HIFU cure

lauriejo · Posted: Sun Aug 30, 2009 7:25 am Post subject: Thank you notme

Notme, Thank you for your kind words. I too am baffled by the reaction to HIFU. All I can say is that all notme and I are trying to do spread the word and save our fellow man from pain and misery. Maybe we got too exuberant. I think the majority of people believe whatever their doctors tell them, including my husband. This time it was just too much for him and he opened his mind to an alternative. Sometimes I wake up in the middle of the night and wonder did I dream that there is an alternative treatment (HIFU) because it does seem too good to be true. We are hoping and praying that we are making the right decision. But we would kick ourselves if we didn't spend the money on HIFU treatment to preserve our quality of life.
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55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09

notme · Guest

I just got off the phone with a friend who had HIFU six weeks ago, he wants to take my wife and I out to dinner, he is so happy, we HIFUers just are too exhuberant....

another one of his friends had RP over a year ago, his wife has left him because he was so angry- all the time -after the surgery -- as it left him totally without erectile function and completely incontinent.

So, best wishes to you lauriejo, I am sure it will all go perfectly. But do keep in touch (I want to stress the importance of following the post treatment rules Wink

)

notme · Guest

BTW, the catheter was no big deal, no pain at all, a worry yes, bothersome--yes!, but geat at night because I never had to get up and go!

but it was gone in two weeks, I healed up in a day. Don't remove it before his two weeks are up, it's important to get rid of the ash.

and as you know, call Dr. Scionti anytime with any stupid questions, he loves staying in touch. He hasn't had any complaints for a reason ~ he really does care.

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

There is only ONE treatment here that has people advocating for it to the exclusion of all other considerations. Needless to say that treatment is Hifu

The one turn-off about Hifu discussion to most of us is that it is presented with no regard for objectivity. Maybe we should just rename this the HIfu forum or give HiFu its own Board.

Every person I know here that has had radiation, open surgery, robotic surgery, or that has had ADT, all discuss the pros and cons or the treatment they had and that of other treatments. Only one treatment is presented with blind religious zeal. My concern is that it is so blatant that it no doubt drives people that would consider Hifu away because it sounds like Billy Mays trying to sell a vacuum cleaner that doubles as automotive paint sprayer (for 4 easy payments of $19.95). Even the title of this this thread "Hifu Cure" as opposed to "Hifu treatment" just smacks of snake oil and I think Hifu deserves better than that.

It makes it impossible to even take Hifu or the discussion on Hifu seriously. That is the problem.
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History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

lauriejo · Posted: Mon Aug 31, 2009 10:57 am Post subject: Thank you again

Notme, Thank you again for your encouragement. Cancer creates a trying time for everyone. I guess we can't blame people on this forum for getting cranky. Everyone has their own opinion. Once a decision is made it's nice to hear positive reinforcement. All we can do is share our experiences. If we help one person it is worth it. I hope and pray that my husband's experience will be as successful as yours and all the other HIFU patients I have spoken to on the phone. Thanks for the advice on following dr's orders, but like I said he usually does everything they tell him. This time was a little too drastic for business as usual and he decided to think outside the box.
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55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09

lauriejo · Posted: Mon Aug 31, 2009 2:35 pm Post subject: cons of HIFU

The only drawback I see is that it cost $25000, but what is quality of life worth? I am confident in the procedure because the International HIFU doctors are prominent urologists that are very confident in their abilities to minimize the side effects associated with eradicating prostate cancer. The davinci robot surgeon we saw made us feel very uneasy. He did not sound confident in his abilities at all. It was as if he thought we should be grateful that he was cutting the cancer out and that we shouldn't complain about the side effects. I'll let you know after September 25th.
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55 years old, PSA 6, Gleason 6, T1c, 6 of 10 cores positive HIFU 9/25/09

Hawk · Senior User Joined: 22 Nov 2006 Posts: 406

lauriejo,

This has nothing to do with people being crabby. It has to do with the fact that for the most part, all of us here have a high level of respect for each other. We hold each other to a high level or ethics and responsibility. We depend on each other to first take a step back, then disperse reasonably, fair, unbiased, objective, information.

