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HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 3/25/2007 5:38 AM (GMT -7)   
After being diagnosed with a Gleason 7, 14.1 PSA, my Urologist in Dallas, Texas told me that because of my age (75) and several Heart bypass surgeries my alternatives were Radiation (they own their IMRT LAB) and Hormone Therapy.
I began taking Casodex for a month and was given a shot (three month) of what I imagine was Lupron.
Began looking for my own alternatives and decided to go to the Ablatherm HIFU being done in Munich at a major Hospital, mainly because of the reputation of the Doctors (Prof. Chaussy) and the fact they had done 1,600 treatments doing twice a day.
After I sent them all my information including Bone and CT Scans besides the Biopsy report, I was told thold that I was the perfect candidate for HIFU and quoted me a quote of more or less 10,000 all inclusive.
I was given an appointment for March 1, and was seen by one of their Urologists Dr. Neurmayr who himself did an ultrasound of my prostate and ordered an EKG, and was interned and prepared me for next day.
On March 2, I was given an epidureal anesthesia which I did not feel at all, and they placed my legs in what I assume is a gynecological position, and they placed a curtain at my waist and then I woke up briefly to take me to the HIFU Room, which I slept through and woke up in a recovery room with terrible shivers which was told are common after that anesthesia.
Next day I was taken to my requested private room and felt pretty good considering I had the two catheters.
Although English was no problem with the Doctors, I was fortunate that my son in law that accompanied me and travels constantly to Germany on business did pretty good at translating.
Dr. Steil who I beleive did the HIFU and followed up on me constantly was incredible as the rest of the staff.
Prof. Chaussy and Dr. Steil came to see me with the good news that after reviewing all the remaining tissues that were left in the TUR material of the prostatic gland they found no evidence of malignancy.
Next day a Doctor removed my penis catheter and was told to urinate which I did and initially it came out with some blood, but then I began to urinate as I had not done in decades.
Unfortunatelly next day the system got clogged up and I could not pass any urine, and Dr. Steil with incredible sensitivity ran a catheter to the bladder and then injected what seemed alot of water into my penis and was told to expect the pressure in my bladder. When that happened he opened up one of the external catheters tubes and all that was clogged up including all the water were releaased.
Since that happened the entire schedule was postponed and I was finally released on the 12th with instructions to enjoy the Munich attractions for a few days before checking me out, which happened on the 14th when a Dr. did an ultrasound of the bladder and kidneys and since evrything was OK, I visited with Prof. Chassy, and extended my thanks to himself and his staff.
I have unfortunatelly been in some top Hospitals in the US and Mexico, and there is really no way I can compare the tratment and dedication given to me in Munich.
My all-inclusive Hospital Bill was under 8,000 Euros, plus Hotel stay and was suggested to travel First or Business Class, so the total bill was under $20,000.00
I have been home for over a week and in recovery, and will probably stay home at least a couple of weeks. I have been taking a couple of pain pills about twice a day and some orange pills that I was told serve as a minor relief from the burning when urinating.
The only other thing in addition is that I inject myself a dosis of Blood Thinner which continue for another week.
As to some additional information to guys in initial stages of PC, HIFU is done and accepted by all Countries in the European Union plus Japan, Russia, Korea, and Mexico.
Munich has a Proton Center a couple of miles away from the Hospital I was at, and was told Doctors about it and they said, "Sure, we do radiation when there is no other alternative"
Both HIFU equipments Sonnablate and Ablatherm and under Class III Clinical trials by the FDA, and I am sure they will be accepted as common practice when all the expensive Radiation Centers are depreciated. With over 10 years of experiance doing HIFU in Countries just as advanced as ours that should be accelerated and not wait for more patients with burned out holes in both Rectum and Urethra.
 
Should you want additional information, contact me and I'll send you my e-mail address or phone number
 
HIFU
 
 

GreenAcres
Regular Member


Date Joined Jul 2006
Total Posts : 474
   Posted 3/25/2007 5:52 AM (GMT -7)   
I just have to say - what an excellent post! And it speaks not only to alternatives, when surgery is not recommended, but to the positive energy - mental and physical - anyone can have at any age.

