO, this procedure should be available to other men in the USA, covered by insurance plans etc.

As you state, this has been used for many years in Europe, very successfully.

We're lucky to have it available up here but it's not covered by our Ontario Health Insurance Plan, yet.

Seems the very same docs who do surgery for PCa are the ones who've opened the private clinics. They're not losing $$$$, just providing what they see as another viable and safe procedure.

Thankyou for your compliment, I consider myself to be the lucky one......we just love each other dearly.

When I was sick for so long, he was my angel & rock, now it's my turn to be his rock. I'm a bit of a teary rock though.......this is very tough.

Take care and enjoy one more walk on the beach for me please!!

Jean

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