It that does not happen it injures the entire community and our ability to support each other and newcomers.
_________________
History: PSA's 6.7 neg. biopsy - PSA 16.6 neg. biopsy - PSA's 8.2, 8.1, 8.7 - Biopsy. 4+4 Gleason 8. Lap RP Apr 2004, age 52 All neg margins, nodes, and structures. (T2a). Post RP PSA: every 6 mo. <.1 until Feb, 08 (46 mos) PSA .1 - I then got sensitive tests (all in 2008) showing:
Feb .06, May .09, Jun .10, Aug .10, Nov .15 -SRT

Replicant · Moderator Joined: 01 Nov 2006 Posts: 741

Your husband is in the category of men who have statistically done well with HIFU, and I wish him the best. I'm not a cheerleader for any single treatment for everyone, by the way. I hope you keep in contact with us on this board.
Best wishes to you both.
_________________
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

How can I say there's a down side when I don't see one? I'm not going to make one up to make HIFU seem more real, remember-- I complained about the catheter when it was in. The other down side would only be that insurance doesn't cover it, except Blue Cross ~ they pay. But I agree with Lauriejo, I go to work to make money to make my life better, so I spend it wisely, and this was the best money I ever spent.

I don't go on other threads except to inform guys that HIFU is an option, when they say no thanks or ignor me, I disappear.

This isn't what I do for entertainment, I show up out of concern for others .....I've sent in several friends and they are all happy, I want to spread the cheer. I am very happy that I was here for lauriejo, but I don't think she learned of it from me, I was just reinforcement.

I had dinner with a guy, who had HIFU, and his wife last night, he told me a funny (but not at the time) story of how when his catheter was removed his hole squirted urine for about 10 hours. Mine healed immediately. I wonder why his didn't close up right away..?

I am reporting reasonable, fair, unbiased, objective, information.
Yes, their are reports and trials showing stricture and ED, but I really feel that those are old reports or that they used inexperienced doctors....I reread my notes when I was in Mexico, and Dr. Scionti actually said he feels badly for his first 20 patients, not 12--as I said before, so it really takes some practice, it's an art ~ like surgery. He's done, I guess, 700 now.

I found a lady whose husband had HIFU 3 years ago, his PSA has stayed at 0.3.

lauriejo said, " If we help one person it is worth it" Amen, I say that all the time, and I think of leaving because that one person here is you....I'm waiting now to hear how it went!

Nice of Replicant to point out that lauriejo's husband is in the category of men that do well with HIFU.

yipper · New User Joined: 12 Aug 2009 Posts: 9

i first heard about HIFU about a month before my surgery. I read all I could about it, and was impressed by the claims of low side effects. However, I stayed with surgery for one reason, and it had nothing to do with the $25,000. I could only find about 5 years of results with HIFU, versus over 25 years for nerve sparing surgery, with numerous statistical studies of results for series of 10 and 15 years.

Even with all of the experience and studies associated with surgery, and even though it has the potential of being curative, I don't know of any surgeon or patient who would claim this is a cure in all cases. Even for cases where all of the cancer appears to have been removed, there is always a small chance that some cells have escaped, hence the need for repeat PSA tests.

Back to HIFU, I hope it's proven to be a curative treatment with low side effects, but it's too early to tell, and it doesn't help to make claims that it's a cure with such limited data.

