Why not HIFU?

Hello Curious,

For starters, it's not approved for use in this country. Probably will be in a few more years, but not currently. That means no body's health insurance is going to pay for it. So a person would have to have the means to pay on their own, and the expenses of traveling outside of the US for treatment.

There are many "amazing" claims about HIFU. Until such a time that it is a standard approved treatment method in the US (And I am assuming you are from the US), there is going to be a certain amount of risk undergoing it. As far as side effects, all primary treatments have their own unique side effects and risks, HIFU is no exception.

I am undergoing salvage radiation right now, and when I consulted 3 different radiation oncologist before settling on the one I did, I asked them each seperately about HIFU. All 3 of them agreed that they would never use or reccomend it, even when it does eventually get approved. They all thought it was a risky procedure, and that their clinics would never use it. That's just 3 doctor's opinions, don't know if its typical or not.

David in SC

In order to post links we need to know you a little better. Sorry this link was deleted only due to that issue...

Tony

Post Edited By Moderator (TC-LasVegas) : 10/12/2009 3:32:17 PM (GMT-6)

Jerry/UK

I will be real interested in hearing details about your HI-FU journey now that you have decided on that path. I hope I represented the option in fair terms. My only personal concern on your choice, and I certainly don't know your general health or medical history, is that you are biopsied as a strong gleason 7 (4+3), my own dr. would consider that a reasonably agressive situation, especially if the 4+3 holds true.

Many here will want to hear about the pre-procedure, procedure, and post procedure details. I sincerely hope this works for you, and that you don't have any adverse complications or side effects.

Please keep us posted.

David in South Carolina

Hello curious wife, welcome to the place no one wants to have to be. I'm sorry your husband has been diagnosed with PCa.

I suggest the first thing you need to do is have his slides reread by a different pathologist --- someone who has lots of experience with prostate tissue. My first read was the same as your husband's, a 3+3. The second read said 3+4. Both pathologists were experienced prostate people. I figured I was 6.5 !

If I'd remained a 6 I would likely have had HIFU with Bill Orovan at his Toronto clinic. HIFU has been used in Germany, France, Japan, all sorts of places, for several years and from what I could tell if you take the five year trend lines and extrapolate them out HIFU would hold its own, result wise, with any other treatment. In simple terms, again best I could understand, HIFU cooks (kills) the prostate not unlike radiation but without some of the issues. The things that attracted me to HIFU were that it doesn't rule out any other treatment afterwards if not successful, including surgery. It is non-invasive. The stats for incontenance and ED are attractive. While not enjoying the long term track record of surgery, tens of thousands of men have had this proceedure in the past 10 years. And, when I talked to a urologist friend with one of the big name clinics in the U.S. about the negative reaction many doctors have to HIFU (see David's post above) he laughed and said I should have seen the what surgeons had to say about da Vinci when it first came along. For me, HIFU was a pretty near no downside option as likely to cure me of this disease as surgery.

The reason the downside was pretty near, and not total, wasn't a medical issue for me. It was a personality issue. With HIFU there is no pathology afterwards. No nodes to have a look at. One doctor, not the HIFU doctor, said that was true, but what did I care? After treatment, be it surgery, or HIFU, the only thing that mattered was PSA. With either treatment the measure of success wasn't the pathology, it was a life time of PSA zeros. However, I knew that when I went from being a Gleason 6 to a possible Gleason 7 my personality type was such that I would not rest easy without a pathology report. And so I went the da Vinci route and now, with the combination of the 'excellent' pathology and my first zero PSA I sleep well at night. That's just me though. Others can be happy knowing that PSA is the real issue after treatment, and pathology is yesterday's story. And there are lots of people here to prove that right. But, I'm a happy camper with my pathology report. If my PSA starts to rise is isn't worth squat though, and if my PSA stays at zero, it isn't worth squat. Yet, I know without it I'd not be happy.

I think your decision tree is first, do you want surgery (the tried, true, and tested "gold standard") or are you happy, because it is a low grade disease, (confirmed by a second read) with one of the other treatment options. Then, if you are happy with one of the other treatment options the only valid reason not to have HIFU on your list of possibilities is cost. If cost is not an issue, then I believe HIFU along with seeds, freezing, watching and waiting, etc. deserves consideration. You may decide to go with one of the other options. Each has it's good points and not so good points. The only case I make for HIFU, is that if your decision tree moves you away from surgery, and if cost is not an issue, then it is a mistake to not investigate HIFU as you would the other options.

