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Posted 1/11/2010 3:42 PM (GMT 0)
Purgatory, I hope that you are out of purgatory, as it must have been, did you ever punch your doctor in the nose? think I would have, as I would have needed something to punch, 4 c diagnosis, more than anyone should have to tolerate.

thank you, hb, & you'll like my hifu urologist then, as he is conducting FDA trials in NYC, he flies out of the country every weekend to treat all those who cannot qualify (or chose not to), he told me he must change flights twice en route, and going thorugh security is such a pain, I couldn't have ever given so much of myself to a cause, I respect him wholely for being such a trooper.

The use of the word "lure" is offensive, as that is not the case, we chose, all the facts are up front, and I see no one complaining afterwards. And, some men may get far more excited than you like, but it's excitment & sharing info, not advertising.

Thanks again for the chat.
Posted 1/11/2010 3:51 PM (GMT 0)
cheries, i am not really a blame person, more of a solution problem. no desire to punch out my doctor, or any of those helping me work through this maze of problems and setbacks. there has to be answers and solutions to all of this, and its more a question of patience and endurance trying work through it. my real hope is that one day, this will all be behind me. if i didnt believe that, i would have no hope.

david in sc
Posted 1/11/2010 11:12 PM (GMT 0)
Cheries

I have stayed out of this discussion, because I have no desire to debate one choice over another. I respect every man's choice as his choice.

I was a little curious though in your posts you mentioned peeing more, and not getting up at night. What does this have to do with the price of eggs ? Surgery or radiation has little effect on this. Yes, for a time afterwards men may make more frequent trips to the toilet so they don't leak, but overall, the amount of pee is determined by your kidneys and bladder. I don't get up at night either and pee like a race horse.

Just a curiosity.

Goodlife
Posted 1/12/2010 12:25 PM (GMT 0)

Cheries...

You stated---

"I've never heard of any fellas who had a positive biopsy after hifu treatment, by the way how do they biopsy something that isn't there?"

As mentioned by someone else, HIFU is an "ablation" treatment. It kills cells but as dead as it may be, the prostate gland is still there. As such, positive biopsies following HIFU are still evidenced, particularly on those who have larger cancers. That's just a fact, albeit I am hopeful that the treatment will get better with each sucsessive generation.

I agree with Tony on this:

"I understand however that for many men, doing nothing is not a good decision for them. It causes worry and lowers quality of life for those that live in anxiety over this disease. Perhaps this will prove to be the class of patient that is best suited for HIFU. "

Clearly those with lower-grade PCa may be much better off selecting HIFU than Watchful Waiting. The benefits clearly outweigh the cons. However, the greatest con is the out of pocket cost and inconvenience of going to Mexico. What happens if there are complications?


 

Posted 1/16/2010 2:14 AM (GMT 0)

JoeyG,

While I do not have a medical degree, I believe that total ablation of the prostate gland means the gland is not there, it has been destroyed.  I pissed out ash for many days, and the fact that I pee like a youngster again & I can hold my pee for long periods means to me that the gland is not there thus obstructing the flow.

This is a very good read: http://en.wikipedia.org/wiki/HIFU

You asked, "what happens if there are complications?"  My urologist was supportative of my travel to Mexico for HIFU and he was very happy to help, he even phoned my HIFU doc in NYC.  I was told that International HIFU has lists of supportative doctors throughout the world.


Posted 1/16/2010 12:18 PM (GMT 0)

Hi Cheries,

As far as I'm aware total ablation of the prostate gland using HIFU means that the contents of the gland have been ablated. This does not include the capsule. If the entire gland was ablated what would there be to link the urethra with the bladder?

On the subject of urine flow and nocturia discussed earlier in this thread I believe this a factor in several forms of treatment, if not all. For example, after brachytherapy, flow can be a problem for some time, particularly if the patient experienced a degree of BPH beforehand. One of the encouraging things I am finding after my focal HIFU treatment 2.5 months ago is that my flow rate, and the number of times I have to get up in the night, are now better than they were beforehand and still improving. I understand that improvements can be expected for up to 6 months after treatment.

Jeremy

Posted 1/16/2010 2:51 PM (GMT 0)

JerryB-UK,

Glad someone who also has had HIFU has joined me!  And you sound like you are glad you chose HIFU.

