New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 1/20/2009 12:21 PM (GMT -7)   
Anyone familiar with this treatment. Does not involve surgery but instead uses a High Intensity Focused Ultrasound ( HIFU ) beam which destroys the cancerous prostate tissue with minimal side-effects. Apparently it is big in Europe and available and approved in Canada but not in the US.  

Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 1/20/2009 12:38 PM (GMT -7)   
Another new guy, GPG (Scot) was just telling me about HIFU last night. I hadn't heard of it before, perhaps he will see your post and answer you.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 1:58 PM (GMT -7)   
Welcome, I am the new guy referred to in the previous post.

I learned about HIFU in researching clinical trials for recurrent protate cancer.

I have had a robotic radical, followed up by high dose IMRT.

It was disclosed later that the original surgery left over half my prostate and apparently the IMRT did not or has not yet killed it all. May never as radiation effects non cancerous tissue differently than cancerous tissue.

I think it is a great treatment option and it is only a matter of time before it acheives FDA approval as a primary treatment.

I suggest you do some web searching, you will find several providers located in the states and learn about the treatment. I do not want to attempt to influence you further except to say that had I known about the procedure two years ago I would have been very interested.

Good luck. Please tell us more about your particular circumstance.

Scott
Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Purgatory
Elite Member


Date Joined Oct 2008
Total Posts : 25353
   Posted 1/20/2009 2:10 PM (GMT -7)   
Thanks, Scot, for poping in here for this.
Age 56, 56 at DX, PSA 7/7 5.8, 7/8 12.3, 9/8 14.9, 10/8 16.4
3rd Biopsy 9-2008 Positive 7 of 7 cores positive, 40 - 90%, G 4+3 & 3+4
Open RP surgery 11/14/8, Non-nerve sparing, 4 days hospital, staples out 11/24/8, Catheter out on 12/15/8. Stopped flowing, new catheter put in 12/16/08, Catheter out 12/29/08. Emergency room put in Catheter # day 45, 1/5/9 - Cath #3 out, dr. did cycloscope, saw potential blockage, put in Catheter #4, 1/13/9 - removed blockage, put in Cath #5, 1/19/9 -out
Post-surgery Pathlogy Report:Gleason 3+4=7, pT2c, 42 grams, tumor 20%, Contained in capsular, clear margins, clear lymph nodes 
First PSA Post Surgery  Scheduled now for 2/9/9
 
 


Tudpock18
Forum Moderator


Date Joined Sep 2008
Total Posts : 4015
   Posted 1/20/2009 5:32 PM (GMT -7)   

Dear MJ:

HIFU is being used fairly extensively in Canada as well as in Europe.  If you Google HIFU you can get tons of info.  There are clinical trials underway in the USA but, as others referenced, this treatment is not yet approved by the FDA for broad treatment of PCa.  Therefore, this protocol is not approved nor paid for by most US medical insurance.

I actually researched this fairly extensively along with many other options as I had early stage cancer with multiple treatment opportunities.  If I had felt in my heart that this was right for me, I would have found a way to pay the $30K and done it.  However, I finally decided that I wanted a treatment with longer term verified results, so I narrowed it down to radiation and surgery...ultimately choosing radiation. 

I suspect that HIFU will ultimately be approved by the FDA, become insurance reimbursable here and become another option from which we can confidently choose.  However, for me anyway, I wanted something a little more proven.

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 12/30/08.


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 5:38 PM (GMT -7)   
Not to be controversial but I am informed that my insurance and many others have provision to cover HIFU as it is a recognized treatment in many other countries.
 
Please do not discout the treatment because you are concerned your insurance might not cover it.  Ask.
 
Scott
Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/20/2009 5:44 PM (GMT -7)   
Currently,
HIFU is only available in a clinical trial in the US. The FDA will likely approve the procedure in 2009. It should be noted that Focalized treatments do not offer a more curative result but rather are intended to spare as much tissue as possible without harmful radiation or invasive open surgery. HIFU is still a surgical procedure however, but is promising to be an option for less side effects.