Thank you!
Husband age 65
PSA on 5/1/06: 4.2 (had doubled in 13 mos. and rising monthly)
DaVinci Surgery 8/2/06
T2a (at biopsy)
T4c (at pathology) w/cancer cell leakage into fatty tissue
Post-Surgical PSA on 10/3/06 - undetectable!
Update: 11/1/06 - perhaps bladder neck involvement; 30%-50% chance of recurrence
Future: PSA tests twice-yearly for now
 


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 3/25/2007 6:27 AM (GMT -7)   
Hello friends....this is a really nasty way to put it and I'm sorry I am so blunt. I appologize in advance for being really rude however I want to make sure no one takes this same path. I may be rude but I hope it serves as a warning .... DO NOT DO THIS AT HOME FOLKS!

To HIFU,
You seem to have had a lucky outcome.... so far.... but my goodness, you have but a vague idea what is even being done to you at any given time. You swallow pills because some stranger says here...take this? You have medical treatment half way around the world yet can only imagine you are on Lupron? Guessing, asuming what your medical treatment is / has been? How very trustfull of you to asume these Doc's are being truthful and honest....because you sure don't have any proof! Keep in mind these countries have a history of using prisioners for medical testing. We usually restrict testing to rats in a lab. I say save the rats personally but, then again...I'm a real b*&%* anyway...LOL!

Everyone certainly has their ways of dealing with life. God Bless and keep you safe my friend.

Swim

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/25/2007 6:38 AM (GMT -7)   

To help keep the journey together.....  Ben's 1st posting began on 2-22-07

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

  HIFU  Thread:  Started by HIFU / Ben

 

 

Hi ~ Ben,

 

Each person has their way of dealing with their decisions.  We appreciate your information because others may want to do more research in this area.

 

The only area in your posting that I wish you would go and delete is the line just above ... "Should you want more information"....  It is insensitive and we all have to do our "own" research and make our "own" decisions.....

 

We wish you well in your recovery.

You are in our thoughts and prayers.

 

In Friendship ~ Lee & Buddy 

 

 


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 3/25/2007 9:17 AM (GMT -7)   
I am so so so sorry Bluebird if I offend you... but I don't agree with you on this one.

This man is being treated by people he doesn't know in a country he knows little about and with a questionable treatment for his clinical staging aaaaand, taking drugs without having proper informationon concerning their effects or actual use. His mode of treatment is a fairly accepted one even here. Although the U.S. has not quite finished phase III trials on HIFU, it is expected to be a good and viable choice for early stage cancer...of which this man was not! His staging was moderately agressive and reports are not conclusive which means he is iffy cancer free at best. What is on his side is actually his age! My fingers and toes are crossed any my prayers are with him that it the cancer is indeed gone for good!

I just want men and women to be informed and not throw caution to the wind. The dicisions we make are indeed our own in life and this gentleman can certainly dictate his own. My impression of his post was that he made his decision wihtout being properly educated at a few levels. Sorry to be so blunt but you all are such important pioneers to a growning population of cancer survivors. I have always felt men need more encouragement in being their own good advocates..... and it starts by getting good answers and solutions from quality health care professionals no matter where he may seek treatment.

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 3/25/2007 3:44 PM (GMT -7)   

Hey Swim…… 

 

You definitely did not offend me in any way possible…    tongue   

Our postings overlapped this morning……  and when mine posted I saw yours!!  And smiled… shaking my head “yes”… Swim is 100% right in her post.  I know you and respect you and your knowledge and your concerns for all of us… 

 

I think back on DWT/SL  and the “ordeal” they went through….  And would not wish this on anyone!

 

The following is the comment that I felt was insensitive….

Partial Quote from HIFU:  with burned out holes in both Rectum and Urethra.

