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curious wife
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/11/2009 8:15 AM (GMT -6)   
After reading (on this forum and others) the many heart rendering accounts of the misery caused by the side effects from surgery or radiation treatment, I was just wondering why HIFU wouldn't have been the first choice for treatment for early diagnosed cases of prostate cancer? Is it the cost or is it that the claims seem too good to be true?
Husband, Age 55, diagnosed 6/09, PSA 6, Gleason 3+3, T1c, biopsy 6/10


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 8:46 AM (GMT -6)   
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
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - first treatment IMRT.


lewvino
Regular Member


Date Joined Jul 2009
Total Posts : 384
   Posted 10/11/2009 9:21 AM (GMT -6)   
I took a brief look at HIFU but as David said when I found out that I would have to go out side of the country for treatment, That insurance would most likely not pay for it plus the cost involved I left my decision stand with DaVinci. I'm doing very well following Davinci and still very happy with my choice.

Larry
Father treated for Prostate Cancer in 1997 with Proton Beam - Still doing well.
My Stats
Age at diagnosis 54, PSA 5.1
Biopsy 04/08 12 cores, 5 positive
Gleason 3 Cores at 4+3=7, 2 Cores at 3+4=7
Perineural Invasion Noted on biopsy

Robotic surgery 08/12/09 at Vanderbilt, Nashville TN. 
 
Post Surgery - Dr. Spared 100% of Nerves on the left side.
Estimated that 50 - 70% of the nerves were spared on the right side.
 
Final Path report
20% of the prostate Invovled
Tumor graded at T2C
Overall Gleason 3+4 (7)
Lymph Glands Clear
Positive Margin 1.8 cm in length Noted in Right Apex


redred232
New Member


Date Joined Oct 2009
Total Posts : 1
   Posted 10/11/2009 9:31 AM (GMT -6)   
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)


JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 10/11/2009 10:14 AM (GMT -6)   

Hi Curious,

Purgatory is absolutely correct in that HIFU is not yet approved in the USA, or the UK. I believe, but I'm not certain, that it is 'approved' in some other European countries. I'm afraid that the claims regarding HIFU have, in some cases, been somewhat over-exaggerated, which has understandably led to a degree of uncertainty about just how good or not good it may be.

As Purgatory says, HIFU has side effects and risks associated with the procedure. A little bit of Internet research will probably make these clear, as long as you stay away from the websites run by the manufacturers of the HIFU equipment!

One of the main concerns about HIFU at the moment is the lack of a longer term oncological data. Biochemical success after five years is possibly in the same ballpark as other forms of treatment, but once you get to 10 and 15 year outcomes HIFU does not have 'solid' data, compared with surgery, brachytherapy, and EBRT. I think this lack (so far) of longer term data is particularly relevant when considering someone as young as your husband.

Having said all this, I have opted for HIFU after spending a considerable amount of time considering other options. However, I am 12 years older than your husband. And yes, cost certainly is a factor. I shall be spending quite a large amount of money to be having HIFU treatment privately. My treatment is scheduled for 30th October.

It has been repeatedly stated at this forum, and at others, that perhaps the most important decision alongside what type of treatment to go for - if any - is to choose a surgeon who is very well practised in whatever procedure you choose. If you decide to follow up on the possibility of HIFU, you will see that there are two different types of equipment used for the procedure, both of which claim to be the superior method and which utilise slightly different techniques. My own feeling is that the experience of the operator is of greater importance than the type of equipment.

If you go to the Yananow website (http://www.yananow.net/Links.html) and click on 'Experiences' you will find there are a large number of stories written by people with experience of various forms of treatment for PCa, including HIFU.

Cheers,

Jeremy


Age - 67
PSA – 7.8 ug/L. in February 2009
Gleason – 7 (4+3).  T stage – 2b.   Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate with a view to Brachytherapy but considering HIFU
September 2009 - prostate reduced in size but flow still to slow to allow brachytherapy.  Told that surgery is only option
September 2009 - decided on HIFU.  Scheduled for 30th October 2009


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 10:31 AM (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


Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - first treatment IMRT.


JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 10/11/2009 4:48 PM (GMT 0)   

Hi David,

I plan to post details at this website about my experience with HIFU.

You are quite correct that my Gleason is fairly 'strong'. However, biopsies so far (including a template guided biopsy), MRI scan and bone scan appear to indicate that the cancer is still confined within my prostate. I understand - I hope correctly - that if this is the case, there is a fighting chance that HIFU will be able to deal with the PCa in my prostate. I guess by about six weeks after the treatment, I will have my first indication as to how successful, or otherwise, the HIFU treatment may have been.

It's not been an easy decision, but brachytherapy ceased to become an option for me because of poor flow, despite ADT, so I was facing the prospect of surgery or HIFU. I realise that EBRT might have been a possibility, but it is not one that, to date, has been offered to me by my local urology department. If HIFU it should prove not to be successful the first time around, I am still left with the possibility of repeat HIFU, EBRT or a radical prostatectomy.

