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HIFU results?

User
Posted 15 Apr 2016 at 19:25

I just got my biopsy results, and my doctor is recommending RP, but I'd like to look into other options.  HIFU sounds good, but I hear different stories about side effects.  Has anyone out there had this procedure?  What have the side effects been?

User
Posted 16 Apr 2016 at 02:55

Hi Michel,

Welcome to this forum though sorry it is because you have been diagnosed with PCa.

I see you are from the USA where HIFU, as in the UK is relatively new and here is considered experimental. The experience of HIFU here is largely as a salvage treatment and although you don't say, the fact that you have been offered an RP as an alternative seems to suggest you may be considering it as a primary treatment.

I had HIFU last July as salvage treatment following the failed RT I had in 2008. I was lucky, my regrown tumour was small so after HIFU there was little debris to expel and no blockages very easy procedure under anesthetic which enabled me to leave hospital shortly thereafter. Before the HIFU I had a high quality MRI and a transperineal biopsy. Can't say I had any side effects other than urinating more frequently for a couple of weeks. However, I already had ED prior to the HIFU due to the previous RT so can't say whether HIFU would have affected it if this had been my primary treatment.

There is a very good site that was started by an Australian guy Terry Hebert who sadly died a few months ago but his work for PCa patients lives on. It has become an International site. It includes treatment categorized by types which include HIFU with patient stories and mentors. The site is called YANA (You Are Not Alone now) and I think you will find some of the stories interesting.

Barry
User
Posted 20 Apr 2016 at 15:15

Thank you so much - I'll check it out.  Good luck to you!

User
Posted 20 Apr 2016 at 16:45

Hey, Butch.
We looked into HIFU before I decided on surgery.
My lump was a combination of too high grade (4 + 3), too near the edge (HIFU needs a margin of healthy prostate tissue all around it), and there was a suspicion of changes in other bits of my gland when the HIFU guy got my MRI scan re-reported by the radiologists he works with (they like it for a discreet lump for first-line treatment). I am sure none of these would be an absolute contraindication to trying it first.
The consultant said it seemed my condition was not a good candidate for it, and he recommended that I have radical treatment.
I wish it had been an option for me, as it promised a lower probability of side effects, and it is such an attractive idea to zap just the diseased bit, especially when I found mine on PSA testing and had no symptoms prior to surgery.
I hope you can have it!
Good luck.
Henry

User
Posted 20 Apr 2016 at 19:15

Thanks Man with PC - YANA site is excellent.

dl

 
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