 

In Friendship ~ to all of our forum family members….. bluebird ....chirp~chirp~chirping

 


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 3/28/2007 5:51 AM (GMT -7)   
Hi Guys:
I read your replies to my HIFU Journey. And I thought I explained that it was my trip.
Otherwise I will accept that I am an ignorant arse, but have been lucky so far, and at 75 I guess I have not done badly.
Now back to answer some questions
My local Doctors in Dallas are proffessionals in their fiels and practice in some of the best local Hospitals. I do take most of my advise from them, but if I am aware of critical problems like Radiation and know for a fact what it does, (My wife was diagnosed with inoperable lung cancer about 5 years ago, with a 7 cm. tumor, and the only alternatives were Radiation (8 weeks) and Chemo.The radiation reduced the tumor by 50% and together with the chemo has allowed her to be with us, but it did burn a hole almost straight through from the front where she had a thick scar for years and a bump at the exit part in her back.
Considering that any radiation to be done on my prostate would affect going through some very sensitive areas, and you experts will give you the percentages of problems that occur. I began looking for viable alternatives and found that two machines, Ablatherm made in Lyon, France and the other in the USA were being used to treat initial stage PC, and also recurrent PC from Radiation.
Ablatherms is made in France and as far as I can remmember has not had wars that took many prisoners since Napoleon, so I don't imagine swimom thinks of them. The other machine is Sonnablate made in the US, and some German prisoners were interned in Texas during the World War II, and insofar I know though their stay as almost a Summer Camp. The Japanes did not surrender and prefered to die, and the last group are the boys in Guantanamo but they are not considered prisoners but rather detainees, and I don't think the White House or the Army would allow any experimentation.
To reply to a second message, I am including a copy of the email from the Dr. in Munich after he received my reports.
"

Dear Mr. Trottner.

In my opinion, you are a good candidate for a HIFU-treatment. After having read all of your medical reports, the cancer seems to be localized on the prostate without any signs of a systemic scattering (there are no signs of  metastases, no enlarged lymphonodes). Nevertheless, with a PSA-range up to 14, there is the possibility, that the lymphonodes are affected, although it is not detected by the CT-scan.

Anyhow, we have a good chance to eliminate the cancer focus. For a localized prostate cancer there are two choices of local treatment, the radical prostatectomy and the HIFU-therapy. Because of your other diseases the radical operation is not recommended, but the HIFU is the best alternative method.

HIFU does not make the cancer more aggressive in case of a tumour relapse, which we see often after radiation or hormonal therapy (Gleason’s-score rises from 6/7 up to 8 or 9). HIFU can be performed two, even three times. If necessary you can have radiation and hormonal therapy after HIFU as a second line or third line reserve weapon.

We often treat patients with secondary diseases like heart diseases, because a radical operation is not recommended or possible. Side effects and survival rates are almost the same as with the radical prostatectomy (data of the past 12 years). This consultation is charge free. The costs for a HIFU-therapy inclusive the necessary previous transurethral resection of the prostate (TURP) are about 6500 Euros (€). This amount includes everything.

For more information check the following links:

www.edap-hifu.com and www.urotoday.com.

Don’t hesitate to ask for more details.

Best regards

Florian Hasner M.D.

senior staff member, department of urology

München-Harlaching "

Based on this and the infortmation I had gathered about Prof. Christian Chaussy, who is a well known professional ( just look him up on Google) and who co-chairs the Urology section of the Hospital., I asked for an early appointment and was in Munich within a week. Lucky??? I certainly think so.

The Hospital "Stadtisches Klinikum Munchen Gmbh, in Harlaching which is located in a forest in a suburb south of Munich and from what I could see had about 30 buildings including a nice Helicopter with Hangar, but bad parking areas. My son inlaw who accompanied me on the trip said it usually took him about 15 minutes per trip to and from his car to my room.

I am very happy with the results and after over 1600 treatments the people at the Hospital, I imagine feel as well.

Please delete from my initial posting the line "Should you want more information" that you consider insensitive. Cannot understand it as any information given is for their reasearch, as I am a patient not a Doctor.

All I did was send my Jouney as requested, I did not know just what you wanted or which policies to restrict myself too, and should you consider this not informative please just delete the whole thing.