I believe that the doctor can choose what tissue to ablate, and so some of the gland can be treated, leaving other areas, so the capsule can be left unharmed, but I believe the entire capsule can be ablated, and turn to ash and leave the body, I found this that I believe backs up my thinking in the wikipedia page that I posted above: 

 "This technology can achieve precise ablation of diseased tissue, therefore it is called HIFU surgery. Because it destroys the diseased tissue non-invasively, it is also known as "Non-invasive HIFU surgery". Anesthesia is not required, but should be recommended."  and again: "HIFU may also be used to ablate the entire prostate gland using a transrectal probe."

Now I am thinking that the PSA score may tell us how much was ablated.  Mine is 0.2, so maybe a bit near the nerves was left.  I see you had your treatment not quite 3 months ago, please do post your score.

Interesting your thoughts on BPH, no one diagnosed me with it, but it did take a while to start the flow, and a while to finish before HIFU, however I had no issues after HIFU except ED for several months, not total ED, just not able without Cialis.

Posted 1/16/2010 5:00 PM (GMT 0)
Cherries,
What was you Gleason score, how many cores positive and what was your psa before treatment?
JT
Posted 1/16/2010 5:36 PM (GMT 0)
The "ash" you are talking about would not come out your penis. The prostate is wrapped around the urethra, but no urine goes in the prostate. The prostate is still in tact, you have killed the contents inside.

Goodlife
Posted 1/16/2010 8:53 PM (GMT 0)

Hi Goodlife,

I'm inclined to agree with your implication that the word 'ash' is perhaps not quite appropriate. The ablated tissue has not been heated to the point of incineration (the focal temperature is only between 80-100°C) and its appearance in the earlier stages is that of bloody tissue. Later on the tissue becomes lighter in colour. Personally, I prefer the word 'debris'.

However, whatever you want to call it, it certainly does come out of your penis. I speak from personal experience! In normal operation the prostate produces prostatic fluid to form part of the seminal fluid within the urethra on its way to ejaculation. In a similar way, when the contents of the prostate have been ablated, debris will find its way into the urethra and out from the penis.

Further to Cheries comment I'm still extremely doubtful that HIFU would be used to remove the entire prostate gland. To do that one would need to be able to ablate all of the prostate tissue but leave the urethra undamaged. If it is possible to do this with HIFU I imagine that it might be possible to do it with surgery and, if that were the case, there would be no need for the standard surgical procedure which necessitates reconnection of the severed urethra from below the prostate with the severed urethra at the bladder neck.

Jeremy

Posted 1/17/2010 6:05 AM (GMT 0)
hello folks!

1) Isn't HIFU so precise that it destroys all cancer cell in the prostate? How do the docs determine exactly where those cells are?
2) is there a chance that after HIFU, some cancer cells that remain in the capsule get out and spread the cancer?
3) Does Dr Scionti use MRI-S to check for the cancer before the HIFU?

Sorry for all the questions.. but I was investigating this procedure and came across a Dr in florida, Wheeler, that does HIFU and offers the MRI S as a better alternative to biopsy.. makes a lot of sense.. his website is www.mriusa.com can anyone validate this information. I am investigating for my father.. who took an interest in HIFU vs Davinci..
I will get my old man the best he can get.. :)
Posted 1/17/2010 8:39 AM (GMT 0)

Hi HelpingmyDAD

It's important to separate diagnosis from treatment. Diagnosis of the extent and aggressiveness of PCa is pretty much the same regardless of the treatment subsequently.

HIFU is certainly not so precise that it definitely destroys all cancer cells in the prostate. Doctors will do their best by means of imaging and needle biopsy to ascertain where the main tumours are in the prostate, but the prostate is quite a complex organ and there is no 100% guarantee that HIFU will be able to remove all tumours. If you're looking for 100% certainty, surgery is probably the best option although of course even surgery will not guarantee that there may not have been escape from the prostate.

So, after HIFU there is always a possibility that cancer cells may remain in the capsule, as with other forms of treatment, aside from surgery. Doctors will try to check on this by carrying out PSA testing, and perhaps further imaging and biopsy. If there is cancer remaining after HIFU, further options may include HIFU treatment again, brachytherapy, EBRT and surgery.

You will need to ask Dr Scionti what methods he uses to check for cancer before HIFU. Personally, I would be a little wary of anyone offering MRI-S as an alternative to biopsy. As well as identifying the location of cancer it is important to know how aggressive it is, and I'm doubtful that any form of MRI scan is able to identify this as accurately as a biopsy. My personal option was to go for a template guided biopsy which involves taking multiple cores over a pre-determined grid. This gives a much better likelihood of identifying the location and aggressiveness of cancer compared with the standard 10-12 core biopsy.

Until you have full information about the cancer it is a little difficult to make a decision about which is the best form of treatment.

Good luck with your investigations.

