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Re: hifu mindwarp trivia from planet earth

Hi there.

I assume you have read the stories that men who have had HIFU on the site? If not, I think you might find it useful to read them and, in particular those of Eric Sondeen and T V. TV’s story in particular should be of interest because of his comments on prostate size and the relative operational issues of the two machines. Eric’s story is one that everyone considering HIFU should read because it tells graphically just how difficult the sloughing of bladder material can be to deal with.

From my reading – not at your depth, possibly, and some time ago – I gained the impression that modern usage of HIFU technique was started in China, where the majority of early treatments took place. The technique was then taken up in Germany and in a number of other European countries. As you know, the procedure has not been approved by the FDA in the USA where it is still regarded as ‘experimental’.

It is extremely difficult to find any neutral studies – as you say most of the information is produced by manufacturers or users and must for that reason be regarded with a degree of suspicion. Some of the studies that I read were interesting for what they didn’t say as well as for what they claimed – for example in one glowing study, there was a veiled reference to the poor results that had been corrected by changes in technique and procedures, but nowhere could I find just how bad the results had been or what had been done to correct them.

Does the doctor you have spoken to who claims to have treated 1,500 men work in the US? If so I’d be very surprised at this figure and I’d certainly be asking him to provide some details on when he started, how the trade has built up and what the outcomes have been. If he doesn’t keep this kind of record available for potential customers, I’d be very wary of accepting anything he says.

I know that there would be no advancement if no one put themselves up as ‘guinea pigs’ for new procedures and I am full of admiration for anyone who takes this path, but I think it is very important to realize just how dangerous it can be to take a decision without adequate data.

Good luck – and let us know how you go.

All the best

Terry in Australia

Re: hifu mindwarp trivia from planet earth

Hi holloman
There are some mistakes in your information. The Albatherm is a HIFU system that requires that the prostate size be 40cc (g) or less. The Toronto Maple Leaf HIFU which uses Albatherm has just recently received a new probe that can do prostates that have one dimension of the prostate as long as 38mm. This is the upper limit of that dimension but the other dimensions (length, width or height) could be longer as those other dimensions would only increase the number of planes of treatment and/or the number of shots in each plane. So, they were going to do me at 43.5cc but I was at the upper limit and did not want to risk the chance of having to redo the procedure as one of the dimensions was 38mm.
A shot is a strip of prostate tissue between 1 and 2mm square by several millimeters in length. The length of the shots is different in each of the machines. The Albatherm's shots are almost the entire depth of the plane of treatment which is the entire width, length or height of the prostate depending upon which dimension is 38mm or less for this new probe. From my discussion with the people at Maple Leaf HIFU in Toronto the newer Albatherm probes now divides the prostate into a few blocks. The Sonablate machine can do larger prostates upto 50cc (g). The Sonablate machine has two probes--one has a focus point for longer distance away for the the transducer (sound emitter) and a short distance probe for areas near the transducer. The Sonablate system divides the prostate into three zones, top, middle and lower which is list as anterior (head end) middle and posterior (tail end). Each zone is divided into two blocks, left and right. The Sonablate machine take a shot that is about 1 to 2mm square by 10 to 15mm long. These tiny strips of treated tissue, basically burned by the ultrasound, are slightly overlapped to completely obliterate the prostate tissue along the plane of treatment. Both system can adjust the length of the shot, Albathem between 18 to 24mm and Sonablate which uses smaller shot lengths--10 to 15mm. The Sonablate machince can get into smaller areas as did my doctor for me. My prostate cancer was located near the apex of the gland where the capsule is thinnest and folds so there was a chance if cells were left in this area they could escape. My doctor created a seventh block in very end of the apex consisting of a few shot to insure that no prostate tissue remained.
The Albatherm uses a set intensity of sound so it cannot make any adjustments for differences in prostate sound absorption in different men while the Sonablate can change the intensity of sound for tissue density and abstructions like calcium deposits.
The Sonablate procedure states that incontinuence is 0.6% which is almost non existant. Erectile dysfunction is 20% with nerve sparing procedure and this is probably a lot less as they have patients take Cialis after the suprapubic catheter is removed to improve blood flow the erectile tissue of the penis. The suprapubic catheter is a catheter that is inserted through the body wall into the bladder just above the pubic bone a lot easier to cope with then an urethral catheter (in the penis).
I am aware that the Albatherm treatments frequently will have the patient undergo a TURP to reduce the prostate size and apparently it is supposed to reduce the pain after the treatment and it does work from what I have read. The Albatherm is not capable of taking ultrasound images while the procedure is taking place. They seem to take one and use it for the whole procedure. This I find a little disconcerting as the prostate swells with the first burning process. My doctor told me, and I was awake during my Sonablate procedure, that my prostate swoll about 10% of its volume so the Albatherm doctors must adjust for that or maybe they stop the procedure to take another image. The Sonablate machine takes an image after each shot so the doctor is continually update on any changes in the prostate. The Sonablate does not require any TURPs.
As to the prostate tissue working is way out through the penis, well some tissue is sloughed off but some tissue is absorbed as I am now 5 weeks post procedure (done on March 29, 2008) and I have very little tissue loss, partically none. However, this process of passing necrotic tissue is supposed to continue for about 2 months--not sure of the length of time.
From my point of view even with the problems I have had with Winnipeg Sonablate clinic this is a better way to go. I am totally continent right from square one, (beginning). The only thing that does create a problem is the urgentency to urinate. Like it is now so you need to be able to get to a washroom within a minute or so or you start to flow. You can use the kegel exercise technique for control and it works to prevent the flow from starting. From my point of view the Toronto Sonablate CANAM HIFU is better than Winnipeg. The Toronto clinic has been around for a long time and the Winnipeg clinic just open this February, 2008. The Toronto Sonablate clinic was swamped with work as I understand that is why they opened three new Canadian Sonblate clinics in Winnipeg, Niagara and Montreal.

