Have u guys heard about HIFU ?

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

donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 2/17/2010 11:00 AM (GMT -6)   
Have you guys heard about HIFU?  do you know anyone who has had it done?  Is there anyone here who has posted about it?

Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 2/17/2010 11:24 AM (GMT -6)   
If you go up and type HIFU into the search box, you will see that HIFU is discussed here.
Members Ben, HIFU, Matthew J, JerryB-UK, Gooog, murph, Trog, probably others I've overlooked had HIFU.
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


Galileo
Veteran Member


Date Joined Nov 2008
Total Posts : 697
   Posted 2/17/2010 11:47 AM (GMT -6)   
I forgot to mention cheries:
http://www.healingwell.com/community/default.aspx?f=35&p=1&m=1596628
Galileo

Dx Feb 2006, PSA 9 @age 43
RRP Apr 2006 - Gleason 3+4, T2c, NX MX, pos margins
PSA 5/06 <0.1, 8/06 0.2, 12/06 0.6, 1/07 0.7.
Salvage radiation (IMRT) total dose 70.2 Gy, Jan-Mar 2007@ age 44
PSA 6/07 0.1, 9/07 and thereafter <0.1
http://pcabefore50.blogspot.com


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 2/18/2010 10:44 PM (GMT -6)   
Hi Donna,

I looked into HIFU rather carefully (at least for me) and when my Gleason was 3 + 3 I planned to go to Toronto and have HIFU done by Bill Orovan at his clinic there. The web site is www.hifu.ca Orovan is head of surgery at McMaster University in Hamilton Ontario, one of Canada's leading medical schools, and was trained at M.D. Anderson. I knew two doctors, one who was with him at Anderson, and one who had worked in the O.R. with him here in Canada, and both spoke highly of him. If you decide to call ask to speak to Janice. Janice is a nurse, seemed very knowledgeable, was generous with her time on the phone, I never felt pressured at all, and she is also Bill's wife.

The cost was about $20,000 U.S. and it is an outpatient porcedure. The hotel they book you into is a couple of blocks away from the clinic. You walk over in the morning, and walk back that afternoon. The next day you fly home.

Best I could tell from talking to various doctors and from reading on the internet the short term stats for HIFU were as good as the short term stats for surgery. Long term stats are not available for HIFU. It hasn't been around long enough.

One thing I liked about HIFU was that a treatment didn't rule out any other future treatment, including a second HIFU or a da Vinci prostatectomy. I spoke to a surgeon who had removed a prostate via da Vinci after two HIFU treatments had failed to keep the PSA down.

All is not roses, however. It never is, is it? The treatment, as you'll learn, is not approved by the FDA in the U.S. but is approved in Canada by our equivalent of the FDA. There are possible complications with HIFU, just as there are with any treatment. I'd not want to minimize them at all, but best I could tell issues were likely a little less than with surgery. Comparison is difficult because experience of the doctor is a critical issue, although probably less so with HIFU as it is very computer dependent for generating the proposed treatment plan which is approved by the doctor. I spoke with one doctor, who doesn't do HIFU, but had sat in on several HIFU sessions to learn about it and he said that unlike surgery where the surgeon is working all the time, with HIFU the doctor can be sitting, having coffee, chatting away, while the computer and the HIFU probe do their work.

My HIFU plans were short circuited by a reread of my biopsy slides which said my Gleason was 3 + 4. No reason to think the second read was any more accurate than the first, and the 3 + 4 was everybit as acceptable a Gleason to have treated by HIFU as the 3 + 3 was, but one downside --- at least for me --- is that with HIFU there is no prostate to do pathology on afterwards. A HIFU advocate would say, so? What difference does it make. Once your prostate is out it isn't pathology that matters, it's your PSA. But, I knew if there was a possibility I was a Gleason 7, that I might have some "4" cells, I wouldn't be happy without the pathology afterwards. So, off I went to dance with da Vinci.

I made absolutely the right decision, for me. And I was lucky. My surgery went well, my recovery was not a problem, I'm doing well with a zero PSA after six months, but if I had a second prostate to give to medical science, knowing everything I know about HIFU and surgery now, I might be more inclined to opt for the HIFU. The reason is that now that I have the pathology, and have been reading this group for a much longer period of time, I better understand that my "excellent" pathology is all very nice, but it is what it is, and the only thing that matters is my PSA. The pathology may be a fine leading edge indicator of what may, or may not, happen with my PSA but that's all it is --- an indicator.

