HIFU (High Intensity Focused Ultrasound)

HIFU Notes

I haven't seen much in this group about HIFU, but after my 6 weeks of
research into my treatment options, I have decided to undergo HIFU.

I'll try and update this group again after the procedure

My Background:
Age: 51
PSA 0.6
Gleason 3+3=6

They would have never found the cancer as my PSA was so low and my DRE
was always negative but a bad family history (father & brother)
convinced the family Dr to send me to a urologist who "felt" something
wasn't right - ordered a biopsy and bingo - there it was.

I looked at all the regular treatments and did my research doing a
comparison on multiple aspects. I spent every weekend and evening
reviewing studies and reading the literature before deciding upon this
procedure. If you are reading this from the USA and have never heard
of it - it's probably because its not FDA approved - you need to go to
Canada or Europe to have it done. The USA is doing some clinical
trials at the moment

If you're in Canada and you haven't heard of it - it's probably
because its low popularity is due to the fact that the Medicare system
doesn't cover it - get your personal cheque book out. For more
information you can go to www.hifu.ca (and then start following
links, or just google hifu.)

HIFU is a less-invasive (than surgery) approach to removing the
prostate (very simplistically - ultrasonic sound waves are focused
into the prostate overheating and thus killing all cells, the
prostate subsequently breaks down and exits your body in your urine).
Some nice features (in my opinion) - you can go back to work the next
day, low ED issues (higher opportunity for nerve sparing), low
incontinence, repeatable procedure, minimal side effects, low risk. I
can post a more detailed analysis if there is interest.

My urologist tried to talk me out of it initially and said that there
were some bad side effects like rectal fistula. Turns out this
happened a long time ago, the technology has advanced and there hasn't
been a recurrence in 5 years (there are 2 technologies out there -
ablatherm and sonablade - I like ablatherm better due to its safe
guards against side effects - your opinion may vary!)

Monday I go to Toronto and meet the Dr and the anaesthetist. Tuesday
I go under a general and spinal anaesthetic and have the procedure
done 2 hours). Then I can walk back to my hotel, go out for dinner
and enjoy the rest of the day. Wednesday I fly back home (Calgary)
and Thursday I can go back to work (I'll probably take a couple days
off any way - its been a stressful time these last couple of months!)


I'll try and provide an update next week!

Ken

On Fri, 09 May 2008 18:20:21 -0600, wiens.ken@gmail.com wrote:

>I haven't seen much in this group about HIFU

Get yourself comfy and go here...

http://tinyurl.com/56664d

(sorted for relevance but check headings and dates)

....plenty of detail, good read.

(Mike, let me know if you need an agent - 15% + camel hair coat and
cigars)


Hope your hifu goes well!

<wiens.ken@gmail.com> wrote in message
news2p924tek8grjfcodcschh0h88qatur6q8@4ax.com...
> HIFU Notes
>
> I haven't seen much in this group about HIFU, but after my 6 weeks of
> research into my treatment options, I have decided to undergo HIFU.

You are correct, Ken. Of the 800+ people I've seen come (and some go), only
two have undergone HIFU: HIFU Mike and oseivers.


> I looked at all the regular treatments and did my research doing a
> comparison on multiple aspects. I spent every weekend and evening
> reviewing studies and reading the literature before deciding upon this
> procedure.

That's our advice to all new members of the club. Research, research,
research and then make a decision.


> Monday I go to Toronto and meet the Dr and the anaesthetist. Tuesday
> I go under a general and spinal anaesthetic and have the procedure
> done 2 hours). Then I can walk back to my hotel, go out for dinner
> and enjoy the rest of the day. Wednesday I fly back home (Calgary)
> and Thursday I can go back to work (I'll probably take a couple days
> off any way - its been a stressful time these last couple of months!)
>
>
> I'll try and provide an update next week!

Good luck, Ken. Please let us know how it goes.