 

Ben

 

bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/1/2007 10:29 AM (GMT -7)   

Hi ~ Ben,

 

You are 100% correct in posting ~ Your Journey  “My HiFU Trip”.  We stress here that “options” are what makes this forum so powerful.  Sharing our experiences. We don’t have to agree nor do we have to read any postings … so it is a choice/option we have.  And there are many out there that will lean toward this procedure and it is up to them to research.

 

Your journey is important because it is your journey!  Please ~ do not delete it.  And do continue to update us on your recover process… okay!!

 

I’ve learned a lot over the past 12 months…. April 3rd being our 1 year anniversary /surgery day…  and it is truly a learning experience for all of us.  Our paths may vary but we are in it for the same reason.  Finding a way to become “cancer free”.  And finding the way that is right for us! 

 

When I first came to this forum I was extremely afraid of the word “radiation” and “chemo”.  I have gained knowledge from members here and it’s given me the power to overcome my earlier fear of these treatments.  And I think the line in your posting that I tagged “insensitive” hit me at a very vulnerable moment ~ when a new best friend was finishing up radiation treatments and several other new friends are in the middle of treatment. 

 

Knowledge is Power…. and Power allows us to be open to learning…. And wading through the fears that sometime binds us into tunnel vision.  I have learned this over time with Jetguy, pcdave, and others…and continue to learn.  I personally would not go out of country to have a procedure done… but that’s just it… my personal option.  But then I said I’d never have radiation either…. And my mind has grown to know that if it is the only option for me at a given time ~ I don’t fear it as much now…  there are risks in any treatment/surgery and when doing research you learn about them. 

 

As I stated before….Each person has their way of dealing with their decisions.  We appreciate your information. 

 

YOU MAKE THE DECISIONS… YOU HAVE OPTIONS…

~ and ~

Your decision will be the right decision for you!!!

 

You are in our thoughts and prayers as we all move forward in our journeys…

In Friendship ~ Lee and her Buddy


mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


lawink
Veteran Member


Date Joined Oct 2006
Total Posts : 621
   Posted 4/1/2007 2:46 PM (GMT -7)   
Lee you say what you say so eloquently and right to the point. I totally agree. Stay with us HIFU!
;o) Bob & Linda
Bob (60) had laproscopic prostate surgery on Sept 27, 2006 - 2/12 malignant biopsy samples - gleason 3 + 3 = 6.  Follow up PSA results and pathology results received Nov 14th are NO MORE CANCER!  Gleason changed to a 3 + 4; cancer completely confined to prostate; (even a second more aggressive, previously undetected cancer)      PSA UNDETECTABLE November 2006 AND February 2007.   
 
Bob also takes Hydroxyurea to control Polycythemia (elevated red & white cells & platelets) has secondary condition . . Myelofibrosis) -- If anyone has experience or knowledge of these, please post us.


HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 4/2/2007 6:37 AM (GMT -7)   

Hi Guys:

It has been a month since my HIFU treatment and things are getting better daily.

No bad pain, but I guess I am a complainer.

My HIFU treatment included first a TUR_P, which has opened up and urine flows in volume and with pressure like I recall in the old days, but the catch is that it cames out with a burning sensation which is somewaht controlled by a pill prescribed by my local URO. But this phase is fortunatelly slowly disappearing.

I finally finished with the blood thinner injections that they had given me at the Hospital, so now I have to see my Cardiologist about restarting with Plavix and aspirin for my heart problem.

As I understand with HIFU, (HIGH INTENSIVE FOCUSED ULTRASOUND) they burned out the inside of the prostate leaving only an empty shell which began being very swollen, so I flet like having a tennis ball in my lower back so it was rather troublesome to sit, but now I thing it has been reduced to maybe a golf ball. Maybe that is telling me something.

My next URO visit and PSA is set for the first days in June, and was told that as long as it remains below 1.0, everything looks good.

I have slowly began driving and doing small chores and get back handling my one person business in my Home Office, and since it's Import-Export, is very interesting.

But evenings find me worn out so I am just watching TV or taking Siestas. I had been going to my GYM 4-5 timeas a week, but I was told to wait for at least a couple of months before going back, but I am requesting to OK my lap-swimming and I hope they give the Ok shortly.

