I am just two weeks removed from being told I have PC and have decided to watch and wait as prostate is normal size, PSA 4.7 and Gleason 7. The cancer is confined to the left upper quadrant.
I really prefer HIFU treatments and would travel out of country but would like to know if anyone on the board has good knowledge of these trials and how to get into one.
Thanks in advance.
Jim

Did your Dr. recommend the HIFU treatment? As you know its still considered experimental in the U.S although approved for use in Europe.
Many Gleason scores are upgraded when rechecked at a patholgy lab of a major cancer center which specialize in P.C.
To improve your comfort level in making your treatment decision you might consider having your slides reviewed at a major cancer institution's pathology lab to reconfirm the commercial labs iinitial grading.

I am just two weeks removed from being told I have PC and have decided to watch and wait as prostate is normal size, PSA 4.7 and Gleason 7. The cancer is confined to the left upper quadrant.
I really prefer HIFU treatments and would travel out of country but would like to know if anyone on the board has good knowledge of these trials and how to get into one.
Thanks in advance.
Jim

Jim,

I'm sorry you have had to join our club, but welcome anyway! :)

Here's a way you might find out about some HIFU trials, but it will take some work. If you go to the free Government website www.pubmed.gov and search for " HIFU AND prostate cancer AND clinical trial ", you will get 19 hits. If you click on the authors list of each, you will see an abstract of the paper, if there is one, and the institutions involved. Often point of contact information is given. You can almost guess roughly where the institution is located from the authors' names. One of the papers is a review of HIFU trials for prostate cancer:

Gardner TA, Koch MO.
Prostate cancer therapy with high-intensity focused ultrasound.
Clin Genitourin Cancer. 2005 Dec;4(3):187-92. Review.

It summarizes clinical trials of HIFU for PC to date, which probably means up to the date the paper was submitted for publication, probably about 2004. PubMed has a feature where papers can be ordered for a fee, but you can also find a medical library that is accessible to patients and call to see if they have that issue of the journal. I believe that access is free. Another free Government website lists the free medical libraries by state and location: http://nnlm.gov/members/ .

If you find a trial that has been reported, there is a chance that the trial is still recruiting to obtain a broader base of results.

Since you are in Atlanta and have what currently appears to be a localized, confined cancer, have you considered the Radiation Clinics of Georgia, located right in Atlanta? Radiation is just one of many options, but RCOG is prominent nationally and might be worth a consult or getting some of their free patient education. Just a thought.

Jim

the "4" component of your Gleason score puts you at an intermediate risk level and time is not on your side. I think I began my treatments about 3 months after the diagnosis.


Good point daff,

Not sure your situation warrants too much time investigating clinical trial treatments. Maybe others can offer their spin.

Todays NY Times contains a feature article starting on front page headed
"Despite Doubts Cancer therapy Draws Patients" referring to americans going off shore, especially Mexico for HIFU treatments. It states that the manufacturer of the equipment is trying to entice american Dr's to become certified and treat patients in Mexico and mahe lots of money. The treatment can run as high as $30,000 with docs receiving around $7,500 per treatment.
It goes on to point up the doubts and concerns about the treatment despite the claims that it can control cancer as well as approved treatmnets in the U.S. without the side effects. Some patients who have undergone HIFU dispute the claims and one reported a return of cancer as well as experiencing erectile disfunction. The E.D. rates run as high as 50% which is comparable to approved treatments.
Dr Peter Scardino is quoted as calling HIFU a "second class therapy" which might have some use for special cases. He went on to point out that if it really has lower E.D. rates it could be because some cancer is left behind.
Its also not covered by insurance in the U.S. as its considered "investigational".

... It would be interesting to hear from others on any positive or negative experience, either first-hand or otherwise, with HIFU.

One of the trial HIFU sites was near me in Washington, DC, but I'm not sure whether they are still treating patients. No one coming to our support group has had HIFU.

All indications I'm getting are that HIFU is still in the investigational stage. I just went to www.pubmed.med and entered this search string to see how much research was being reported: " HIFU AND prostate cancer ". I got 95 hits, with the majority in just the past few years, and with the earliest in 1995. Both the relatively small number of hits and the fact that the first research was reported only thirteen years ago indicates how new this therapy really is.

Here's the conclusion from the abstract of the first hit on the list, a 2008 paper: "...Although a great deal about HIFU physics is understood, its clinical applications are currently limited, and multiple trials are underway worldwide to determine its efficacy."

The third hit (as of today) is from a German study that reviewed results for low and intermediate risk patients treated from 1997. Here's a key sentence from the results: " The actuarial biochemical failure-free [probably means no adverse PSA score] survival rates (SR) at 5 and 7 yr were 77% and 69%, respectively. The actuarial disease-free SR at 5 and 7 yr were 66% :( and 59% :mad:, respectively. CONCLUSIONS: This study demonstrates the effective long-term cancer control achieved with HIFU in patients with low- or intermediate-risk localised prostate cancer." This was actually a fairly low risk group, all stage T1 or T2, but with a Gleason up to 7 allowed in the series. Frankly, the failure free rates do not seem nearly as good as the rates achieved by surgery and radiation, especially considering that the average patient in this HIFU series was low risk or not more than intermediate risk. :( On the other hand, results for most therapies improve as they mature, and that may turn out to be the case with HIFU.

Here's another line of evidence. I use the Prostate Cancer Research Institute for its information to survivors on therapies, and PCRI has not yet addressed HIFU in a broadcast manner, though I found information when I dug for it. HIFU has not yet been presented at the series of nearly annual National Conferences on Prostate Cancer, this year with PCRI as the main sponsor, that are aimed primarily at informing survivors. The National Conference on Prostate Cancer series is not shy about introducing promising investigational assessment and treatment technologies, especially when patients are curious about them as they are about HIFU, so I find it unfavorably significant that HIFU has not yet been included.

Personally, with the other options now available, if I were a low risk patient considering my options, I would not want to be part of the HIFU learning curve unless my HIFU doctor had diligently kept records of his patients for at least five years and could convince me that his five year followup patients were doing very well.

Jim

Very well said Jim, as usual. I wonder if Cryo has a similiar profile as a primary treatment?
Bob