hifu...

i was recently diagnosed and have been looking for more affordable hifu.  was told italy was only about 6 thousand us dollars....has anyone learned this to be true, and if so, which hospital/city??  and how much experience do they have with hifu?

Ametlub, welcome to this board. if you don't mind posting your psa history and biopsy stats you will probably get some more useful information about HIFU and other treatment options. if that would be of interest to you.

Hi, Ametlub

You're probably aware that you have an early stage cancer relatively low grade and so you have a lot of treatment options. You could certainly take a couple of months to learn more and shop around without hurting your prospects. Few people here have the resources to select a mode of treatment that is not covered by insurance, and as you know HIFU is not yet approved in the US. So probably not many here have had direct experience with it.

If I may be direct, I think there is a psychological dynamic here where if you have the money to buy something that other people don't have the means to buy, it must mean that somehow the thing in question is "better" than what is available to the rest, and therefore you should do it if you can. I appreciate the sentiment. I looked a HIFU but was not convinced it was the right approach for me, and I chose surgery. As Fairwind has said, there research is by no means persuasive that HIFU is effective irrespective of the cost. What we seem to know is that it has less side effects than other treatments but also is less effective in eliminating the cancer than other treatments, and that the patients therefore need to chosen VERY carefully.

It takes a long time to get solid incontrovertible data on prostate cancer treatment because in most cases of people diagnosed early on due to PSA screening, who are asymptomatic and have relatively long PSA's the large majority would live more than a decade even if they were not treated at all. So a study needs to be very long range if it is to measure prostate-cancer specific survival or even clinical progression (meaning actual symptoms as opposed to biochemical recurrence which simply means a rising PSA.) For example , here we are in 2012 still having scientists debate whether PSA screening is worthwhile, even though it has been in widespread use since 1994 and so there is 18 years of data available for study!

Search this site and others (Yananow, prostate cancer info link) for discussion of HIFU and you'll see the controversy about the research. If you have a bit of technical background and can wade through the abstracts of scientific papers, search pubmed.com as well. Ignore any and all studies not published in scholarly journals.

Sometimes the decision also takes into account how old you are and what other medical issues you may have that affect expected lifespan. For many PC cases, radiation and surgery have roughly equal rates of cancer control or cure, but in surgery the side effects are worst on day 1 and may gradually improve, whereas with radiation the side effects tend to increase over time. If you are older and/or in poor general health, that would weigh on the side of HIFU.

Have you ruled out other treatments at this point?

Have you read Walsh's book, or Scholz' or Meyers? All are good, probably in that order for an early-stage, low/intermediate grade guy like you.

Regardless of what treatment approach you select, I think the amount of experience and track record of the individual surgeon or radiologist is by far the most important variable determining the success of treatment. I don't think the number of treatments done in a country matters at all, or even the number done in the particular hospital. The only thing that really matters is the experience and skill of level of the particular doc who will be laying their hands on you.

When looking for "real" research results, try your local library (or even their website) to see if they have access to a journal database (as such things are not generally available free on the wider web, or at least much less so.) However, if all you want is confirmation of your apparent decision that HIFU must be a great therapy because you can't get it here, you may not find those results, because they may not exist. They certainly didn't in October. ;-)

Pubmed is on the wider web, but often only has references to where the articles can be found, not on the wider web. They have 385 results on "HIFU and Prostate Cancer" - enjoy.

www.ncbi.nlm.nih.gov/pubmed/

here's a 2012 result from Korea that might give you pause (quoting snippets from the abstract at pubmed):

Seven years of experience with high-intensity focused ultrasound for prostate cancer: Advantages and limitations. said...
The overall BCR rate was 59.5%, and median time to BCR was 13.8 months.....CONCLUSIONS:HIFU treatment does not provide effective oncologic outcomes even in low risk patients with prostate cancer...

I don't know any details of that study - I just went looking for a quick sampling of what was on pubmed and read the abstract. My take from my pre-procedure research done August-October was that HIFU was just not terribly effective - and upon further consideration, the "upside" of "only treating the cancerous area" made less sense when considering that the rest of my prostate was "high grade PIN" - ie, precancerous. So if it did exactly what it was supposed to do, the remaining tissue would go on and move from "pre-" to "cancerous" and I'd have to go back again. That, at least, is what my "not a doctor" "but I do grasp science" analysis lead me to think, when I thought it through and sorted out why prostatectomy was always "radical" (ie, taking the whole thing.)