But, it's easy to think if I knew then what I know now I might have made a different decision. Fact is a radical prostatectomy is the gold standard for PCa if the PCa is organ contained and the long term stats are available for surgery, and they're not for HIFU and I'm a conservative kind of guy who likes to cover his bets, so in a real life situation I might still opt for surgery.

I tell you all this to acknowledge treatment decisions are not easy ones. I found the worst part of having PCa so far was making the treatment decision. Once that was made I felt a huge weight lifted. I still feel good about my decision and don't regret it for a moment but if I had to do it over again, knowing then what I know now, I'm not sure what I'd do.

Good luck for whatever course of action you decide on. I hope you'll keep posting and let us know where you're at and how things are going.

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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


dogyluver
Regular Member


Date Joined Sep 2009
Total Posts : 35
   Posted 2/18/2010 11:53 PM (GMT -6)   
My husband was diagnosed in July 2009. At first he was thinking about doing HIFU, but research convinced us otherwise. This is cancer we are talking about. nothing so mess with. First off since it is so new, not much is known. And keep in mind that freezing damages the very delicate nerve bundles.
Also be careful, when doing your research stick with major hospitals preferrably teaching hospitals.
Stay with clinics like the Cleveland Clinic, Mayo Clinic, University of California Medical Center, Yoma Linda, and stick to only those. And keep in mind the the numbers are not accurate the only people used in the trials, are men of optimum condition. Under the age of 50, symptomless, non-smoker, non-drinker, perfect weight athletic. They take the best case scenerio, low gleason score and do you want a doctor coming near you with only 3 years out of med school. You want a doctor, old enough to have the skill, knowledge, that only experience can provide. But also a dr young enough to appreciate the concerns of the after effects from the surgery. The age range I'm talking about the mid
40's.
April 09 PSA 3.2
May 09 DRE enlarged prostate
July 09 PSA 5.2
July 09 Biopsy 5 out of 12 malignant
Gleason score: Primary 3, Seconary 4 Total 7
August 24, 2009
Radical Open Prostatectomy Andocarcinoma of the prostate
% of 4 and/or 5: 1-25%
% of 3    76-90%
Androgen deprivation effect: Negative
Apical involvement: Positive
Apical marginal involvement: Negative
Extraprostatic extension (EPE): Negative
Margin: Negative
Bladder Neck Shave: Negative
 
Areas of involvement: Right and Left lateral, posterolateral and posterior and left anterior apex and mid prostate
Principle area of involvement: Right and left lateral, posterolateral and posterior apex and mid prostate
Focality: Multifocal
Volume: Medium(100 Sq mm)
Ejaculatory Duct: Negative
Seminal vesicles involvment (SVI): Negative
Vas deferens N/A
High Grade PIN: Positive
Neuroendocrine differentiation: Negative
 
Pathologic Stage: pT2c NO MX


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 2/19/2010 3:16 PM (GMT -6)   
thanks for all the interest, I've been all over the internet, and I've heard quite a bit so far.  I read your story, Sleepless, several times, thank you for the time you took to write it.  I've been watching his PSA increase for several years, and started  reading here a long time ago, as his brother just had prostate cancer.
 
But, dogyluver,
Hifu isn't freezing, it's cooking the tissue. 
We're going to see a doctor who is recruiting men for the trials next week!  My husband is 64, so the trials aren't men less than 50 like you said, here are the eligibility requirements:


 
Ages Eligible for Study: 40 Years to 75 Years

 

 

Inclusion Criteria:

  1. Gleason score ≤6;

  2. T1c or T2a carcinoma of the prostate;

 

 

  3.  serum prostate specific antigen(PSA) ≤10 ng/ml;

  4.  prostate volume <40 cc;

 

I am very excited about the trial!  I've been faxed pages and pages of info from the hospital.  I feel I am dragging my husband along, he refers to himself as the victim.  But, he won't even talk about any other treatment.


46defense
New Member


Date Joined Feb 2010
Total Posts : 2
   Posted 2/19/2010 3:37 PM (GMT -6)   

Donna the wife:

You are correct about the parameters. I applied for a clinical study Univ. of Wisconsin is conducting vis a vis freezing at there Milwaukee Med Center, but was unacceptable because of volumn size greater than 40cc.