--
PSA 16 10/17/2000 @ 46
Biopsy 11/01/2000 G7 (3+4), T2c
RRP 12/15/2000 G7 (3+4), T3cN0M0 Neg margins
PSA <.1 <.1 <.1 .27 .37 .75 PSAD 0.19 years
EBRT 05-07/2002 @ 47
PSA .34 .22 .15 .21 .32 PSAD .056 years
Lupron 07/03 (1 mo) 8/03 and every 4 months there after
PSA .07 .05 .06 .09 .08 .132 .145 PSAD 1.4 years
Casodex added daily 07/06
PSA <0.04, <0.05, <0.04, <0.04, <0.1 2/12/08
Non Illegitimi Carborundum

On Sat, 10 May 2008 09:36:06 +0100, rosbif wrote:

>On Fri, 09 May 2008 18:20:21 -0600, wiens.ken@gmail.com wrote:
>
>>I haven't seen much in this group about HIFU
>
>Get yourself comfy and go here...
>
>http://tinyurl.com/56664d
>
>(sorted for relevance but check headings and dates)
>
>...plenty of detail, good read.
>
>(Mike, let me know if you need an agent - 15% + camel hair coat and
>cigars)
>
>
>Hope your hifu goes well!

Here's another article. This is written by myn Urologist who performed
my TFT on me. Soon they will be conducting HIFU clinical trials too at
the University of Colorado.

http://www.cancernetwork.com/prostat.../10165/1146531

On Sat, 10 May 2008 09:36:06 +0100, rosbif wrote:

>On Fri, 09 May 2008 18:20:21 -0600, wiens.ken@gmail.com wrote:
>
>>I haven't seen much in this group about HIFU
>
>Get yourself comfy and go here...
>
>http://tinyurl.com/56664d
>
>(sorted for relevance but check headings and dates)
>
>...plenty of detail, good read.
>
>(Mike, let me know if you need an agent - 15% + camel hair coat and
>cigars)


To Ken.. but first…

Blimey Rosbif!

I thought the usual suspect contributors on this NG and a couple of
lurkers might have read my several comments on being a guinea-pig for
HIFU. But clicking your tinyurl
and seeing my stuff strung over several Google pages - no doubt
viewable by the common herd as well as our few select peers here - I
felt a bit like I'd been caught trousers-down in a shop window. Even
the Duke of Ed (or one of his aides) can surely Google - might he be
looking too? - with the Queen chipping in as a caring wife? Rosbif, we
could now enter exalted company - thanks to you! (Medical advisers -
Knighthoods???)

Re you agency possibility, however, ahem, I have already signed a
contract (on an authentic Guinness beer mat) with a high-flying exec
called Arthur Daley, who happened to spot your collection of my work.
I know he's the tops because he assured me he was. Indeed, after a
successful career repairing and selling second-hand East-German
Skodas, he has recently become a full-time agent, including selling
Harry Potter to Arsene Wenger for £20,000,000. Look out for the name
he tells me - Harry I mean not Arsene. He's the next big thing
apparently. Also, Arthur already has his own camel-hair coat, albeit a
shade moth-eaten and his own cigars (Dutch Panatellas) which makes him
less expensive to keep. We didn't discuss commission rates because he
said he would tell me what they were after I'd paid his annual fees.
He assured me they would be reasonable. That sound fair and less than
15%. He seemed to think I was some silly old dodderer.

But seriously (as much as I hate to be) Rosbif, you're a great guy for
sorting all my HIFU mish-mash out. Ta. And you gave me a great big
guffaw - always welcome!!

For ken:
You've got Rosbif so you don't really need me. But I'm always
available for questions, any time. You're doing exactly the right
thing, in my one anecdotal opinion. I've had two HIFU's (Sonablate)
one in 2006 which ablated the prostate and a second in 2007 which
blasted my left seminal vesicle. Some small problems along the way -
only one of which seemed difficult at the time and which, talking to
other patients at the hospital, I seemed to have been the exception in
having it.

Quick summary? Primary sources killed. Total side effects as of today?
- occasional small leaks, easily dealt with. Then read all the S/E's
the poor ADT and radiation guys go through to get their primary
sources knocked off. As for some extreme fatigue and other stuff, as
my GP tells me, I'm getting on a bit I was 78 and 79 yrs of age at
the procedures.