Anyway, good luck everybody, and I'll be in touch in about a month

 

Ben


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 4/2/2007 7:43 AM (GMT -7)   
:-)   Linda you are a sweetie!! 
 
yeah   Hi Ben ~ good to hear you are taking the time for the healing/recovery process.  Today is our 1st year anniversary.... and it truly is a happy day.  We took the extra time to heal also.  Buddy took 2 months off from the Y! exercise program and gradually worked back into it. We now go every Tues & Thurs for a 2.5 hour workout with a swim at the end and a nice hot shower to top it off.   Hope you get the okay soon for swimming!!!!
 
Keeping you close in our thoughts and prayers...
In Friendship ~ Lee & Buddy 

mama bluebird - Lee & Buddy… from North Carolina

Link to our personal journey…>>>     Our Journey ~ Sharing is Caring 

April 3, 2006  53 on surgery day

RRP / Radical Retropubic Prostatectomy with "wide excision"

PSA 4.6   Gleason  3+3=6    T2a   Confined to Prostate

2nd PSA 02-06-2007 Less than 0.1 Non-Detectable :)


Dutch
Regular Member


Date Joined Feb 2007
Total Posts : 400
   Posted 4/2/2007 6:40 PM (GMT -7)   

Ben:

Good luck to you and looking forward to your report in the near future.  It's very important that all kinds of treatment options are found to help rid us of this Pca.  Maybe in the not too distant future HIFU will be available in the states - I know there is a study being done in TN now.

Dutch


Diagnosed Feb 2001  (Age 65)  Currently 71
PSA 4.8
Gleason 3 + 3 = 6
T2b
Completed Proton therapy @ Loma Linda - Aug 2001
5yr PSA   0.17
Have had no side effects.


HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 4/4/2007 6:35 AM (GMT -7)   

Hi Dave:

From the information I have gathered regarding HIFU Clinical trials in the US, they are placing too many restrictions when accepting patients. It looks like they are staring out with initial stages PC that had not received any other therapy. So they are not accepting a 12 year History of the about 10,000 procedures that have been done world wide.

I have found Doctors in Countries like Germany, UK, Australia, Spain, Japan, Russia Italy, Mexico etc. doing both or either the Ablatherm and Sonnablate systems that are somewhat different and each has been accepted by ther local health boards. I also know of top US Doctors going to Mexico and doing Sonnablate HIFU.

I think that the FDA should look into the ample history from top Hospitals and Practitioners World wide and not begin by trying to invent the wheel. The procedure works and has at least a 12 year History from top Hospitals and Doctors world wide.
Needless to say that authorizing HIFU in the US would save alot of unnecessay procedures, that can be avoided initially, plus possibly save billions
 
 
Ben

HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 5/3/2007 4:00 PM (GMT -7)   
At 60 days from my HIFU procedure, I visited with my Urologist at Presbyterian Hospital in Dallas, and I told him I feel very well, and only problem are occasional episodes of pee dripping while shaving, which I was told are temporary.
I received a report from my PSA of 4/30/07 as undetectable at <0.05 ng/ml", which I was told is a favorable prognostic finding.
I was also given the OK to begin going to the gym.

Good Luck, and I'll be back in about 3 months

Ben

Cedar Chopper
Regular Member


Date Joined Mar 2007
Total Posts : 432
   Posted 5/4/2007 3:40 AM (GMT -7)   

HIFU Ben and Other Forum Friends,

My (pre-surgery) research on HIFU indicated it is up-and-coming and promising -particularly as an alternative to radiation.

However, my research also indicated quite a few U.S. Physicians are involved in a kick-back scheme with researchers in Mexico where the referring U.S. Physician gets a per centage of the fee. I feel that his is ethically questionable - unless the referring physician (however much they endorse HIFU research) makes a disclaimer.  I also feel that such incentives can easily skew statistical data as the incentives can be linked to referrals with fewer co-morbidities.  At the very least, a more affluent population with more post-treatment options can inflate recovery rates.