PCRI HIFU Insights:
http://www.prostate-cancer.org/education/novelthr/Chinn_TransrectalHIFU.html


Just a note: No doctors should be offering to take a patient out of the US to perform this procedure. It raises real ethics, malpractice, and insurance issues, at least in my opinion. But I have heard that doctors can be certified for doing so. You can contact PCRI and get a referral in the ongoing trial for treatment in the US.

Tony


Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 6:44 PM (GMT -7)   

Just a note: No doctors should be offering to take a patient out of the US to perform this procedure. It raises real ethics, malpractice, and insurance issues, at least in my opinion. But I have heard that doctors can be certified for doing so. You can contact PCRI and get a referral in the ongoing trial for treatment in the US.

Tony

Not to dismiss Tony, but there is not reason to think that to take someone out of the states to perform a procedure which is acceptable in many other countries is unethical.
HIFU is an accetped procedure in many countries and I am convinced in some cases it is superior to radiation and cryo.
Please do not discount it.
 
Scott

Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 1/20/2009 7:04 PM (GMT -7)   
Thanks for all your responses.
 
I am early into this and have spent some time reading old postings to this forum. I am encouraged and somewhat overwhelmed with the wisdom,courage and sensitivity displayed.
 
I am presently researching various treatment options, including HIFU.
 
Frankly the side-effects of treatment concern me more than the diagnosis, given my Gleason scores and PSA (almost as good as it gets as I understand it from my research.. to date).
 
Is there any way to predict with any relative  certainty how long one could maintain a decent quality of life without any treatment whatsoever. given particular Gleason scores, PSA's and overall health?
 
I'm sure the answer is you take your chances, however I would appreciate any comments.
 
 
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


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/20/2009 7:13 PM (GMT -7)   
mjluke said...
 
Is there any way to predict with any relative  certainty how long one could maintain a decent quality of life without any treatment whatsoever. given particular Gleason scores, PSA's and overall health?
 
I'm sure the answer is you take your chances, however I would appreciate any comments.
 

Nope, no real way to predict, but you have hit the thorny nail on the head.
 
In your case if you can determine by nuc scan that your cancer is local and if you are a healthy, fit individual I would suggest either open anatomical or robotic radical by a very practiced surgeon.  But I am also convinced that HIFU is a good procedure which is being delayed approval due to ressons not to do with the efficacy of the procedure.
 
Scott
Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/20/2009 7:36 PM (GMT -7)   
Scott,
I bet the FDA won't agree that it isn't a question of ethics. And neither would the AMA. I do understand that HIFU is in practice in other countries. I'm not discounting HIFU. I know it works like other ablation therapies. But if a doctor came to the US to recruit patients for his over seas practice he raises real ethics issues. We had a Urologist at our Us Too chapter meeting discuss HIFU as he was gearing up for the clinical trial. The topic of going overseas to do it came up. He said in no way would he ever suggest to a patient ~ as he said "meet me in the Phillipines" because it could and likely would cost him his license here. He called it a violation in Moral Turpitude of a community that does not allow that practice. I believe that HIFU may indeed be legalized here but for now it isn't except in a clinical trial. Why would a doctor circumvent that process here during that trial when he could easily just send you to an FDA approved facility in the trial? He even should apply to be one of the trial physicians instead of telling the patients to "meet me in Cancun".

I don't question the procedure. But I think with all the recent talk here about questioning before trusting our healthcare providers would truly apply it to a doctor who is actively skirting US law by performing the procedure out of the country. Remember he took an oath which clearly says he will practice within the law. For one you can't sue him if he screws up in Mexico, second you will be paying for it because your US insurance won't be.

Can I ask why you haven't looked into the trial program?

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/20/2009 7:56 PM (GMT -7)   
MJLuke- with kindness meant back to you, but the word "certainty" does not exist in the PCa world anywhere....exceptions appear in everything, you name it, it is not definitive enough or guaranteed. I have mentioned that it is the Twlight Zone of diseases, the scenarios, bizzare treatments, monitoring psa levels etc., the unknowns, the exceptions to the norms, etc. Psa cancer specific=no; biopsies totally reliable=no; scans total definitive=no, treatment types guarantees=no; Partin tables totally accurate=no; drug costs fixed levels=no; outcomes from similar patients with similar treatments the same=no ; same side effects for every patient=no