Here are the addresses and phone numbers of the two types of clinics just for you information.

Albatherm
Maple Leaf HIFU
Ph. 1-877-370-4438
internet http://www.hifu.ca:80/

Sonablate
USHIFU
ph 1-888-874-4384
internet www.ushifu.com

Re: hifu mindwarp trivia from planet earth

Hi TV. I just got interested in HIFU since I was left with 9.4 grams of prostate after a robotic surgery. I don't yet know if I have cancer in my remnant. If I do I will choose either watchful waiting or radiation or HIFU.

The sloughing and passing of debris with HIFU would worry me. I am continent now and for me the thought of a supra-pubic or even Foley again is almost worse than radiation side effects.

Since I had a TURP already, which is when my cancer was found, and I have had the bulk of my prostate removed, do you think blockage would be a risk for me if I took the HIFU road?

I ask you as someone who has had the treatment and who has read widely about it. I have read your story and Fred Gillick's and Eric's and I am not confident. It is difficult to get much info on this since so few have had it. A specialist in HIFU I consulted tells me that he does not see much stricture these days and the treatment would be ideal for me. Well, yeah, but......
Ted from England

Re: Re: hifu mindwarp trivia from planet earth

Hi Ted
Some of the information that I have read indicates the the HIFU treatment had some problems with damaging the rectal walls. This was eliminated when they started to pump cooling water into the condom. The cool water at 17 to 18 degrees C protected the rectal wall and also cooled the probe. Both systems have in place sensors that the least little movement will shut down the machine to prevent any damage to non-targeted tissue. The Albathem people at Maple Leaf in Toronto told me that moving your toes would shut the machine down so that is why they require the patient to also have a sedative to put him to sleep during the process. The Sonablate system also has movement sensor as I was told not to move my hand when I wanted to reposition my arm after couple hours in the OR. Both have sensors that monitor the rectal wall tempature to prevent heat damage to the rectal wall. Turps have been recommended for Albatherm patients to reduce prostate size and it eliminates any pain after the procedure which has been atested to by patients. You should not have any blockage because your urethral opening has been enlarged from the TURP.
As to sloughing and passing necrotic tissue, don't worry about it. The three pieces that I passed into my leg bags very small and not a problem to pass. Some patients have indicated that there is some discomfort when one passes larger pieces but not a big problem. I have not passed anything of any size as yet. The suprapubic catheter is only 3 to 4mm in diameter so that gives you some idea of how small the pieces were. This catheter does not have any pain associated with it--nothing basically--it is just there. The only thing that does happen is that you will be passing a few drops of blood through the penis on a regular basis for the first few weeks, at least I did, but you may not with so little prostate tissue left. Blockage with that small amount of prostate tissue is not likely. My blockage problem was according to Jenna in Toronto Sonablate CANAM was due to my large prostate--43.5cc,as well as the pain in urination. This was controlled by pain killers and anti-sposmatics. I can't see that you would have strictures because most of your prostate is gone. Any radiation treatment immediately increases your chances of incontinuence and erectile dysfunction as the radiation will have damaged surrounding structures and that is its the main problem. Radiation damages the DNA of cells as it passes through those cells. More damage is done the greater the concentration of rays. Radiation operates under the concept that you destroy the prostate tissue by damaging the DNA of the cells to a point that the DNA cannot repair itself and therefore the cell dies. The radiation is focused on the prostate but the rays coming through other structures to its focal point-- the prostate, can potentially damage the tissues in those structures.
Eric's problem with strictures seems to be related to the growing cancer within the prostate. From reading on early HIFU procedures it seems that the doctors only treated part of the prostate; that part containing the cancer. Now, and I am not sure when this started, the doctors destroy the entire gland and no longer only treat the cancer areas because biopsies don't find all of the cancer. Whether Eric had that type of procedure or not I don't know. Some of the other stories indicated that patients have had strictures but managed to get them corrected with a lot less problem than Eric.
As you can see I am bias towards HIFU because it may create problems after the procedure but so do the other types of procedures. Read the surgery stories. One can generally deal with HIFU problems and they are not long lasting. Some procedures may not show the problems initially as radiation but they can show up 6 or 8 months down the road and these problems are permanent.
No matter how one looks at the problem of prostate cancer, it is more difficult to handle than the common types of surgery such as rotary cuff repair, repair of knee cartilage, hernia surgery etc. The prostate is involved with urinary and reproductive functions and as such is in continually use. Any disruptions to the prostate cannot have the gland left in a non-functional position like a broken arm in a sling to rest while it is repairing.