I HAVE HEARD NOTHING about THESE KICKBACKS CONCERNING THE HIFU PROGRAM IN GERMANY/Demcratic Deutches Republic.

HIFU research is important and Ben's participation seems a good fit.  Swimom's comment that Ben was taking too big of a chance might have been stated more as an opinion (with some of the information I am certain Swim has on this topic but did not really convey)  - but still an opinion that should be considered.  I would add that these same types of considerations should be made whenever a Radiologist recommends radiation, a Urologist recommends surgery, or a patients's insurance seems to default to a Physician with very little experience.

The discussion of a research treatment option with a forum member that has undergone the treatment is a conundrum.  We want to hear about how promising HIFU is and support the member and the member's right to choose.  In this light, it is difficult to offer a post-op dissenting opinion.  And not offering a dissenting opinion might appear as an endorsement to "newbies."
 
For example, however strongly I feel (as many do here) that if the patient is healthy enough, radical prostatectomy is the safest bet (We will overcome incontinence and E.D!)- Still, I won't even offer a member deciding on a procedure an opinion about a choice between surgery and radiation (and HIFU) as this forum can never give us enough information about the individual patient and circumstances such that I would feel right about swaying the decision.  This forum is exceptional for its ability to communicate the decision-process (who-what-when-where--...), pre and post treatment support, and recovery prognoses for various treatments, and even personal experiences/endorsements.  The Forums weakness is in the liklihood the deciding member may skew the advice they recive here by selectively (consciously or unconsciously) disclosing personal information in an anonymous format.
 
Thanks to all of you here for the "family" your participation creates.
Families can be a little dysfunctional occasionally - but the love and support they bring outweigh the concern over a few honest disagreements.
 
I am naming my next breeding pair of German Shepherds Heilige Herzleucht and Gottes Gestesblitz.  (Heili and Gotti)  These German names translate: "Holy Light of the Heart" and God's (Ghost's) Good Idea.  This disclosure is by way of saying: Let's hope the German HIFU researchers don't get in such a hurry that they delay the adoption of real progress.
 
May God's Love be with you, always - in the Son!
 
CCedar
~~*~~*~~*~~*~~*~~*~~*~~*~~*~~*
2 Years of PSA between 4 and 5.5
Biopsy 23DEC06 
Only 5 percent cancer in one of 8 samples.
Gleeson 3+3=6
Radical Prostatectomy 16FEB07 at age 54.
1+" tumor - touching inside edge of gland.
Confined:)
***************
Texas Hill Country
FRESH Produce Department Manager
Have you had your 5 colors today?


Swimom
Veteran Member


Date Joined Apr 2006
Total Posts : 1732
   Posted 5/4/2007 7:59 PM (GMT -7)   
Jackc,

HIFU isn't our first member to choose this treatment and my "proposed" concerns were not concerning his decision to have HIFU exactly. Read again.

I do not propose to know all there is to know about anything but hey, everyone can have an opinion. I do have mine and sometimes I am passionate about them with no intention of causing a rift. Yes, I get really worried when a person, any person, takes a drug not knowing exactly what it is, what it does to his/her body and why he/she is taking a taking it. Knowing indications, contraidications and complications is what I do for a living so yeah, I have some education and experience on which to base some opinions. I believe the same holds true for any treatment regardless of choice. Maybe it's the Medic in me. My comments were not for or against treatment choices. HIFU has had good outcomes from what I have read in journals. My concerns are always for the well being of the patient! 28 years of being the patient advocate has to be worthy of at least an opinion.

God Bless, Swim

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/5/2007 7:37 AM (GMT -7)   

Hello Everyone,

I am Kitt and I am reading all your posts.............everyone of you has been honest, respectful and supportive of each other.

Ben chose his journey and treatment that he felt was best for him. I think the discussion re his decision had some great pros and cons.

The one thing that crossed my mind was the cost of the surgery and also being fortunate to have a son-in-law that spoke the language.

I know many people would find the price of leaving the country out of their range, but for Ben it was feasible.

I realize there is no price to high to save one's life or that of a loved one but reality is many people that get prostate cancer cannot come up with the money to receive treatment in another country. 