Jeremy

Posted 1/17/2010 2:54 PM (GMT 0)
Sorry I used the words "pee out the ash", as it didn't go through my penis, it was in the catheter bag, thus in my pee, and it was ash colored small pieces, along with tiny bits of blood.

HIFU is so precise it can destroy all the tissue in the gland, and the gland itself, but if you chose partial ablation then yes, if cancer is left in the gland then it could escape the gland.

Helpingmydad, someone needs to phone Dr. Scionti and ask him these questions as all of us just do our best to guess for answers, he has been involved for many years and actually knows the answers.

As the wikipedia site says, it's called HIFU SURGERY because ALL of the gland can be ablated. Thus the reason JerryUK says his pee has ash in it.

My June 2009 PSA was 8.5 4 cores positive, Gleason 3+3=6 PSA now 0.2 (I'll attempt a signature)

I faxed in my biopsy report and PSA and was accepted, my HIFU doctor didn't do any pre tests, he just had my ultrasound photos and results of the slides.

I've heard of Dr. Wheeler, and from what I hear the MRI-S is a new test and it does work. It isn't approved (here we go again) for conclusive results, but I'm betting the farm it does work.



____________________________________

My June 2009 PSA was 8.6
4 cores positive
Gleason 3+3=6
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta (wife is begging me to go back for real vacation)
HIFU treatment July
PSA now 0.2 (which is excellent, as long as it stays there, in my opinion the fact it has gone down since first reading at three months is a great sign)
Posted 1/17/2010 3:48 PM (GMT 0)

I wouldn't get too carried away with MRI-S...it's an improvement, albeit a baby-step improvement in a limited scope of purpose.

The purpose of MRI-S in PC diagnosis is to aid in the determination of tumor location, extent and potential spread.  Tumor location is important for some of the targetted treatments.  Extent and potential spread is important in initial selection of treatment mode. 

Some of what people have written about it seem to make MRI-S sound like a "miracle tool."  It's not, and those comments make me think that the writers haven't really read much about it other than some eye-catching press releases (often made to look like scientific articles).


Post Edited (Casey59) : 1/17/2010 9:35:56 AM (GMT-7)

Posted 2/12/2010 10:00 PM (GMT 0)

First off, I know purgatory is reading this, and I want to tell him how sorry I am to read about all his troubles, may they end very soon, glad to read the pain is less.

 

My son had his PSA tested, it was his first time (that he knows of), he is 40, it was 2.3  That's good, right?

 

He tells me that our urologist flew down to Puerto Vallarta and learned the HIFU technique.  He was quite impressed with what he saw.  He's been learning about HIFU at various urology conventions around the country and was anxious to learn more, especially after two of his patients had successful encounters.  He's a young fella so he will live to see it practiced here.

 

From my perspective HIFU is going to be the number one choice when more men learn about it and it's available here.  And I thank God each and every day.

 

 

________________________________

 

My June 2009 PSA was 8.6
4 cores positive
Gleason 3+3=6
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta (wife is begging me to go back for real vacation)
HIFU treatment July
PSA now 0.2 (which is excellent, as long as it stays there, in my opinion the fact it has gone down since first reading at three months is a great sign)

    

            


        


    








    

    


        


            

        


        


            
Posted 2/12/2010 11:01 PM (GMT 0)


            


            


                thank you cheries, for thinking of me, getting a partial break on the pain front, mostly from going from two catheters back to the one, anything is an improvement.

glad to hear your son had his first psa, now he will have an early baseline.  not sure if that number is good or not, not familiar with what would be considered aged factored for a 40 year old man.

you may be proven right about the HIFU in the future here in the US.  At least it will be another  treatment option when approved.

hope you are doing well too.

david in sc    

            


        


    








    

    


        


            

        


        


            
Posted 3/1/2010 7:06 PM (GMT 0)


            


            


                

Thank you Cherries for your story, we've read it several times, and even printed it off.


 


We are taking your route and will let you know how it goes!


 


Many many thanks for your time in writing your story.
    

            


        


    








    

    


        


            

        


        


            
Posted 3/2/2010 3:59 PM (GMT 0)


            


            


                Cheries



I don't ever see HIFU as the number one option in my lifetime. Just too many differences in opinion and established medical care. 



It's great that it worked for you but too many men delay getting physicals or their PSA checked and then they are at a PSA of 7 or higher. 



I'm totally happy with my approach and wouldn't consider HIFU if I had the choice. I love the injections and what they do to a guy. Wouldn't give that up now for anything.     