Re: Re: Re: hifu mindwarp trivia from planet earth

Thank you for this informative account. My husband had HIFU treatment on 16.08.09 with Sonablate. He had a supra-pubic catheter fitted with which he seems to cope very well; he changes his dressing himself and the wound is clean . Recovery from the anaesthetic and Codamol intake caused constipation problems which were quickly alleviated with the usual remedy within 2 days. He passed blood and debris for 2 days following the intervention (in the catheter bag and occasionally when he managed to void a little from the penis). However, for a few days the urine was very clear and odourless. He passed blood and debris again 4 days later and although at times, he was able to void quite well, from dribbles to a small jet, he still hasn't managed to reduce the left over urine from the bladder to the recommended 100 ml. His catheter bag still collects between 200 and 400 ml post void. It is now 14 days since the intervention,he still passes debris and blood; his urologist has been very supportive and advised him to persevere and bide time. Is this usual? He is keeping his fluids up as instructed but can't wait to have his catheter removed. Is the fact he didn't start passing blood and debris until about 5 days following the HIFU treatment has a bearing on these symptoms? Thanking you. Frankie

Re: Re: Re: Re: hifu mindwarp trivia from planet earth

He can pass blood for quite some time into weeks but the passing of debris can last 6 to 8 months. I started to pass larger chunks around the 5 to 6 month times and then some later almost around 8 months. These larger chunks don't hurt just give you a weird feeling for 2 or 3 seconds as they pass out. I still experience the odd time with very fine debris that just clouds the urine still at 9 months.
You can have the catheter for upto 5 weeks but it varies from person to person. I have talk to some men who only had the catheter for about 2 weeks while I had it for 4.5 weeks. This is due to diffences is healing time between people so not a big deal. Don't worry about it. When you are approaching 4 to 5 weeks then you might want to talk to someone at USHIFU for ideas. You are undoubtedly following the recommendation of turning the stopcock off for 1.5 to 2 hours no more and then voiding through the penis following by emptying the bladder through the catheter. You need to this frequently and that can take some time before you reach the magic volume of 80% through the penis or less than 100 ml. Just be patient it will come.
The fact that he was not passing debris until 5 days after the procedure has no effect on anything. It takes a little time for the body to start to slough off the dead tissue as well as the body absorbing some of the damage tissue.

Re: Re: Re: Re: Re: hifu mindwarp trivia from planet earth

Thank you for responding so promptly and explaining so clearly. We are in the UK and my 61 year young husband had localised HIFU treatment in Bristol with the Sonablate 500. I have just told him to be patient even though he is not a very patient patient :-) We have email/phone contact with his urologist who has taken great care of him but we don't want to bother him too often as he is a busy man. We were concerned because we hadn't read of anyone keeping the supra-pubic catheter for longer than 2 weeks. Thank you for reassuring us. Frankie

Re: Re: Re: Re: Re: Re: hifu mindwarp trivia from planet earth

Do you have anyone in the UK Sonablate HIFU organization that is monitoring your husband over the first 5 weeks and that you can contact on a regular basis for help? In Canada the USHIFU (Sonablate 500 organization) has a nurse that contacts us weekly to discuss any problems and we have a 1- 800 number to call any time during the day for concerns and problems. If you don't have that support try contacting USHIFU at 1 888-874-4384 during the day at I believe 8am to 5pm est which is going to be about 8 to 10 hours later for you. I am hoping that since your husband has taken the Sonablate 500 treatment and if you don't have any support that they might help you out.