I am happy for your Ben and for all the others who have chosen their treatment preference and have had successful outcomes.

Bless you all.



 
Respectfully
 
Kitt
RN CCRN, Critical Care and Emergency Department Manager for 26 years.
 
Depression 25 years, Husband Crohns Disease 30 years
My Father and 5 siblings all died of Cancer. It is a subject close to my heart to help people with Cancer.
__________________________________________________ 
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.”
Rosalyn Carter
 


murph
New Member


Date Joined May 2007
Total Posts : 1
   Posted 5/9/2007 6:04 AM (GMT -7)   
Ben,
I am 100% with you. Congratulations on your treatment choice. I find it hard to belive that so many people in this country turn their nose up at this option. God willing, you and I will live to see hifu become a standard of care in the USA. This treatment, once approved, will make a tremendous difference in the lives of men who develop prostate cancer in the future. An unreasonable fear will be removed from the treatment decision equation. Once approved by the FDA most insurance companies should cover it (I hope).
I also chose Munich and Dr. Chaussy for my hifu. What a fantastic team they have over there. I had the procedure on 4-3-07(5 weeks ago). I couldn't be more pleased with my progress. Zero complications. Everything works! I await my first PSA test which will be on the 17th of May.
I had to travel over on the budget plan. Total cost for me and my wife came to just over $14,000 (no new car for a couple of years). A more frugial person could easily spend less.

I wish you well my friend. How was your first PSA reading? This is my first visit to this forum and I find it both supportive and thought provoking. Cedar Chopper is right when he talks about the "business of selling hifu". Munich is not in the "business" only in the treatment.
AGE    60
DX      2-14 07 
PSA     5.6
G/S     3+4
STAGE T2A
GLAND  19.5CC 10 OF 16 CORES +  9 CORES 5% 3+3   1 CORE 15% 3+4
 
TREATMENT CHOICE      HIFU
TREATMENT DATE         4-2-07
TREATMENT LOCATION   MUNICH GERMANY


HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 5/9/2007 6:30 AM (GMT -7)   

Murph:

I posted my first results on 5-03, from sample drawn on 4-30, they came out as undetectable at 0.05, and will post next results in three months.

Generally I feel very well without any side effects, and only a few drops while shaving occasionally.

I think that it cost me more for the whole trip  because I had a minor problem with my plumbing, that delayed my being checked out and I had to stay in the Hospital for 12 days, and waas so uncomfortable sitting downwhen released, that I switched over to first that was an additional 3,500, so I think that your cost should be the average. I also plan to keep my car an extra couple of years, and being optimistic about the future.

Best of Luck

 

Ben


jetguy
Veteran Member


Date Joined Sep 2006
Total Posts : 741
   Posted 5/9/2007 7:16 AM (GMT -7)   

Good Morning Ben,

My urologist is also at Presby Dallas.  I mentioned HIFU to him and he seemed to think it a viable alternative.  In the end, I decided on IGRT, but I gave HIFU a long look.  Was yours Sonoblate, or Ablotherm?  Keep us informed.

Regards,

Bill


Gleason 3+3=6, T1c, one core in twelve, another pre-cancerous.
62 years old and good health.  Married 37 years.  To same woman!
Began IGRT January 23, 2007. 


stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 5/9/2007 7:24 AM (GMT -7)   

Dear Ben

I am happy that you are doing well and that your indepth research and inclusion of physicians in helping you make the decision as well as coming here was very wise.

Your right about insurance, when the procedure is approved in our country the insurance companies will hopefully pay.

To be honest with you if it were my hubsand I would sell everything to get him whichever treatment he chose.  I don't need a lot of material things but I do need my husband. yeah

One of the best things about this forum as that people do speak out  and feel safe voicing their own opinions.

Everyone has informed themselves well and makes their own decision.

Gentle Hugs

 


 
Respectfully
 
Kitt
 
Moderator Prostate Cancer Forum
 
RN CCRN, Critical Care/ Emergency Department Mgr.
 
