treatment options

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treatment options

by WEST22 on Fri Oct 23, 2009 07:40 PM

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I am trying to decide treatment for my cancer psa 4.2 gleason 3-4 pni I am 51 years old

RE: treatment options

by Johnt on Fri Oct 23, 2009 08:20 PM

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Many options are available to you. Surgery, Brachytherapy, IMRT all will achieve similar results with different side affects.

The Prostate Cancer Research Institute has a lot of information on treatment options as so does the YANA website.

JohnT

RE: treatment options

by ohnoo on Sat Oct 24, 2009 06:18 PM

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A friend told me about HIfu just weeks prior to treatment, it was the best decision I ever made, and the best money I ever spent....$25,000. plus travel expenses. Some insurance companies pay, but most dont, it isn't FDA approved so they can NOT pre-approve, if you call it surely will not be paid, but if you go ahead and then submit, you have a chance.

The chances of any side effects are extremely low, as it's High Intensity Focused Ultrasound, ultrasound is non-ionizing and doesn't hurt surrounding tissue.  The most important thing is to find a very experienced doctor, as in anything, experience counts.

I had it done a year ago, no side effects, no problems, I have sent in many other men all report the same -- they are thrilled.  My  PSA is now 0.3, which is perfect as I still have a gland, just no cancer in it.  Sex is great and I pee like a kid again, I cannot recommend HIFU enough.  It will save your quality of life.  All us HIFU guys are so happy we tend to get ourselves banned from forums as they accuse of of being salemen.  Nothing can be further from the truth, we are simply very pleased and want to share the word.

I used Dr. S. Scionti of International Hifu, he is the doc that has trained alll the urologists around the country so they can work in the clinical trials or can be ready when it's FDA approved.  HIFU has been in use in Europe for 18 years with a 94% success at 5 year rate, in Japan they post a 97% success rate at 5 years.  If cancer reoccurs you can be reHIFUed, or surgery or radiation, no option is not an option.  I know (through the web) a guy in the UK who was treated with HIFU 7 years ago, his PSA is 0.1, he has friends who also have been treated, similiar results, all no side-effects.

It is in clinical trials in the USA, there are too many restrictions on the trials, but I have a list of all of them and their phone numbers if you want.


Comparing ultrasound and radiation, I think they both are the same technology--they target the gland, only ultrasound cooks the tissue whereas radiation alters the DNA. With HIFU, no cutting is involved, so no risk from surgery.

Good luck in whatever you chose!

I am happy to answer any questions.



RE: treatment options

by ohnoo on Sat Oct 24, 2009 06:24 PM

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Here is a good web site to read about HIFU, how it works, etc.   It's a independent research not-for-profit site: http://www.prostate-cancer.org/education/novelthr/Chinn_Tran

RE: treatment options

by Johnt on Tue Oct 27, 2009 01:48 AM

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On Oct 24, 2009 6:24 PM ohnoo wrote:

Here is a good web site to read about HIFU, how it works, etc.   It's a independent research not-for-profit site: http://www.prostate-cancer.org/education/novelthr/Chinn_Tran srectalHIFU.html"" target="_blank" rel="nofollow">http://www.prostate-cancer.org/education/novelthr/Chinn_Tran target="_blank" rel="nofollow">http://www.prostate-cancer.org/education/novelthr/Chinn_Tran

The article you refrenced on the PCRI shows an impotance rate of 30% and a cure rate at 5 years at 70%; a lot of difference in the stats from your first post.

RE: treatment options

by ohnoo on Tue Oct 27, 2009 02:40 PM

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I post that link so that the reader can find other info out there.  I know I am enthusiastic.  There are different trials, they come up with different stats.  That link also posts a 0-2% incontinence rate.

My own experience was picture perfect, and I have many friends who are as enthusiastic as I am.  The impotence rate (I believe) is only temporary as the nerves have been traumatized, Cialis works with ED after hifu, whereas I hear that it doesn't always work with surgery or radiation.

As far as the 70% goes, I can only guess that it means they didn't get all the tissue, so they would need to be reHIFUed.   I'd take my chances of having to be HIFUed anyday over any other treatment's odds. 

You can post all kinds of clinical trial outcomes, but trials use inexperienced doctors, and the doctors in the trials even say that once they passed "the learning curve" that the incidence of side-effects greatly deminished.

Using a experienced doctor is the key in no matter what you do.  HIFU was the best decision I ever made, and I haven't heard anything different from anyone that I've sent in.  As time goes by doctors get more knowledgeable, like since they started using the supra pubic catheter the incidence of stricture has reduced significantly.  I almost dread the day the FDA approves HIFU, as there will be inexperienced doctors treating men, and some side-effects will surely happen.

RE: treatment options

by Badmamazoo on Fri Oct 30, 2009 05:24 PM

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ohnoo,

 

Being "re-hifued" means paying another $20,000 or so out of pocket (along with the travel, etc). Also, I wonder if United States insurers would cover ANY salvage treatments (ie. radiation) on a primary treatment that is still considered experimental.

Other than that, I think HIFU has good documentation on male potency and the 70% 5- year success is probably not out of line with the other treatments.

I think the real risk is that in the U.S. is that HIFU is still considered experimental. When (not if) it is approved, it will be a very good treatment to go with the others (surgery, radiation and cryo). 

 

RE: treatment options

by Chrismd on Tue Nov 03, 2009 02:34 AM

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I suggest you discuss options with a surgeon (both traditional and robotic) and a radiation oncologist (I'm not sure who you would speak to about HIFU, but that would certainly be worthwhile).  You may want to also get their thoughts on watchful waiting.

Do some research on the net so that you can query them on the various issues of concerns (side effects, etc.).

If you haven't done so, you may want to get a second opinion on the biopsy results.

As noted by others, experience for surgeons is very important.

Best wishes,

Chris

RE: treatment options

by Anne63 on Thu Nov 05, 2009 02:41 PM

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West22, You sound exactly like my husband.  He was 51 when he was diagnosed with a psa of 4.1 and gleason 3-4 or 4-3 I don't remember which came first.  Anyway, he is at the University of Florida Proton Therapy Institute in Jacksonville and he is almost finished with his treatment.  He has felt great the whole time, insurance pays for it, it is as successful as surgery or radiation.  He can't say enough positive things about it.  The only down side is he had to stay in Floriday for 2 months and that is not an option for everyone.  If you want more information there is a web site www.protonbob.com .  I hope this helps because I know all the choices out there are very daunting but we have been very happy with the choice we made.  Feel free to contact me if there is anything I can help with.

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