Big difference me and your case is that I was dx Gleason 9, PSA 14;
and I've always anticipated therefore micro-nasties would have escaped
and sure enough they're now in the lymph node. You're G 6 - and my bet
would be that in a day your primary will be clobbered well and truly
by the HIFU and the micros potential with them. All for a couple of
weeks of minor discomfort.

A couple of comments on your post:

>you can go back to work the next
>day, low ED issues (higher opportunity for nerve sparing), lower
>incontinence, repeatable procedure, minimal side effects, low risk.

Agreed. And I am proof of the 'repeatable' - still without nerve
damage. Add no cuts, stitches, or post-op blood or pain.

>there are 2 technologies out there -
>ablatherm and sonablade - I like ablatherm better due to its safe
>guards against side effects - your opinion may vary!

I was in the care of a top HIFU team at University College Hospital
London, under the surgeon leading early trials and pretty certainly
the most experienced in this field, Mark Emberton. I take that into
account also in my results. They use the Sonablate 500 system. I can't
quite see how Ablatherm can necessarily assure better side-effects.
Couldn't have done for me. Anyway I would have thought that was a
function of the skill of the surgeons, and the accuracy of the
equipment. As to the latter, here's the opinion of the urologist
consultant, a very bright guy, who referred me for the treatment to
UCHL:

..…"I use the Sonablate system because there is good reason as
it is possible to visually direct the treatment, which is not possible
with the HIFU (i.e.Ablatherm - MikeHi edit insert) system. As such the
PSA falls after treatment with the Sonablate 500 are far greater."……

See Marc Laniado's full description at:
http://www.drmarc.co.uk/Prostate%20cancer/HIFU.htm

I'm sure you'll be fine Ken and let us know how you progress.
Good luck.

Very best wishes to all.
MikeHi

On Sat, 10 May 2008 22:08:35 +0100, mikehi@anon.com wrote:

>Re you agency possibility, however, ahem, I have already signed a
>contract (on an authentic Guinness beer mat) with a high-flying exec
>called Arthur Daley, who happened to spot your collection of my work.
>I know he's the tops because he assured me he was. Indeed, after a
>successful career repairing and selling second-hand East-German
>Skodas, he has recently become a full-time agent, including selling
>Harry Potter to Arsene Wenger for £20,000,000. Look out for the name
>he tells me - Harry I mean not Arsene. He's the next big thing
>apparently. Also, Arthur already has his own camel-hair coat, albeit a
>shade moth-eaten and his own cigars (Dutch Panatellas) which makes him
>less expensive to keep. We didn't discuss commission rates because he
>said he would tell me what they were after I'd paid his annual fees.
>He assured me they would be reasonable. That sound fair and less than
>15%. He seemed to think I was some silly old dodderer.

Looks like I'll have to send the boys round!! - I know all about that
Daley geezer - queers everyone's pitch.
>
>But seriously (as much as I hate to be) Rosbif, you're a great guy for
>sorting all my HIFU mish-mash out. Ta.

Nooooo problem me old china!! - it was a doddle.
Google/more/groups/Advanced Groups Search, stick Hifu in the first
field ("with all of the words"), alt.support.cancer.prostate in the
'return only messages..group' field, and your good self's handle in
the author box. The tiny url is the cherry on the top. Look,
<conspiratorially> tell you what....it was that easy...we'll drop the
taste down to only 10%, I supply my own second hand coat - nice
mock-astrakan collar - you bung me a coupla cartons of Wills Woodbines
and let's not hear any more about that ponce Daley.

<taps nose> 'Nuff said.

On Sun, 11 May 2008 18:58:48 +0100, rosbif wrote:

>On Sat, 10 May 2008 22:08:35 +0100, mikehi@anon.com wrote:
>
>>Re you agency possibility, however, ahem, I have already signed a
>>contract (on an authentic Guinness beer mat) with a high-flying exec
>>called Arthur Daley, who happened to spot your collection of my work.
>>I know he's the tops because he assured me he was. Indeed, after a
>>successful career repairing and selling second-hand East-German
>>Skodas, he has recently become a full-time agent, including selling
>>Harry Potter to Arsene Wenger for £20,000,000. Look out for the name
>>he tells me - Harry I mean not Arsene. He's the next big thing
>>apparently. Also, Arthur already has his own camel-hair coat, albeit a
>>shade moth-eaten and his own cigars (Dutch Panatellas) which makes him
>>less expensive to keep. We didn't discuss commission rates because he
>>said he would tell me what they were after I'd paid his annual fees.
>>He assured me they would be reasonable. That sound fair and less than
>>15%. He seemed to think I was some silly old dodderer.
>
>Looks like I'll have to send the boys round!! - I know all about that
>Daley geezer - queers everyone's pitch.
>>
>>But seriously (as much as I hate to be) Rosbif, you're a great guy for
>>sorting all my HIFU mish-mash out. Ta.
>
>Nooooo problem me old china!! - it was a doddle.
>Google/more/groups/Advanced Groups Search, stick Hifu in the first
>field ("with all of the words"), alt.support.cancer.prostate in the
>'return only messages..group' field, and your good self's handle in
>the author box. The tiny url is the cherry on the top. Look,
><conspiratorially> tell you what....it was that easy...we'll drop the
>taste down to only 10%, I supply my own second hand coat - nice
>mock-astrakan collar - you bung me a coupla cartons of Wills Woodbines
>and let's not hear any more about that ponce Daley.
>
><taps nose> 'Nuff said.
>
*Two* cartons Woodbines! You'll be wanting Swan bleeding Vestas next.

Well it's now been almost 2 weeks since my HIFU treatment.

I was under a spinal and general anaesthetic so I don't remember
anything after sitting on the operating table (Well actualy I do
remember a very pretty nurse - but that's another story). T he
procedure started at 10:00 AM and at 4:00 PM I walked out of the
clinic and back to my hotel (less my prostate) (2 hours for the
procedure followed by a few hours to sleep off the anaesthetic).

That evening my wife and I met up with my neice and we enjoyed a pint
at a local Irish pub along with dinner. The next day we toured a
local museum (Royal Ontario Museum) and then flew back home.

I'm on a catheter for 2 weeks - Which will be over in another 2 days.
It's been a bit of a nuisance for sure and I can't wait to be rid of
it. A few things to make it easier:

Don't use surgical tape on your legs to hold the cathetert in place -
ripping the hair out of your leg is painful. Instead cut off the
elastic top of surgical stockings and use it instead - no leg hair
grabbing pains!

Use an ointment like polysporin on the penis end and the first inch of
the catheter. If any blood comes out around the catheter this keeps
it from hardening and poking the end of your penis. (In HIFU some
blood is expected to emerge around the catheter as a small amount of
the dead prostate tissue comes out this way)

Other than that, the procedure has been pretty much a non event. I've
been back at work since the procedure (took an extra 2 days off after
the procedure as I was a bit tired after the stress of the previous
few months). The catheter comes out Monday morning but I think I'll
work form home the rest of Monday - just in case there are any
unexpected muscle control side effects! I do get to keep both
sphincter muscles - but they've been wrapped around the catheter for a
while and I'm told it can take up to 3 months to regain full control
(most get it back sooner). I'm told to watchout for a lack of
control or not voiding properly (small stream). About 12% don't void
properly and (I think ) about 5% get a new catheter for another 7
days. I'll use flomax for 30 days after the catheter comes out (start
2 days before it is removed).

As for nerve sparing - the Dr was originally not optimistic as the
cancer was in both sides of the prostate. However, after the
procedure he thinks things could be OK as the nerves appeared to be
almost an inch away from the prostate so heat splatter effects should
be minimal (we'll see!)

So far my impressions of HIFU are that it is a great procedure.
Minimal downtime, and (so far) limited side effects. So far it gets
my recommendation (along with Dr Orovan who did the procedure).

For anyone in this group interesting in geocaching (a gps treasure
hunting game), I left a travel bug in a geocache in Toronto called
"Prosty the PSA man" Geocachers who find it (a model prostate made of
wood and a short rubber hose) get a message on the geocaching website
reminding them to get their PSA checked - my small contribution to the
public education effort!