Now could some patients do well on watchful waiting or monitoring, the answer is yes they could and many have and do so. Is their some risk, of course there is. People whom do or consider such should be in the realm of "indolent or insignificant PCa" levels as defined by John Hopkins-Brady Inst. of Urology, they have some parameters to define this level. Probably person with stats close to this could also do the w.w. (aggressive surveilance is a better $20 word for it). It is written in books and discussed from doctors lips that for some patients it is an option and it is. Less agressive PCa gleason 6 (3+3) and under with low psa (2.0-say) and low percentage found (5%-say) in 1 or 2 biopsies out of 10-14 (say) are the lower risk patients, slow growing PCa. My brother has done atleast 4 yrs. of monitoring and was diagnosed with parameters very close to the Brady Urology specs., it is his call to make and I don't push him into anything, I do tell him the value of monitoring closely. So far no change in psa, never went higher and other variables no changes or unknowns. Alot of choices for patients to make at various stages and levels, this is why abstracts are interesting to read and compare data and usefullness. Of course how can you tell for certain if your biopsies are accurate enough to assess the level of 'indolent' PCa, you actually cannot have 100% certainty, biopsies can miss targets, you could have multiple gleason scores within your gland in various areas ( I had 3 different scores on both sides, too) and so on.

Gee- that was clear and hazy at the same time, such is PCa. Exceptions are the rule if you know what I'm sayin here.
 


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 1/20/2009 9:14 PM (GMT -7)   

Have heard presentation at local Pca support group - sounds interesting.  Here are a couple of threads that are on this forum:

http://www.healingwell.com/community/default.aspx?f=35&m=767343

http://www.healingwell.com/community/default.aspx?f=35&m=706878

 

Best of luck in your research.     Dutch

 


Diagnosed Feb 2001  (Age 65)  Currently 73
PSA 4.8      Gleason 3+3=6      Stage   T2b
Completed Proton Therapy @ Loma Linda - 2001 - No side effects.  My journey is at: http://www.healingwell.com/community/default.aspx?f=35&m=727565
7yr PSA - 0.2
Our responsibility now is to educate men about Pca, PSA and the importance of early detection. 
 
 
 


mjluke
Regular Member


Date Joined Jan 2009
Total Posts : 189
   Posted 1/20/2009 9:49 PM (GMT -7)   
Thanks guys- I think I'm starting to get the picture- my advice to myself at the moment is to " go slow".
 
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.
 
  "There may come a day when the courage of men will fail, but it will not be this day."


Tony Crispino
Veteran Member


Date Joined Dec 2006
Total Posts : 8128
   Posted 1/20/2009 9:52 PM (GMT -7)   
mjluke,
Welcome to HealingWell. There are many primary treatment modalities, including HIFU, that you need to research. Thank you for adding your signature. It tells us more about you. Whatever you choose, make sure you have taken ample time to study this disease and it's treatment modalities to the fullest. You have numbers that say your tumor is moderate in grade and and size. We have people who can talk well on almost all treatment options. Tudpock and gpg are better in the know about HIFU than I probably am. But there is a serious consideration you should add to selecting a treatment and that is the reputation and skill of the person.people you place in control of your treatment. A great surgeon is better than a beginner surgeon, and a great radiology facility is better than a small radiation clinic using an old method. Good luck searching, and stay with us. We all follow each others journeys and can help at the multiple steps in the experience.

Peace,

Tony
Age 46 (44 when Dx)
Pre-op PSA was 19.8
Surgery on Feb 16, 2007 @ The City of Hope
Post-Op Pathology: Gleason 4+3=7, positive margins, Extra Prostatic Extension (EPE)
Bilateral seminal vesicle invasion (SVI); Stage pT3b, N0, Mx
HT began in May, '07 with Lupron and Casodex 50mg (2 Year ADT)
IMRT radiation for 38 Treatments ending August 3, '07
Current PSA (January 13, 2009): <0.1
 
You can visit my Journey at:
 
STAY POSITIVE!
 
 


gpg
Regular Member


Date Joined Jan 2009
Total Posts : 180
   Posted 1/21/2009 7:36 AM (GMT -7)   

Fair enough Tony,  you obviously have talked to a number of people educated on this issue and bring up points which I had not considered.