            


        


    








    

    


        


            

        


        


            
Posted 5/25/2010 9:27 PM (GMT 0)


            


            


                 

My 9 month PSA is the same as before, 0.2 and my friend who also had HIFU 2 years ago now, says he is still cancer free.


Dear Donna,


I hate to be the bloak that talks anyone into anything, so I hope your husband and you made the best decision for you both, as wives are just as affected as we are by this disease.


My best to all of you who read this, I hope that you all look into HIFU.


goodlife,  I found out that you were right, we still have our gland after HIFU treatment.


hb2006,  You "love the injections"?  ??? 



________________________________


 


My June 2009 PSA was 8.6 
4 cores positive 
Gleason 3+3=6 
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta (wife is begging me to go back for real vacation)
HIFU treatment July
PSA at 6 months 0.2 (which is excellent, as long as it stays there, in my opinion the fact it has gone down since first reading at three months is a great sign)


9 month PSA was 0.2
    

            


        


    








    

    


        


            

        


        


            
Posted 5/25/2010 10:53 PM (GMT 0)


            


            


                
Cheries


PSA of 0.2 seems high. Are you sure that you didn't mean 0.02? Some Urologists will start Radiation Treaments at anything higher than 0.1. Mine has gone from 0.02 to 0.03 and hasn't caused any worry. My urologist told me to not see him again for 9 months. 


The injections are kind of like the penile implants, until you have used Trimix or Caverject, you don't know what it's like to be hard for hours. And have your partner urging you to do it as often as possible.


I have no regrets but will probably get an implant next year since my insurance covers it. More of a convenience issue than anything else. 



    

            


        


    








    

    


        


            

        


        


            
Posted 5/26/2010 3:47 PM (GMT 0)


            


            


                JJeremy. for what its worth department, I also considered HIFU however the clinical trials at Univ of NC/Chapel Hill would not accept anything over a Gleason 6.  I do not know if all the clinical trials are that restrictive but with that criteria it could be interpreted they are trying to assure they get the best results possible by admitting the possibly less-risky cases-IMHO.    

            


        


    








    

    


        


            

        


        


            
Posted 5/26/2010 5:52 PM (GMT 0)


            


            


                hb,
As I just learned, I still have the gland itself, the contents are gone, as is, I will always have a PSA reading, and 0.2 is as good as it gets.  Rarely the PSA is lower after HIFU treatment, quite often it's higher, my friend here has a PSA of 0.4, as long as it doesn't spike up he is cancer free.  That's one way HIFU and all the other treatments are similiar, we all have uncertainty to deal with.

I do know what it is like to be hard for hours, and I didn't like it one bit, and my wife didn't either, I sat eatting waffles while it was hard, took 4 hours to go away, courtesy of Viagra.  You must be a whole lot stronger and younger than I.

I wonder, Chatuge, if the FDA sets those limits, and if by setting those limits, when HIFU is approved they will only be able to treat a Gleason 6 or under, sure will limit what they know HIFU will work on.


________________________________
 
My June 2009 PSA was 8.6 
4 cores positive 
Gleason 3+3=6 
my gland was over the size limit for HIFU clinical trials, so I flew to Puerto Vallarta (wife is begging me to go back for real vacation)
HIFU treatment July
PSA at 6 months 0.2 (which is excellent, as long as it stays there, in my opinion the fact it has gone down since first reading at three months is a great sign)
9 month PSA was 0.2    

            


        


    








    

    


        


            

        


        


            
Posted 5/26/2010 6:54 PM (GMT 0)


            


            


                That's a good question, does the fact that the trials only allow gleason 6 exclude those with a gleason 7, such as myself.  I'm very glad I choose HIFU and I think it certainly should be available as an option for everyone.    

            


        


    








    

    


        


            

        


        


            
Posted 5/27/2010 10:25 PM (GMT 0)


            


            


                Eggbe



The trials also exclude anyone with Intestinal Bowel Disease or Colitis. HIFU would definitely make those it worse for those patients. The thought of a colostomy bag after HIFU would be really hard to bear. 



Cheries, you must be a lot older than I am. You never did post your age.     

            


        


    








    

    


        


            

        


        


            
Posted 5/27/2010 11:53 PM (GMT 0)


            


            


                I read about hifu, but it was not much of an option for my 4+4, and being bound by what the insurance would/ would not cover, it was off the list for financial reasons. Being out of country didn't help, and it sounds like my colon issues would have outed me anyway.

I did have a "promoter" try to convince me to take out a loan to pay for it - that sort of finished it off. 

All treatments deserve consideration.    

            


        


    









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