Ken



On Fri, 09 May 2008 18:20:21 -0600, wiens.ken@gmail.com wrote:

>HIFU Notes
>
>I haven't seen much in this group about HIFU, but after my 6 weeks of
>research into my treatment options, I have decided to undergo HIFU.
>
>I'll try and update this group again after the procedure
>
>My Background:
>Age: 51
>PSA 0.6
>Gleason 3+3=6
>
>They would have never found the cancer as my PSA was so low and my DRE
>was always negative but a bad family history (father & brother)
>convinced the family Dr to send me to a urologist who "felt" something
>wasn't right - ordered a biopsy and bingo - there it was.
>
>I looked at all the regular treatments and did my research doing a
>comparison on multiple aspects. I spent every weekend and evening
>reviewing studies and reading the literature before deciding upon this
>procedure. If you are reading this from the USA and have never heard
>of it - it's probably because its not FDA approved - you need to go to
>Canada or Europe to have it done. The USA is doing some clinical
>trials at the moment
>
>If you're in Canada and you haven't heard of it - it's probably
>because its low popularity is due to the fact that the Medicare system
>doesn't cover it - get your personal cheque book out. For more
>information you can go to www.hifu.ca (and then start following
>links, or just google hifu.)
>
>HIFU is a less-invasive (than surgery) approach to removing the
>prostate (very simplistically - ultrasonic sound waves are focused
>into the prostate overheating and thus killing all cells, the
>prostate subsequently breaks down and exits your body in your urine).
>Some nice features (in my opinion) - you can go back to work the next
>day, low ED issues (higher opportunity for nerve sparing), low
>incontinence, repeatable procedure, minimal side effects, low risk. I
>can post a more detailed analysis if there is interest.
>
>My urologist tried to talk me out of it initially and said that there
>were some bad side effects like rectal fistula. Turns out this
>happened a long time ago, the technology has advanced and there hasn't
>been a recurrence in 5 years (there are 2 technologies out there -
>ablatherm and sonablade - I like ablatherm better due to its safe
>guards against side effects - your opinion may vary!)
>
>Monday I go to Toronto and meet the Dr and the anaesthetist. Tuesday
>I go under a general and spinal anaesthetic and have the procedure
>done 2 hours). Then I can walk back to my hotel, go out for dinner
>and enjoy the rest of the day. Wednesday I fly back home (Calgary)
>and Thursday I can go back to work (I'll probably take a couple days
>off any way - its been a stressful time these last couple of months!)
>
>
>I'll try and provide an update next week!
>
>Ken

After two weeks, the first catheter removal attempt was made. 22
hours later I was back in emergency having it replaced. With HIFU you
get a coada (spelling?) catheter which is apparently a little
specialized. Either way, what a relief it was. Attempt # 2 is now
scheduled for next Tuesday morning (1 more week).

Ken




On Fri, 23 May 2008 23:30:24 -0600, ken.wiens@kgw-consultants.com
wrote:

>
>Well it's now been almost 2 weeks since my HIFU treatment.
>
>I was under a spinal and general anaesthetic so I don't remember
>anything after sitting on the operating table (Well actualy I do
>remember a very pretty nurse - but that's another story). T he
>procedure started at 10:00 AM and at 4:00 PM I walked out of the
>clinic and back to my hotel (less my prostate) (2 hours for the
>procedure followed by a few hours to sleep off the anaesthetic).
>
>That evening my wife and I met up with my neice and we enjoyed a pint
>at a local Irish pub along with dinner. The next day we toured a
>local museum (Royal Ontario Museum) and then flew back home.
>
>I'm on a catheter for 2 weeks - Which will be over in another 2 days.
>It's been a bit of a nuisance for sure and I can't wait to be rid of
>it. A few things to make it easier:
>
>Don't use surgical tape on your legs to hold the cathetert in place -
>ripping the hair out of your leg is painful. Instead cut off the
>elastic top of surgical stockings and use it instead - no leg hair
>grabbing pains!
>
>Use an ointment like polysporin on the penis end and the first inch of
>the catheter. If any blood comes out around the catheter this keeps
>it from hardening and poking the end of your penis. (In HIFU some
>blood is expected to emerge around the catheter as a small amount of
>the dead prostate tissue comes out this way)
>
> Other than that, the procedure has been pretty much a non event. I've
>been back at work since the procedure (took an extra 2 days off after
>the procedure as I was a bit tired after the stress of the previous
>few months). The catheter comes out Monday morning but I think I'll
>work form home the rest of Monday - just in case there are any
>unexpected muscle control side effects! I do get to keep both
>sphincter muscles - but they've been wrapped around the catheter for a
>while and I'm told it can take up to 3 months to regain full control
>(most get it back sooner). I'm told to watchout for a lack of
>control or not voiding properly (small stream). About 12% don't void
>properly and (I think ) about 5% get a new catheter for another 7
>days. I'll use flomax for 30 days after the catheter comes out (start
>2 days before it is removed).
>
>As for nerve sparing - the Dr was originally not optimistic as the
>cancer was in both sides of the prostate. However, after the
>procedure he thinks things could be OK as the nerves appeared to be
>almost an inch away from the prostate so heat splatter effects should
>be minimal (we'll see!)
>
>So far my impressions of HIFU are that it is a great procedure.
>Minimal downtime, and (so far) limited side effects. So far it gets
>my recommendation (along with Dr Orovan who did the procedure).
>
>For anyone in this group interesting in geocaching (a gps treasure
>hunting game), I left a travel bug in a geocache in Toronto called
>"Prosty the PSA man" Geocachers who find it (a model prostate made of
>wood and a short rubber hose) get a message on the geocaching website
>reminding them to get their PSA checked - my small contribution to the
>public education effort!
>
>Ken
>
>
>
>On Fri, 09 May 2008 18:20:21 -0600, wiens.ken@gmail.com wrote:
>
>>HIFU Notes
>>
>>I haven't seen much in this group about HIFU, but after my 6 weeks of
>>research into my treatment options, I have decided to undergo HIFU.
>>
>>I'll try and update this group again after the procedure
>>
>>My Background:
>>Age: 51
>>PSA 0.6
>>Gleason 3+3=6
>>
>>They would have never found the cancer as my PSA was so low and my DRE
>>was always negative but a bad family history (father & brother)
>>convinced the family Dr to send me to a urologist who "felt" something
>>wasn't right - ordered a biopsy and bingo - there it was.
>>
>>I looked at all the regular treatments and did my research doing a
>>comparison on multiple aspects. I spent every weekend and evening
>>reviewing studies and reading the literature before deciding upon this
>>procedure. If you are reading this from the USA and have never heard
>>of it - it's probably because its not FDA approved - you need to go to
>>Canada or Europe to have it done. The USA is doing some clinical
>>trials at the moment
>>
>>If you're in Canada and you haven't heard of it - it's probably
>>because its low popularity is due to the fact that the Medicare system
>>doesn't cover it - get your personal cheque book out. For more
>>information you can go to www.hifu.ca (and then start following
>>links, or just google hifu.)
>>
>>HIFU is a less-invasive (than surgery) approach to removing the
>>prostate (very simplistically - ultrasonic sound waves are focused
>>into the prostate overheating and thus killing all cells, the
>>prostate subsequently breaks down and exits your body in your urine).
>>Some nice features (in my opinion) - you can go back to work the next
>>day, low ED issues (higher opportunity for nerve sparing), low
>>incontinence, repeatable procedure, minimal side effects, low risk. I
>>can post a more detailed analysis if there is interest.
>>
>>My urologist tried to talk me out of it initially and said that there
>>were some bad side effects like rectal fistula. Turns out this
>>happened a long time ago, the technology has advanced and there hasn't
>>been a recurrence in 5 years (there are 2 technologies out there -
>>ablatherm and sonablade - I like ablatherm better due to its safe
>>guards against side effects - your opinion may vary!)
>>
>>Monday I go to Toronto and meet the Dr and the anaesthetist. Tuesday
>>I go under a general and spinal anaesthetic and have the procedure
>>done 2 hours). Then I can walk back to my hotel, go out for dinner
>>and enjoy the rest of the day. Wednesday I fly back home (Calgary)
>>and Thursday I can go back to work (I'll probably take a couple days
>>off any way - its been a stressful time these last couple of months!)
>>
>>
>>I'll try and provide an update next week!
>>
>>Ken