There are no trials at present or under consideration for which I meet the inclusion criteria.  The Dr. who performed my sat biopsy practices conventional froms of urology including surgery here in the states and does not soley recruit patients for the HIFU proceedure, he does not attempt to conceal the treatment he carries out out of the country and before I allowed him to proceed with the biopsy my family Dr. looked into his background and found nothing of concern.  Also I am insured under a personal major medical plan with United Healthcare/Goldenrule and my policy does cover this procedure done in Mexico.

A very interesting and complicated discussion this.

Scott

TC-LasVegas said...
Scott,
I bet the FDA won't agree that it isn't a question of ethics. And neither would the AMA. I do understand that HIFU is in practice in other countries. I'm not discounting HIFU. I know it works like other ablation therapies. But if a doctor came to the US to recruit patients for his over seas practice he raises real ethics issues. We had a Urologist at our Us Too chapter meeting discuss HIFU as he was gearing up for the clinical trial. The topic of going overseas to do it came up. He said in no way would he ever suggest to a patient ~ as he said "meet me in the Phillipines" because it could and likely would cost him his license here. He called it a violation in Moral Turpitude of a community that does not allow that practice. I believe that HIFU may indeed be legalized here but for now it isn't except in a clinical trial. Why would a doctor circumvent that process here during that trial when he could easily just send you to an FDA approved facility in the trial? He even should apply to be one of the trial physicians instead of telling the patients to "meet me in Cancun".

I don't question the procedure. But I think with all the recent talk here about questioning before trusting our healthcare providers would truly apply it to a doctor who is actively skirting US law by performing the procedure out of the country. Remember he took an oath which clearly says he will practice within the law. For one you can't sue him if he screws up in Mexico, second you will be paying for it because your US insurance won't be.

Can I ask why you haven't looked into the trial program?

Tony


Diagnosed @ 48yo 04/07
focal low volume tumor gleason 6
RRP 07/30/07
Persistance of PSA
IMRT 11/07-01/08
Emerg, cysto obstructed bladder 01/08
Persistance of PSA
08/08 learned Dr. left significant amount of prostate
12/08 saturation biopsy 36 cores 24 having normal prostate tissue
12/08 referred whole to med malprac attorney


Ziggy9
Veteran Member


Date Joined Jul 2008
Total Posts : 981
   Posted 1/21/2009 8:58 AM (GMT -7)   
mjluke said...
Thanks guys- I think I'm starting to get the picture- my advice to myself at the moment is to " go slow".


That's the advice I always give.. take your time for there aren't and do overs afterward. I went from leaning toward surgery to brachytherapy to finally a TFT clincal study. Mine too was discovered by DRE. Your PCa seems similar to mine.
Diagnosed 11/08/07 - Age: 58 - 3 of 12 @5%
Psa: 2.3 - 3+3=6 - Size: 34g -T-2-A
 
2/22/08 - 3D Mapping Saturation Biopsy - 1 of 45 @2% - Psa:2.1 - 3+3=6 - 28g after taking Avodart - Catheter for 1 day -Good Candidate for TFT(Targeted Focal Therapy) Cryosurgery(Ice Balls) - Clinical Research Study
 
4/22/08
TFT performed at University of Colorado
Medical Center - Catheter for 4 days - Slight soreness for 2 weeks but afterward life returns as normal
 
7/30/08 - Psa: .32
11/10/08 - Psa.62 - Not unexpected bounce after the 80% drop the quarter earlier. Along with urine flow readings, an acceptable amount left in bladder measured by sonic. Results warrant skipping third quarter tests, and to return April, 2009 for final biopsy scheduled to
complete clinical research study 
 
 
 

New Topic Post Reply Printable Version
Forum Information
Currently it is Tuesday, February 20, 2018 2:33 PM (GMT -7)
There are a total of 2,931,348 posts in 321,627 threads.
View Active Threads


Who's Online
This forum has 160348 registered members. Please welcome our newest member, ghostcat.
331 Guest(s), 10 Registered Member(s) are currently online.  Details
gooby, Rikky1, Jumpei, Girlie, UnlimitedSpoons, bmike, physics101, sierraDon, cepheus9, Crazyick