We all have to make tough decisions and, yes, surgery has side effects. But it's a decision we make because we weigh the chance for a long term cure against the side effects. If you want to proclaim the lesser side of effects of HIFU, that's fair. But you shouldn't make claims of a cure unless and until you have validated data that extends longer than the five years or so that's out there. After all, even after 10 or 15 years there's a chance that cancer recurs after surgery. I doubt if HIFU can do better than surgery in 10 or 15 years but, if it does, we'll have to wait a while to find out.

lihhnl · Regular Joined: 31 Aug 2009 Posts: 10

I have been a lurker for about a year and just recently have been diagnosed with prostate cancer. My PSA was 5.5 in December of 08 but I was reluctant to do a biopsy until I learned more. After an doppler ultrasound exam I had a very small area that was "suspicious" but decided to wait and see. My most recent PSA climbed to 6.9 in June.

I went back to my doctor, Dr. Chinn of Arcadia, and had my biopsy which was 3+4+7 for two samples out of 18. My stage is between T2a and T2b. I just turned 65. Total CAT and Bone scans were negative and the cancer is confined to my prostate. My decision is to be treated using HIFU based upon my own research and discussions with others who had different forms of treatment who were not happy with their results. I find HIFU to be the least intrusive with the best results and less complications. My HIFU treatment will be done in Europe.

lihhnl · Regular Joined: 31 Aug 2009 Posts: 10

Sorry for the typo, should have been 3=4=7.

lihhnl · Regular Joined: 31 Aug 2009 Posts: 10

Sorry again, 3+4=7.

yipper · New User Joined: 12 Aug 2009 Posts: 9

[quote="lihhnl"]
I went back to my doctor, Dr. Chinn of Arcadia, and had my biopsy which was 3+4+7 for two samples out of 18. My stage is between T2a and T2b. I just turned 65. Total CAT and Bone scans were negative and the cancer is confined to my prostate. My decision is to be treated using HIFU based upon my own research and discussions with others who had different forms of treatment who were not happy with their results. I find HIFU to be the least intrusive with the best results and less complications. My HIFU treatment will be done in Europe.[/quote]

Good luck with your HIFU. I'm not trying to change your mind, but here is a question that you might want to ask your doctor. I'm curious myself how HIFU handles this. I had da vinci surgery about a month ago, with PSA 5.9, Gleason 3+4, and stage T2a. The post surgery pathology came back at Gleason 4+3, stage T2c, with negative margins and no seminal vesicle involvement, so I feel pretty good that my surgeon got all the cancer out. However, under microscopic analysis the pathology report showed cancer cells less than 1mm away from the urethra.

With surgery, the urethra inside the prostate is removed along with the prostate, so it's gone. But with HIFU, the urethra stays in and the prostate tissue around it is cooked. That's fine but I wonder about (1) can HIFU get right up to the urethra, within 1 mm, and not damage the uretrha, and (2) how can you even know, without taking the prostate out, that cancer is restricted to the places shown by external studies, especially microscopic involvement? And it's not just the urethra, it's the apex of the prostate where there really is not much of a capsule. These are the questions that I would want answers to if I were having HIFU, not just the side effects.

As I said, I'm not trying to dissuade you or anyone from HIFU, but every treatment method needs to answer the tough questions. If you ask your doctor, I'd be curious as to the answers.

notme · Guest

If any cancer is left after HIFU you can be reHIFUed. If cancer is outside the gland, and the doctor is using the Sonablate, then that cancer can be treated (he can see it through the ultrasound screen). Yes, the doc is able to treat every little bit of cancer/tissue inside the gland, he can see what he is doing by watching the ultrasound screen. If all of the tissue is gone..... Very Happy

If the gland is nicked in surgery--can the cancer spill out??

I found some people who had HIFU 8 years ago in Europe who report all is great today. Plus, I have three friends who are doctors in Europe who completely encouraged me to go with HIFU. One is a GP in Austria, surgeon in Germany, urologist in Switzerland.

lihhnl,
I know of a doctor in Belgin who has a great track record. I hope that you don't need a TURP prior, as I hear it's routein with the Ablatherm. A TURP can cause scarring and incontinence. Good luck!! How long are you staying afterwards? Where are you going? Will you have a supra pubic catheter or foley?

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