Cheers,

Jeremy


Age - 67
PSA – 7.8 ug/L. in February 2009
Gleason – 7 (4+3).  T stage – 2b.   Prostate size - 52 cc
July 2009 - ADT for 3 months to shrink prostate with a view to Brachytherapy but considering HIFU
September 2009 - prostate reduced in size but flow still to slow to allow brachytherapy.  Told that surgery is only option
September 2009 - decided on HIFU.  Scheduled for 30th October 2009


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/11/2009 10:57 AM (GMT -6)   
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
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 11:13 AM (GMT -6)   
Am I reading you wrong, Sheldon? the exchanges between Jeremy and myself are informative and civil with not a hint of agressivness. Just comparing notes.

David
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 10/11/2009 11:18 AM (GMT -6)   
Yep, you're reading him wrong.... turn IMO, he was just pointing out the varied opinions and discussion about Jeremy's planned treatment between he and you. Nothing more, I think.
James C. Age 62
Co-Moderator- Prostate Cancer Forum
4/07 PSA 7.6, referred to Urologist, recheck 6.7
7/07 Biopsy: 3 of 16 PCa, 5% involved, left lobe, GS 3/3=6
9/07 Nerve sparing open RRP 110gms.- Path Report: GS 3+3=6 Stg. pT2c, 110gms, margins clear
24 mts: PSA's: .04 each test since surgery, Bimix .3ml PRN or Trimix .15ml PRN


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 11:21 AM (GMT -6)   
Ok James, as any that knows me, knows, I am not opposed to any one treatment method over another. I support fully a man's decision once it has been made.

I think Sheldon is quite right, 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.

David
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 10/11/2009 12:47 PM (GMT -6)   
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
Age 67 in Apil '09 at news of 4 of 12 cores positive T2B and Gleason 3 + 3 and 5% to 25% PSA 1.5
Re-read of slides in June said Gleason 3 + 4 same four cores 5% to 15%
June 29 daVinci prostatectomy, Dr. Eric Estey, at Royal Alexandra Hospital Edmonton one night stay
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9, so far, so good
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  0.02
Oct 1st 09 -- dry at night, during day some stress issues, but better every week.    


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 1:29 PM (GMT -6)   
Sheldon,

Sorry I misinterpeted your earlier post, sometimes I get touchy too. Your posts are great and its a rare day day that I don't agree with you on things.

My salvage radiation will end the day after the American Thanksgiving in late November, not sure how much I will be enjoying it if my level of nausea keeps increasing.

So enjoy yours for me. Best to you brother.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 10/11/2009 8:28 PM (GMT -6)   
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?
 
63 years old-tumor discovered on digital exam- biopsy December 2008-
4 of 12 samples positive-all on right side
Gleason 3+3=6
PSA-3
Otherwise excellent health.
Brachytherapy- May 19, 2009 -so far, so good.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/11/2009 9:21 PM (GMT -6)   
mjluke,

you very well may be right. the various medical related lobbyists have tremendous power here in the US. I have never questioned the effectivness of HIFU, especially in the countries where it is permitted. I do find it interesting how much distaste there is towards HIFU even in the small circles of doctors I know or are in contact with. But then, I have found the same reaction locally when the subject of Proton treatments come up in my area.

It's way over my head, that I know.

David in SC
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 10/12/2009 9:53 AM (GMT -6)   
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.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25380
   Posted 10/12/2009 10:08 AM (GMT -6)   
hb,


Think you are quite correct too. Aside from the FDA approval process, they would have to greatly reduce the cost of HIFU if there is even a ghost of a chance of the major insurance carriers approving it. Kind of a catch 22, because when in limited use, cost per treatment will be higher, more patients on, can bring the overall cost down. The what came first, chicken or the egg thing.
Age: 57, 56 dx, PSA: 7/07 5.8, 7/08 12.3, 9/08 14.5, 10/08 16.3
3rd Biopsy: 9/08 - 7/7 Positive, 40-90% Cancer, Gleason 4+3
Open RP: 11/08, Rht nerves saved, 4 days in hospt, on catheters for 63 days, 5th one out 1/09
Path Rpt: Gleason 3+4, pT2c, 42g, 20% cancer, 1 pos margin
Post Surgery  PSA: 2/09 .05,5/09 .1, 6/09 .11. 8/09 .16
Latest: 7/09 met 2 rad. oncl, 7/09 cath #6 - blockage, 8/9 2nd corr surgery, 8/9 cath #7 - out  38 days, 9/14/9 - met 3rd rad. oncl.agree to start radiation, mapping on 9/21/9, 9/24 - mtg with uro/surg, 9/29- pre-op, 10/1 - 3rd corr. surgery - suprapubic cath/hard dialation, 10/5 - began IMRT SRT - 39 sessions/72 gys.