From literature I've read it seems like a very viable alternative and I wouldn't hesitate to participate. Been very effective in Europe and Asia, they say? My brillant urologist I saw yesterday has never even heard of it? If you can connect with a clinical study cost can be affordable and insuance may pay some of prep footwork? I talked to the Canada location and price quoted was 26 G's. The notions that the success rate is very high and HIFU does not preclude future treatments is very appealing. Good luck.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 2/19/2010 4:01 PM (GMT -6)   
I've read the post from dogyluver and as you can see her perception of HIFU reality and mine are quite different. Each PCa person needs to make their own conclusions based on their research. She has hers, I have mine. Each is valid for us, it isn't necessarily for others.

However, there is a factual (at least I believe it to be factual) error in dogyluver's post regrding freezing. HIFU doesn't freeze, it is a heat process, and treats a pinpoint area at a time and the pattern is run (as I understand it) so that heat doesn't build up in an area. Further, the reason, according to the HIFU people, that they have such success with little nerve damage is that the ultrasound picture gives such an accurate view of the nerves. True, or not, I don't know, but from what they can tell with ultrasound about heart valves on a small fetus I don't reject it as impossible.

In general, I think patients need to remember that the credo of doctors is: First do no harm. It is not: First, cure the patient. I think we tend sometimes to forget how conservative most doctors, and the medical system, is. That doesn't mean that we should be swallowing every supplement pushed in TV ads, or rush off for injections of rat urine in some off shore clinic, but it does mean we, as patients, need to keep open minds and seek cures where and when we can. Further, I think we in Canada and North America are a bit smug about thinking we have the best hold on science, and the best in medical care. The story of ulcer cures and stomach cancer prevention being discovered in Australia (for which the two doctors recieved the Nobel prize) years before gastroenterologists in North America --- still performing totally unnecessary surgeries for years --- would listen is salutory. The famous Australian research was 1984. Best I can tell it was 1997 before North American government agencies and doctors had the Ah Ha moment.

I'm not suggesting the Europeans using HIFU have it right, and we have it wrong, only that just because it wasn't invented here, and our doctors know little, or nothing, of a treatment (or worse, think they do when they don't) isn't sufficient reason for a patient not to do their own research. If your reseach convinces you, as it did for dogyluver that HIFU isn't for you, great. If, like myself, you find it to be based on some pretty good science, then that's fine too. All I encourage is each person to listen with an open mind to the good and not so good of any treatment, the experience of others, and make your own assessment.

Sheldon AKA Sleepless

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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 2/19/2010 7:34 PM (GMT -6)   
The clinical trial is FREE!  That doesn't matter as much as getting him free of cancer, and free of possible side effects though. 
 
Yes, I remember that story about the ulcers, not as good as you,  I had no idea we were doing surgery for ulcers,  totally depressing that we don't listen to doctors around the world, the world is flat, you know.
 
My husband worked at our local hospital for a while, and remembers that doctors and surgeons had a quota for working there, not enough surgeries and the hospital would bring in another doctor.  His trust level is low.  I am crushed that our doctor told him surgery is the only option.  I just can't find any harm in doing ultrasound, certainly not over surgery.
 

JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 2/20/2010 7:10 AM (GMT -6)   

Hi donnathewife

I had HIFU in the UK at the end of October and my first PSA result, received a couple of days ago, was 0.4. Bearing in mind that I had focal treatment (i.e. I have prostate tissue still remaining), this result is encouraging, although there is obviously still a long way to go.

If you are interested you can read about my experience with HIFU - and that of others - at http://www.yananow.net/Experiences.html#hifu

I certainly would not wish to portray HIFU as necessarily being superior to any other form of treatment for prostate cancer. Everyone has to make a personal decision on the type of treatment they feel may be best for them. However, I am slightly concerned that Dogyluver seems happy to comment rather negatively about HIFU, both in this thread, and in another one recently at HealingWell, based on an apparent lack of knowledge about the procedure.

