My HiFU Trip

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

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

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 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!

C^Cedar

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

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