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4149
   Posted 10/12/2009 10:42 AM (GMT -6)   

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


Age 62, Gleason 4 +3 = 7, T1C, PSA 4.2, 2 of 16 cores cancerous, 27cc
Brachytherapy December 9, 2008.  73 Iodine-125 seeds.  Procedure went great, catheter out before I went home, only minor discomfort.  Regular activities resumed, everything continues to function normally as of 9/1/09.  6 month PSA  1.4 and my docs are "delighted"!

curious wife
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/12/2009 11:02 AM (GMT -6)   
Thanks for all the info, although I heard that Anthem/Blue Cross reimburses 100% and that Aetna covers 50% of HIFU treatment.
Husband, Age 55, diagnosed 6/09, PSA 6, Gleason 3+3, T1c, biopsy 6/10


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 10/12/2009 11:41 AM (GMT -6)   
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.
Age 60, PSA 2007 4.1, PSA 2008 10.0
Diagnosed April 2008, Biopsy: 6 of 12 cores positive, Gleason 4 + 5 = 9
CT and Bone Scan negative, Open surgery at Shawnee Mission Medical Center May 21, 2008
Right side nerves spared, Radical prostatectomy and lymph node dissection
Cather removed on June 3rd, totally dry on July 9th, pT2c, lymph nodes negative
PSA Sept 28, 2008 0.00, PSA Jan 22, 2009 0.00, PSA June 29, 2009 0.00
ED Status- Currently using Trimix, Levitra daily for increased blood flow.
Noctural Erections have completely returned on a nightly basis, same hardness as before.


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/12/2009 3:45 PM (GMT -6)   
Good advice HB,
Don't do anything based on a verbal approval over the phone with an insurance carrier, or anyone for that matter. Also ask key questions such as if anything goes wrong what will the insurance cover when the work is performed out of country. HIFU will be approved for the US in the coming next three to five years. Possible sooner if the Emberton study in London gets grand fathered by the FDA. Still there will be questions about it's long term effectiveness against cancer, but time will give us clearer picture of that. We know SE's are fewer and that's a good thing.

Tony
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!


curious wife
New Member


Date Joined Oct 2009
Total Posts : 4
   Posted 10/12/2009 8:08 PM (GMT -6)   
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.
Husband, Age 55, diagnosed 6/09, PSA 6, Gleason 3+3, T1c, biopsy 6/10


goodlife
Veteran Member


Date Joined May 2009
Total Posts : 2691
   Posted 10/12/2009 8:57 PM (GMT -6)   
Not sure where you are getting your numbers, but insurance companies pay way less than those amounts.

However, it would seem that a probe and some high frequency energy waves would or could be cheaper.
Age 58, PSA 4.47 Biopsy - 2/12 cores , Gleason 4 + 5 = 9
Da Vinci, Cleveland Clinic  4/14/09   Nerves spared, but carved up a little.
0/23 lymph nodes involved  pT3a NO MX
Catheter and 2 stints in ureters for 2 weeks due to anatomical issues with location of ureters with respect to bladder neck.  Try 3 tubes where no tubes are supposed to be for 2 weeks !
Neg Margins, bladder neck negative
Living the Good Life, cancer free  6 week PSA  <.03
3 month PSA <.01 (different lab)
5 month PSA <.03 (undetectable)


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 10/12/2009 9:15 PM (GMT -6)   
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
 Age 47 (44 when Dx)
Pre-op PSA was 19.8 : Surgery at The City of Hope on February 16, 2007
Gleason 4+3=7, Stage pT3b, N0, Mx
Positive Margins (PM), Extra Prostatic Extension (EPE) : Bilateral Seminal vesicle invasion (SVI)
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (May 11, 2009): <0.1
 
My Journal is at Tony's Blog  
 
STAY POSITIVE!

Post Edited (TC-LasVegas) : 10/12/2009 10:03:44 PM (GMT-6)


Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4106
   Posted 10/12/2009 9:30 PM (GMT -6)   
It will be exciting for us to get the reports of one of our own going through the procedure. Please do keep us updated. As always we support each other and do wish each other the best of success in the treatment. This may be the treatment of the future. Too late for me but I think in time my 32 year old son may be looking down this same path and I would love to be able to tell say that this treatment kills the cander and keeps the willie working like new. Time will tell.,

Jeff T
Jeff T Age 57
9/08 PSA 5.4, referred to Urologist
9/08 Biopsy: GS 3/4=7
10/08 Nerve sparing open RRP- Path Report: GS 3+3=7 Stg. pT2c, margins clear
3 mts: PSA .05 undetectable
 10th month  PSA <0.01
ED- 5 mg Cialis daily, pump daily, going to try MUSE next

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