Her research appears to have been rather limited, as she is plainly confusing cryotherapy with HIFU. Cryotherapy freezes tissue; HIFU heats tissue. Secondly, although HIFU is still the new kid on the block compared with some other treatments, it does not fall into the category of 'so new' and 'not much is known'. It's been around for 10 years or more although it's fair to say that it only started to become more widely used perhaps six years or so ago. There have probably been in excess of 20,000 procedures carried out around the world, and a significant amount of experience and data have been accumulated. However, Dogyluver makes some good points in general about choosing to have treatment with doctors who have gained considerable expertise in whichever type of treatment you select.

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 (Prostap) for 3 months to shrink prostate with a view to brachytherapy
September 2009 - prostate reduced in size but flow still to slow to allow brachytherapy.  Told that surgery is only option
30th October 2009 - Focal HIFU with Mark Emberton in London UK


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 2/20/2010 11:54 AM (GMT -6)   
I'm receiving so much help!  I love you guys!
 
Do you know why a PSA of 0.4 is considered real good for after HIFU, but it would mean more cancer after surgery?
 
 
 
Husband got real mad upon hearing about how surgeons still were cutting people up, for 13 years, after hearing that a antibiotic would cure ulcers, people die from surgery!  No one even tried what the Aussie's were doing?!  That's horrible.
 
 

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 2/20/2010 3:04 PM (GMT -6)   
The best answer I can give is there is still a prostate gland-in some form- left after HIFU, which will still have residual amounts of PSA in it, whereas, usually the surgery removes all that, plus surrounding areas that contain the same psa.
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
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 2/21/2010 5:03 AM (GMT -6)   

Hi donnathewife

James C makes a good point. Descriptions of the way that HIFU works can sometimes be a little confusing, such as 'ablates the entire gland' or 'treats the entire gland'. It is only the contents of the prostate that are treated with HIFU and therefore there is prostate tissue (the capsule) remaining afterwards to produce a PSA reading of higher than zero.

Additionally, although HIFU surgeons will attempt to ablate tissue as tightly as possible up to the inner walls of the prostate capsule there is a limit to how accurately this can be done, particularly bearing in mind that they have to be especially careful in certain areas such as the wall adjacent to the rectum, near to the bladder sphincter, etc. There are also parts of the prostate which are quite difficult to reach with focused ultrasound: I believe that the apex of the prostate is one such area. For these reasons there will always be some tissue remaining within the prostate to produce a PSA reading of greater than zero.

Although I am very pleased with my 0.4 PSA result, I am bearing in mind that I had hormone treatment for three months finishing at the end of September 2009. It is quite likely that the residual effects of hormone treatment are still having a dampening effect on my PSA result, although I cannot be sure of the extent. I was told that a PSA reading of less than 2.0 (about 25% of my PSA reading before treatment) would be considered satisfactory, allowing for the fact that I had focal therapy. Taking the hormone treatment factor into account I shall not be unduly concerned if I see a rise in my next PSA reading.

Taking the good points that Sleepless made above, HIFU focuses ultrasound in a way similar to using a magnifying glass to focus the sun's rays, to produce a small area (I believe it is about the size of a grain of rice) where the temperature is briefly raised to between 80-100°C. At temperatures greater than 60°C instantaneous coagulative necrosis (irreversible cell death) occurs, so the duration of each 'burst' of HIFU is short. Treatment is a step-by step procedure: visualise the area to be treated using normal ultrasound, hit it briefly with high intensity focused ultrasound, visualise the adjacent area, hit it again with HIFU, and so on. It's a sort of step-and-repeat procedure carried out throughout the area of tissue requiring treatment. Treatment can take up to about four hours.

In another post Sleepless mentions that HIFU is a computer dependent, which is absolutely correct in that computer-based visualisation of the prostate is essential during the HIFU process. There is a key difference between the way that the two primary forms of equipment operate - Ablatherm and Sonablate. With Ablatherm, the step-by step treatment is pre-programmed into the computer once the doctors have decided precisely which areas of prostate tissue need to be treated. The computer then controls the treatment which is of course constantly monitored. With Sonablate the step-by step treatment is carried out 'manually', in that the surgeon is using the computer to control the positioning of the ultrasound beam along each step of the way. No doubt both manufacturers claim advantages for their method of operation, and obviously surgeons performing HIFU have also decided which method they prefer. My personal feeling is that probably the experience of the surgeon is more important than the possible benefits of one system over the other.