Re: Re: Re: Re: Re: Re: Re: hifu mindwarp trivia from planet earth

Thank you, I never thought of them; we have HIFU UK over here and someone did contact my husband prior to his treatment to explain everything and offer support, we never thought of after care.

http://www.ukhifu.co.uk

Brian is passing blood and debris and has had a couple of what he calls 'longer streams' rather than 'jets'of urine then not much to shout about for a couple of days then more fluid streams again yesterday. He is still not voiding enough to have the catheter out though. Fingers crossed it happens soon! Does more continuous voiding happen all of a sudden? Thank you for your support, Frankie

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Replying to:

Do you have anyone in the UK Sonablate HIFU organization that is monitoring your husband over the first 5 weeks and that you can contact on a regular basis for help? In Canada the USHIFU (Sonablate 500 organization) has a nurse that contacts us weekly to discuss any problems and we have a 1- 800 number to call any time during the day for concerns and problems. If you don't have that support try contacting USHIFU at 1 888-874-4384 during the day at I believe 8am to 5pm est which is going to be about 8 to 10 hours later for you. I am hoping that since your husband has taken the Sonablate 500 treatment and if you don't have any support that they might help you out.

Re: Re: Re: Re: Re: Re: Re: Re: hifu mindwarp trivia from planet earth

The stream and the volume slowly increases but drinking lots of water, in my case I was drinking about 3 to 3.5 liters; way more than I was expected, but according to the HIFU doctor it would preventing any infection and I suspect it would also help bring the flow back. When I discovered that I was drinking too much and reduced the amount of water to the 1.5 liters my flow was good. It was the frequency that was the problem and that was corrected with the decrease in the amount of water consumed. My suggestion would be to increase the amount of water you consume. It will not hurt anything and it may help get the flow back sooner.

Re: Re: Re: Re: Re: Re: Re: Re: Re: hifu mindwarp trivia from planet earth

Brian had at long last his supra-pubic catheter removed last Thursday, 7 weeks from the date of the hifu treatment, ouf! The doctors checked with a camera and ultrasound that there were no obstructions and were satisfied that there weren't. He has been given and shown how to use pre-lubricated urethral intermittent catheters but doesn't seem able to manage, he tells me it is painful to insert. I suggested he'd go to visit his GP but to no avail. Consequently, he gets up every 2 hours at night to void and every 2 to 3 hours during the day. Is this likely to improve with time? He may be drinking too much fluid during the day. Your thoughts are usual are welcome. Kind regards,
Frankie

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Replying to:

The stream and the volume slowly increases but drinking lots of water, in my case I was drinking about 3 to 3.5 liters; way more than I was expected, but according to the HIFU doctor it would preventing any infection and I suspect it would also help bring the flow back. When I discovered that I was drinking too much and reduced the amount of water to the 1.5 liters my flow was good. It was the frequency that was the problem and that was corrected with the decrease in the amount of water consumed. My suggestion would be to increase the amount of water you consume. It will not hurt anything and it may help get the flow back sooner.

Re: Re: Re: Re: Re: Re: Re: Re: Re: Re: hifu mindwarp trivia from planet earth

The biggest question is "how much water is he drinking?" He should be down to about 48 ounces a day. When they removed the suprapubic catheter was he able to urinate through the penis so that there was only 100 ml or less in the bladder which was emptied through the catheter? How many weeks or months has it been since he had his procedure?
I know in my case I was up several times about 4 which was about every two hours during the night to urinate. I could only hold about 150ml. Reducing your intake of water during the day to the 48 ounces and taking no water after supper will help with the getting up during the night. This information was given to me by the HIFU nurse that help me extensively when I had the problems after the treatment. I am now approaching 1 year after my treatment and now, I only get up at night twice like before the treatment. My voided volume was 200 to 250 ml. I talked to my urologist and he prescripted Dom-Oxybutynin 5mg to calm the bladder with the result that my voided volume has increased to 300 ml at times and once 400ml. There are times during the day that I feel that I have to go maybe 2 hours or so after I went before. This is getting better and I can stop the sensation and so prolong the interval between urinations. I hope this will help.

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