One of the upsides of being 47 is that odds for recovery are better. On the other hand, I really wanted something that would be good for 3-4 decades...

In my case, the nerve sparing seems to have worked, but that is a gamble you take. There are ways to deal with ED if it does not work.

Incontinence-wise I'm 4 months out and have been leaking at 1-pad per day or less since the catheter came out, but that is gradually improving, and it's too early to get excited about it.

Post Edited (RandomPseudoNym) : 2/28/2012 7:49:55 AM (GMT-7)

Ametlub, After reading this thread, I get a sense that your decision-making process is being governed by (1) a hope to avoid side effects, and (2) a fear of surgery, which leads you to a search for a "magic bullet" kind of treatment, which you feel you've found in HIFU.

My surgeon had only done about 50 robotic surgeries, but he had done the open procedure for many years and most importantly, he's known as an excellent surgeon, which is extremely important. High numbers are important, but even more important is that the individual is an excellent surgeon. So, even though my surgeon was low volume in terms of DaVinci procedures, I have gradually come to agree that finding someone who is both an excellent surgeon and who has demonstrated proficiency in the DaVinci procedure over the course of many procedures is of paramount importance.

Whether or not to spare the nerve bundle will be apparent to that surgeon in the course of the procedure. As my doctor said, he could have spared my left nerve bundle if he didn't care whether or not my cancer would recur. However, given the location of the primary tumor and the proximity of the nerve bundle, the safe thing to do was to remove that bundle.

You really can't "ask for the nerve sparing procedure." You can hope the nerve bundles can be spared, but the surgeon really won't know if that can be done until he is able to see, or in the case of open surgery even "feel" the situation as it exists in the area of the prostate.

You're relatively young (meaning you're younger than I am :) ), and so I hope you will choose a procedure which has the greatest likelihood of successfully providing you twenty or even 30 more years of life. That's what guided me, and I'm a bit older than you, but hopeful of living into my 80's. After Davinci surgery, I'm fortunate to be perfectly continent, and even though I have ED, my wife and I have a satisfying and fulfilling sex life.

Good luck to you in your decision.

Whether or not nerve sparing is an option is a matter of where the tumor(s) is(are). Pick a good surgeon and let them decide.

That (and my age indicating that I'd almost certainly have it grow to the point where I'd eventually remove it) was one reason I decided to get off my butt and do it, rather than dither with surveillance and growth and THEN remove it. If I'd had doubts that I would remove it, might have been different, but not a difficult logic problem as it was. That's from the point of view of BOTH nerve sparing and (somewhat more importantly) not having dear old mutant Elvis leave the prostate before the prostate left me.

The guy I went with is a robotic specalist, but younger - ~ 350 prostates in line ahead of mine, but the guy has been doing DaVinci since the start of his career (or, moved from video games to DaVinci, if you like - but he probably still plays video games, so that may not be accurate.) He also does other urologic surgery with the robot, so he's not a prostate-only guy. My gut reaction to him was good.

I ended up choosing him over a guy who has done more, but was much more of a pain for me to get to, and does two a day (my guy does one a day.) I liked them both and could have happily gone with either, just made the choice I made and have been happy with it.

I guess I didn't actually have the report of High Grade Prostate Intraepithealeal Neosplasia (bet I spelled one or both of those wrong) until post-operative pathology (and then I had to look it up.) So I had decided ahead of time (and that just helped to confirm it) that if the prostate was prone to going cancerous, removing (or frying) only part of it at a time was just going to mean the remaining (or unfried) part getting cancer if one or more parts already had.

if prescript is right about "with surgery you are sure they took the whole gland" then why do so many of us go back for radiation after surgery and still have cancer.? And he says you can be sure they radiate the whole gland, but yet only the tumor is treated with HIFU. I don't believe so, the aim is to treat the whole gland, within reason of caution, sometimes they don't radiate the whole gland, sometimes they don't HIFU the whole gland, we surely don't know why cancer comes back in so many cases no matter what you chose, but it does.

ametlut,
The attached article summerizes the latest published data on HIFU and it is not very encouraging.
http://www.prostate-cancer.org/pcricms/sites/default/files/PDFs/Is14-1_p14-20.pdf
If you are concerned with the side effects of surgery there are other options that have a better record on maintaining potency and similar cancer control as surgery for intermediate grade cancer, such as Brachytherapy, both low and high dose and IMRT or IGRT. You should research these options as an alternative to HIFU as they have good long term data as to both cancer control and quality of life issues.