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 (Prostap) for 3 months to shrink prostate with a view to brachytherapy
September 2009 - prostate reduced in size but flow still to slow to allow brachytherapy.  Told that surgery is only option
30th October 2009 - Focal HIFU with Mark Emberton in London UK


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 3/1/2010 1:04 PM (GMT -6)   
We were disqualified for the clinical trials  last week, m hubby's gland size was over the limit by only 2cc.  The doctor spent a good amount of time telling us about hifu, the trials and the results he has seen to date, which he said were very good.  He recommended we wait a year and come back, as the cancer shouldn't grow much, and he was diagnosed early.
 
I couldn't stand the thought of waiting, I want to get it out of him.  Nothing like being cut off at the knees.  Then we told our families about our ordeal and they said they would pitch in to help pay for it, we are so blessed to have them.  I sent in Bob's paperwork and we were just approved for hifu in Mexico, we are so happy!  I've cancelled our cell phones, home internet, I'm going to cut his hair and my own, from now on, YES!  there are ways to save money!
 
I figure that we either pay now or pay later, I'd rather pay now.
 
Wish us luck!

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/1/2010 1:18 PM (GMT -6)   
Donna, did the doc discuss the possibility of whether he could be eligible after a short round of hormone replacement therapy or other methods to reduce the size and still get into the clinical trial? If size is the only thing that disqualifies, then a little HT or maybe even some of the frequency drugs could probably reduce the size enough to get into it. maybe 3 months of something like that would work for him.
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
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


JerryB-UK
Regular Member


Date Joined Jul 2009
Total Posts : 39
   Posted 3/2/2010 3:57 AM (GMT -6)   

My prostate size was reduced from 52cc to 28cc by 3 months of hormone treatment, when I was thinking of having brachytherapy.  BUT, I think it is likely that the conditions of eligibility for the clinical trials may preclude a person who has been on hormone treatment within 6 months prior to the trial. That was certainly the case in my situation, where I could have gone into a HIFU trial here in the UK if I hadn't been on hormone treatment. It's frustrating but I can understand that relatively recent hormone treatment could possibly skew the trial results.

Anyway Donna, great to hear that you and Bob have decided to go for HIFU in Mexico.

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 (Prostap) for 3 months to shrink prostate with a view to brachytherapy
September 2009 - prostate reduced in size but flow still to slow to allow brachytherapy.  Told that surgery is only option
30th October 2009 - Focal HIFU with Mark Emberton in London UK


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 3/3/2010 12:37 PM (GMT -6)   
James,
 
 Thanks for the suggestion, although it went over like a lead balloon.  No, you cannot have hormone shots or any drug to reduce the gland size prior to HIFU trials, ever.  In the  Canadian trial you can~they will give you a drug to reduce it.  Canada is too far for us to travel.  Our doctor said we could wait a couple months and be measured again, but, the trial has been closed as of yesterday, they said they are a small company and connot fund two trials, so they are focusing on the radiation trial.  They hope to start up again, but couldn't tell us when.
 
Thought I'd pass along the Canadian trial for others, although it may be closed as well ):
 
http://clinicaltrials.gov/ct2/show/NCT00573586 canadian clinical trials: Prostate total volume less than 40cc with an AP height less than or equal to 4.2cm. (If volume is greater than 40cc or height greater than 4.2 cm, one 3 monthly shot of an LHRH analogue may be provided, followed by re-imaging of the prostate to document total volume below 40cc.)
 
And, I found a page that answers questions regarding hifu:
 
 
  It's back to square one for us. 

James C.
Veteran Member


Date Joined Aug 2007
Total Posts : 4462
   Posted 3/3/2010 1:43 PM (GMT -6)   
donna, sorry things sorta came discombulated for you two. However, thanks for the good info. We seldom have access to info dealing with the procedure that isn't tinged by spamming for the same. You sources are helpful in making us aware of the details of a future treatment options.
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
32 mts: PSA's: .04 each test since surgery, ED Continues-Bimix .3ml PRN or Trimix .15ml PRN


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 3/3/2010 1:46 PM (GMT -6)   
Hi Donna,

Sorry about square one.

Can you create a signature with the basic information about your husband's PCa? The more information you can give us there, age, PSA, biopsy stats, other health issues, etc. the more targeted advice and help can be.

I'll check back here later ....

