A Medical Adventure - HIFU

[Londear1992]

So glad to be back home from Germany after HIFU treatment. Alan had to have a TURP to remove calcium deposits followed by HIFU the same day since calcium deposits could have deflected the ultrasound beam. He had five days in the hospital. No suprapubic catheter needed and the catheter he did have came out within 48 hours of treatment. It was a semi-private room and they let me stay with him in the second bed and whenever they brought him meals, they brought them for me - almost like a hotel. Wonderful doctor and staff. Dr Thüroff is seen here with us in our room. Doc wanted him to stay for a few days after release to make sure all was well so we made the best of it - even though our suitcase was lost! Zero incontinence from Day 1. Now the wait for the three month PSA check up. Fingers crossed! This video shows the highlights of our medical adventure. vimeo.com/333384968

[Tall_Allen]

What PSA will you consider to be good?

[Londear1992 in reply to Tall_Allen]

We will be guided by what our urologist in Germany thinks is good, but a friend of ours who had the same doctor and procedure at the same hospital has had the following PSA levels over eleven years. Both patients had a hemi-ablation and so they each do still have one half a prostate. This means they will have more detectable PSA than a person with no prostate at all, and it will go up over time as they age just as cancer free patients have a PSA that does go up over time, but it should be low and the rise gradual as our friend's stats show:

HIFU in Mid September of 2007 and by mid November of 2007 his PSA was .10

2008 = .10

2009 = .10

2010 = .17

2011 = .27

2012 = .30

2013 = .40

2014 = .35

2015 = .30

2016 = .65

2017 = .65

2018 = .64

If Alan's stats follow a similar pattern, we will be very happy. It should be noted that our friend was 57 when he had his HIFU while Alan was 66, and that age difference could also make a difference.

[Tall_Allen in reply to Londear1992]

There is a "Stuttgart" definition of biochemical recurrence, which is nadir+1.2, but these definitions are very arbitrary:

onlinelibrary.wiley.com/doi...

[AlanMeyer Moderator]

Great video! It almost makes me want to go get HIFU to get the food, the beer, and the vacation. ... Well, maybe I'll just go for the food, beer and vacation and leave out the HIFU.

I'm impressed that you took this opportunity to enjoy life.

Alan

[Hindemith]

Very nice video, reminding me of trips there in my quasi-wasted youth! Not sure where you're from but I'm curious as to why you decided to go all that way for HIFU that is now offered here in the US by many practitioners, a few of which - to the best of my knowledge, e.g. Dr. Scionti in Sarasota - have quite a few of these under their scrubs. At any event I'm glad it was successful, sorry about the luggage, and envy you the scenery and general Gemutlichkeit. (can't find an umlaut here - sorry)

[Londear1992 in reply to Hindemith]

Hi, Hindemith. We decided on Dr Stefan Thüroff in Munich because he has been doing HIFU treatments for 23 years - one of the pioneers in this procedure. He had written a lot about his approach and this was readily available on-line. For three years he used to fly to the States for one week every month to teach medical professionals about HIFU.

We preferred the equipment he uses - the Ablatherm Focal One (he has been using this since 2013 while in the US we only just got our first Focal One on the East Coast at a New York City Hospital in January of this year.) We prefer the Ablatherm for numerous reason but particularly since it has a cooling system that prevents damage to the rectum, and also because it detects even the tiniest movements and shuts off instantly during the procedure so no damage is done to the patient inadvertently.

Lastly, the costs are way less in Germany. A HIFU treatment with Dr Scionti, who we do know to have an excellent reputation, would cost $25,000 while the procedure in Germany cost us $5,761.23.

So on the basis of cost, experience and equipment it made sense to us to head for Germany. The hospital we went to has an excellent track record as well. We asked what the recurrence rate was for prostate cancer patients who had their HIFU treatments there and we were told about 10%. It is 30% recurrence for radical prostatectomy or radiation patients in a large scale study done in the UK (and I would think it may well be the same in the US although it is not always easy to get those stats.)

In the end for us at least, it was a no brainer to go to Deutschland. I had forgotten how very beautiful the scenery is there and it was only a short drive to Austria. The vacay we managed to get was icing on the cake and it is so wonderful to have those memories to add to our experience.

I would also add that Dr Thüroff was so amazing in our view. He came to see us in the recovery room three times after the procedure and the last time he brought us a two page typed Surgery Report all in English. He always had time for us and was a very caring, thoughtful doc who answered all our questions. He visited Alan every day in the hospital. One in a million I would say.

Hope that answers your questions! Best to you! Londear

[Hindemith in reply to Londear1992]

Londear, this answers my questions in the extreme! Thank you so much for your quick, considered and extensive answer. I personally have a lot of decisions to make for my own treatment but have certainly been considering HIFU (with, gulp, its $25K price tag). This gives me a lot of food for thought, along with those delicious-looking cakes mit Schlagobers. I'll look up Dr. Thuroff and his team. (PS I'm not sure of the protocols on this forum, but if you'd allow an offline email exchange at some point for more details my wife and I would welcome it. If not this thread is a great resource! Thank you.)

[Vitruviusman in reply to Hindemith]

there is a sicilian doctor in Sarasota Florida that is excellent, same price for procedure. My friend had it done 2 years ago and has full erections. cancer free

[Vitruviusman]

What is hifu treatment?

[Hindemith in reply to Vitruviusman]

webmd.com/prostate-cancer/p...

[Londear1992 in reply to Hindemith]

This is a publication done by Dr Thüroff with his partner, Dr Chaussy - just realized I can't upload a PDF on here. If you send me your email address, Hindemith, I will email it to you. (You can private message me your email address to me on my facebook page - Brenda Nasberg Jepson.) Page 23 explains how HIFU can create an automatic immune response to help eliminate cancer cells that may have migrated out of the prostate area before the HIFU - if true a very wonderful side effect from the treatment. When we asked Dr Thüroff how this works, he explained it well and said he is convinced it can happen since he has patients who, by all textbook guidelines, should be dead, but have survived to this day. This is the pdf I can send but I don not think it will load on this page. ThüroffChaussy-paper-int.med.rev.442-1551-1-PB-1.pdf

[Hindemith in reply to Londear1992]

Thanks once again, Londear. Alas, I'm not one of the People of the Book! But here's an email address I use if you have a moment and would be so kind. I'd love to read that paper.

[e-mail]

A thousand thanks.