Depression 25 years, Husband Crohns Disease 30 years
My Father and 5 siblings all died of Cancer. __________________________________________________ 
"If you doubt you can accomplish something, then you can’t accomplish it. You have to have confidence in your ability, and then be tough enough to follow through.”
Rosalyn Carter
 


HIFU
Regular Member


Date Joined Feb 2007
Total Posts : 27
   Posted 5/9/2007 7:44 AM (GMT -7)   

Bill:

Initially I was with one of the Doctors at the same clinic, who had told me that he thought HIFU, was too experimental, and had suggested the IMRT and Hormones. After my return from Germany I was in pain and went back to see my Uro but he was out of town and another took my call, and he happened to be doing HIFU in Puesrto Vallarta. I switched over to him because of his experience with patients after the HIFU treatment.

At the Munich Clinic they do the Ablatherm and do the Tur-p before, but during the same procedure. They have done over 1,600 procedures, and are very good

 

Ben


KenW
Regular Member


Date Joined Mar 2007
Total Posts : 74
   Posted 5/10/2007 8:38 PM (GMT -7)   

Hifu,

Just had to clarify your statement or I should say your Doctors statement of :

"Munich has a Proton Center a couple of miles away from the Hospital I was at, and was told Doctors about it and they said, "Sure, we do radiation when there is no other alternative"
Having had Proton Beam Treatment and done much research on it I believe they are not very informed about the use and nature of Proton Beam Treatment. Protons are use primarily in early stage Prostate Cancer when it seems to be confined and not " when there is no other alternative".
I guess when you mentioned burning holes you were talking about more conventional radiation and not Proton Beams. Proton Beams do not burn anything outside of the targeted area. Low power when entering the body and nothing on the way out as the Beam stops at the Prostate. I believe more men would consider it if the price was more affordable. Without Medicare I could not have afforded it. Younger men don't have the Medicare option and I think that is sad.
It took 15 years and almost 11.000 patients before Proton Beam Therapy has been accepted by the Mayo Clinic as a viable Treatment with minimal side effects for Prostate Cancer Treatment. Hifu seems to be in that same catagory and will have it's time I'm sure.
 
Ken
 
 
 

Diagnosed with a Gleason 4X3. 1 out of 7 samples, Left Side. DRE showed Normal. Psa gradually crept to 10. Dropped to 6.4 with Alt. suppliments.
Proton Beam Therapy at Loma Linda 11-06. PSA at 1 yr. 1.7.


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/27/2007 7:29 PM (GMT -7)   

  :-)   Hi ~ Murph,

Please consider starting a Personal Thread sharing Your Journey with “all of us” and Newbies to come. It’s truly a wonderful gift… the gift of sharing.  Each journey is the same but different… 

That’s what makes this forum so powerful…. The Knowledge we gain from each other. 

Hope to welcome you soon!! and to have you share your PSA (May 17th) with us!!

In New Friendship ~ Lee & Buddy

«  bluebird ~  Moderator for Prostate Cancer Forum

Post Edited (bluebird) : 6/15/2007 8:17:09 PM (GMT-6)


bluebird
Veteran Member


Date Joined May 2006
Total Posts : 2542
   Posted 5/27/2007 7:31 PM (GMT -7)   

 Yea !  ~   Ben  *HIFU,

 

1st…..PSA…   !!!~~~~>>>  Woo~Hoo  <<<~~~~!!!  undetectable

 

Cause  for   celebration!!!!!

     What a wonderful day it is ~ each and every-day….

          Enjoy it to the fullest ~ friend.

 

Yippeeeee!!!!!! From  Lee & Buddy

 

*     *     *     *     *     *

The ultimate “goal”… we all strive for… Thank you for sharing ~ that your goal has been met….

It is very important to “all ”of us!  This is a way of positive feedback…

A way of showing others Hope… and a way of Sharing.  

J  Caring is Sharing ~  Thank You for Sharing  J

 

 

Threads Started by: Ben *HIFU

 

(Direct Link ~ just click on the title below and a new window will open!  

Reminder … click on the REFRESH icon once you get there)

2-22          HIFU 

3-25    My HiFU Trip

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