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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 3/3/2010 1:53 PM (GMT -6)   
Donna
 
I'm glad that you are finding a solution but I would like to point out that many men have either Da Vinci or open surgery and other PC treatments who will recover completely without any after effects. I have male friends/co-workers  that had either surgery treatment, they went through short ED and Incontinence periods (weeks not months) and now are 100% back to normal.
 
The web sites tend to have either men with issues they are trying to have resolved or others that like to share info and help. When you compare the thousands of Prostate Cancer surgeries performed each month to the number of people on the web sites, there are fewer than 5% that post. My surgeon alone did 10 a week, his group performed a 100 a week both Da Vinci and open. There are five Urology groups where I live who were all extremely busy. Which is one reason why I never see HIFU becoming as mainstream as the other treatments.
 
Good luck 
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.


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 3/4/2010 12:03 PM (GMT -6)   
Jerry,
I was wondering why you said you "still have a long ways to go"?  You've been treated with hifu and your psa is very good, do you just mean you still have to watch it?  There isn't anything else to do, is there?
 
Bob's PSA is 5.7
Gleason is 3+3=6
3 cores of 12 had cancer, 2 were 5%, 1 was 10%
DRE was said to feel a bit enlarged but soft
 
Maybe our best choice is to wait and watch?   he's so sick of getting his blood drawn, I guess you all know about that though!
 
hb,
If hifu proves no pain no side effects for 99% surely men would change to hifu once they know.   I understand the older you are the more likely you'll have incontinence and ED with surgery, he's 64.   He won't come on a forum, no ways, but he does ask me what I learned today.
 
Thanks again

Post Edited (donnathewife) : 3/4/2010 11:14:22 AM (GMT-7)


John T
Veteran Member


Date Joined Nov 2008
Total Posts : 4227
   Posted 3/4/2010 12:17 PM (GMT -6)   

Donna,

Given your husband's stats, a low gleason and low psa, just about any local treatment will work well with the same cure rate. The cure rate for all local treatments with these stats is about 95% and the overall death rate is about 2%-3%.

Did you look at any of the other local treatment options? HIFU is about $25,000 and you have to travel. Surgery is about $25,000 to $50,000. External radiation is about $40,000 and Brachytherapy is about $10-$15,000. All will work well in his situation, so I don't know why you are fixated on HIFU, especially if you don't have the money.

The side affects from Brachy are similar to HIFU except the short term side affects are much less, no catheter, no hospital stay. In any event any treatment you choose will work well and the doctor performing the procedure will have a greater affect than the treatment you choose.

JohnT

 


64 years old.

PSA rising for 10 years to 40, free psa 10-15. Had 5 urologists, 12 biopsies and MRIS all neg. Doctors DXed BPH and continue to get biopsies yearly. 13th biopsy positive in 10-08, 2 cores of 25, G6 less than 5%. Scheduled for surgery as recommended by Urological Oncologist.

2nd Opinion from Dr Sholtz, a Prostate Oncologist, said DX wrong, pathology shows indolant cancer, but psa history indicates large cancer or metastasis. Futher tests and Color Doppler confirmed large transition zone tumor that 13 biopsies and MRIS missed. G7, 4+3, approx 16mmX18mm.

Combidex MRI in Holland eliminated lymphnode mets. Casodex and Proscar reduced psa to 0.6 and prostate from 60mm to 32mm. Changed diet, no meat and dairy. All staging tests indicate that tumor is local and non agressive. (PAP, PCA3, MRIS, Color Doppler, Combidex, tumor reaction to diet and Casodex, and tumor location in transition zone). Surgery a poor option because tumor is located next to the urethea and positive margin is very likely; permanent incontenance is also high probability with surgery.

Seed implants on 5-19-09, 3 hours door to door, no pain, minor side affects are frequency and urgency; very controlable with Flowmax and lasted 4 weeks. Daily activities resumed day after implants with no restrictions. Gold markers implanted with seeds to guide IMRT.

25 treatments of IMRT 6 weeks after seed implants. No side affects at all.

PSA at end of treatment 0.02 mostly the result of Casodex. When I stop Casodex next week expect PSA to rise. Next PSA in November. Treatments and side affects have greatly exceeded my expectations. Glad to have this 11 year journey finally conclude.