You'll find out that there are differences of opinion in this forum, as there are with doctors. You'll also come to learn if you keep coming here and asking questions that as much as we may have differences, it makes no never mind to any of us what you decide to do --- except each of us wants to help you make the best decision as to what YOU feel is best for you and your husband. In the end there are no right answers, just choices with consequences that you and your husband will have to assess and live with. Husbands and wives here have all been there, or are on the decision journey with you. In our dark hours folks here helped us, challenged us, bullied us, and held us, through decisions and treatments and now we all feel an obligation and need to help others --- not because we have an agenda, but because we care. I think the above exchange between David and Jeremy is ample evidence of this.

I hope the above is helpful and I hope you'll continue to vist, let us know how you're doing, and do us the honor of asking for help/guidance when you have questions. This forum is full of great resources.

Sheldon AKA Sleepless

Yep, you're reading him wrong.... IMO, he was just pointing out the varied opinions and discussion about Jeremy's planned treatment between he and you. Nothing more, I think.

Thanks James, and apologies to you David --- I obviously didn't express myself well.

I thought the exchange between you and Jeremy was the "best of" of this forum and showed how we all come at things from different angles and with different experiences but this common bond we share isn't about telling people what they "have" to do (aside from getting a second slide read, which is always my hobby horse, lol) but about helping each other reach the best decision for them.

David, you and I are singing out of the same hymn book. In your fine words, ".... it is all about choices and consequences, and while we do our best to gain knowledge on these choices, in the end, we make them, and have to live with those choice(s). That's all any of us can do."

That deserves to be cast in bronze and put on the mast head.

Here in Canada we are celebrating Thanksgiving this weekend. If we waited for the American Thanksgiving, all our turkeys would be frozen and we like fresh turkey. I have much to be thankful for --- not least my friends here.

Sheldon AKA Sleepless

Purgatory said...
Hello Curious,

For starters, it's not approved for use in this country. Probably will be in a few more years, but not currently. That means no body's health insurance is going to pay for it. So a person would have to have the means to pay on their own, and the expenses of traveling outside of the US for treatment.

There are many "amazing" claims about HIFU. Until such a time that it is a standard approved treatment method in the US (And I am assuming you are from the US), there is going to be a certain amount of risk undergoing it. As far as side effects, all primary treatments have their own unique side effects and risks, HIFU is no exception.

I am undergoing salvage radiation right now, and when I consulted 3 different radiation oncologist before settling on the one I did, I asked them each seperately about HIFU. All 3 of them agreed that they would never use or reccomend it, even when it does eventually get approved. They all thought it was a risky procedure, and that their clinics would never use it. That's just 3 doctor's opinions, don't know if its typical or not.

David in SC

      Hey David:

   I have heard that the reason  HIFU has not been approved in the US has nothing to do with the efficacy of the HIFU treatment --rather it has more to do with the lobby of the urologists and radiographers  to keep it out. Do you think there is any truth to this particularly given the success of the HIFU procedure all over other parts of the world?

I think that the only point not covered, is that if and when HIFU is approved by the FDA and other regulatory bodies, it will be many years before any health plan covers it. All health plans have their internal processes in regards to covering new treatments and I would guess it will take another 5 to 10 years for any health plan to cover HIFU.

I don't ever see it as being a "Mandated Benefit" under any state's health insurance rules. Which is where the real lobbying happens.

Dear Curious:

In specific answer to your question, I seriously considered HIFU but this not choose it for the following reasons:

1.  It is not FDA approved in the USA so I was a little leery about undergoing a non-approved treatment regardless of non-US success.

2. It is difficult to get good data (other than anecdotal) on both the cure rate and the SE's.

3. Because I was a G7, I was not eligible for the US clinical trials.  They are cherry picking the easist cases for their trials.

4.  My insurance would not cover it so I would have been looking at thousands of $ paid out of pocket.

5.  In my particular case, there was another option (brachytherapy) that offered high chances of cure with and low SE's.

Hope this helps,

Tudpock

Ok, I would definitely get a written approval from the Medical Management Authorization Department of both those health plans before going any further. Both of these might reimburse at those  rates but if you are on a High Deductible plan ($10,000 annual) and $15,000 out of pocket/co-insurance, those two limits would have to be met before anything was paid.

It seems to me that the insurance companies would be prudent to cover HIFU because the cost is $25,000 as opposed to 60,000+ for surgery and 100,000+ for radiation.

Those numbers are inaccurate as well as other claims by some of the HIFU faithful.. My surgery was 28g. I did not receive the bill for the radiation, but I believe I heard around 40k. I also have done well with my surgery, and have the satisfaction, er or dissatisfaction, of knowing my prostate pathology. I would not base my decisions on propaganda like cost.

I wonder why anyone would place such an importance on cost when fighting cancer.

Tony