JohnT


hb2006
Regular Member


Date Joined Nov 2008
Total Posts : 299
   Posted 3/4/2010 12:39 PM (GMT -6)   

Donna

I just don't see it changing any time soon. And when you learn about the adverse effects that you can have from HIFU, it's still experimental. Which explains all the clinical trials.

Then factor in the men who are excluded; PSA greater then 7, Ulcer patients, Colitis or IBD patients, etc. It reduces the number of men that are candidates.

I don't have an issue with HIFU, I'm just being a realist since I work for a large Health Plan and I don't see HIFU being covered for years and years. Medicare/Medicaid will take even longer.

And in the end, the cancer can still be there and resurrect itself. None of the existing treatments can guarantee (including HIFU) that the PSA won't rise again in the future. It can lurk for years and show up later.

 

 


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.


Sleepless09
Veteran Member


Date Joined Jul 2009
Total Posts : 1267
   Posted 3/4/2010 12:40 PM (GMT -6)   
Donna, JohnT is right: With Bob's stats just about any 'cure' will work as well as another and doctors will be falling all over themselves to work on him --- he'll make their stats look good!

However, when I say "Bob's stats" I am referring to the pathology report you posted. Pathology is a bit art, and a bit science. I understand there are clear cut calls, but some that are borderline. My first pathology read said 3 + 3. At the urging of a John Hopkins trained urologist, oncologist, da Vinci surgeon, I had my slides reread. Both pathologists were considered to be at the top of the game. The second one said 3 + 4. Doesn't mean he was any more right than the first, but the possiblity I might have "4" cells changed my thinking on treatment.

First thing you need to do is get Bob's slides reread. If the second read agrees with the first Bob's got lots of great options. If the second read suggests some of his cells might be "4" then he's still got lots of great options, but more need to make a choice and get going.

Before you worry too much about HIFU, or seeds, or da Vinci, you really need to have confidence that you know what you're dealing with. It is not unusual for a Gleason score to be reported differently after surgery ---- usually higher ---- and so, with respect, I urge you to get a second read.

Once that's in you can make decisions with more information and more certainty.

By the way, when my "final" pathology was done, looking at the whole prostate, as you can see below that pathologist, a third pathologist, agreed I was a 3 + 4 = Gleason 7.

I know it's easy for me to say, and not easy for you to do, but you've got time here, lots of time if he's really 3 + 3, so don't feel a need to rush to a decision --- but I do encourage you to move now on getting a second read on those slides, and by someone who reads lots of prostate tissue and has a reputation for making good calls.

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
From "knock out" to wake up in recovery less than two hours.  Actual surgery 70 minutes
Flew home to Winnipeg on July 3 after 5 nights in Ramada Inn  ---  perfect recovery spot!
Catheter out July 9
Final pathology is 3 + 4 Gleason 7, clear margins, clear nodes, T2C, sugeron says report is "excellent"
First post op PSA Sept 09  less than 0.02
PSA on Oct 23 test again less than 0.02
PSA on Jan 8 less than 0.02  
Oct 1st 09 -- dry at night, during day some stress issues.
Oct 31st padless 24/7 
Feel free to email me at:  sheldonprostate@yahoo.com    


donnathewife
Regular Member


Date Joined Oct 2009
Total Posts : 27
   Posted 3/5/2010 2:48 PM (GMT -6)   
The slides were reread, once by our local hospital, and then again when we went in for the trials.  They agreed.
 
I forgot to say that Bob's Free PSA was 11%, does that make any difference to anyone? 
 
Actually we do have the money, just hate to spend it, that's why I want to replenish it as quick as we can.  Last night Bob came home with a 6 pac of supermarket beer, so he's doing his part!
 
Sheldon, maybe you were one of the aggressive cancer patients, maybe it wasn't that it was misread, but that your reading went up so fast?  You post a successful story ending, good.!
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, June 21, 2018 6:14 PM (GMT -6)
There are a total of 2,974,287 posts in 326,165 threads.
View Active Threads


Who's Online
This forum has 161236 registered members. Please welcome our newest member, Althea F. Phillips.
383 Guest(s), 10 Registered Member(s) are currently online.  Details
SantaZia, JayMot, mattamx, Donjr, Sr Sailor, The Dude Abides, Tudpock18, FLBeachgal, elvin, straydog