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Prostate Cancer Network
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HIFU

My doctor said that HIFU is a possible treatment for my low-grade cancer, Gleason 6 but I need a special kind of biopsy and MRI which gives a clearer images of targeted areas. I found this promising alternative to robotic prostatectomy. I am very curious to hear anyone’s experience on HIFU.

Also, I want to say thank you for this space. I feel so much gratitude for the support I have received in this group. Thank you.

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Read this and tell me what you think:

pcnrv.blogspot.com/2016/12/...

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Gpinkk,

If you go to yananow.org/query_stories.php you'll see a search form that allows you to search for patient reports of their treatment experience for various treatments, gleason scores, etc.

I left all of the search parameters alone (i.e., all PSA values, all Gleason scores, etc.) and selected "Category of Therapy Chosen" = "HIFU", "All types of HIFU". 17 stories appeared.

These are NOT scientific reports. The patients writing them may have only a limited understanding of what happened to them. There is no random selection here and we have no reason to think that the results here are representative of the majority of HIFU patients. I think that in fact there is some reason to think they are not representative. In addition, many of the writers suffer from the "I did the best thing" syndrome that so many of us suffer from. We don't like to think that if we had made other choices we might have done better so we adamantly insist that we did the right thing. However, keeping these limitations in mind, some of the stories will tell you something about what it's like to undergo HIFU, what anaethesia is required, what the follow-up recovery is like, and so on.

I have no personal experience of HIFU, and very little medical expertise, however I read Tall_Allen's analysis in the blog post he cited and found it very worth reading. I would read it carefully.

Best of luck.

Alan

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"I did the best thing" syndrome--I like that. I imagine that's a corollary of confirmation bias. Yeah, I certainly HOPE I did the right thing. Ask me again in 30 years. ;-)

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"...the best thing" syndrome is a fitting description for Cognitive Dissonance (see the social psychologist Leon Festinger's work). It is also known as Buyer's Remorse. I would think that process applies to a great deal of self-assessment that is presented here. That is why hard data and all forms of objective evidence to support self-reports is so important. Thank you for your post Alan.

CalBear74

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Do they have a phone number, because the disclaimer you have to check off is below the screen cut-off , immobile and can't be accessed. I'v experienced this on company assist chats... always a frustration. As I say, the background can scroll but is not accessible without access to the disclaimer button : ( yananow.org/query_stories.php )

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I couldn't find a phone number on the site. I believe they have no office, the site is just maintained by volunteers working from home. However I did find an email address: yananow@yananow.org

If you're using a device with a small screen, like a phone, and if you have a computer with a full size screen, try that.

It may also be possible to change make the screen image smaller. In most web browsers that's done by typing Ctl- (smaller) Ctl+ (larger) or Ctl0 (original/default size) On Android devices you can usually do the same thing by putting two fingers on the screen and moving them towards each other to make the screen image smaller. Maybe you can get the disclaimer button onto the screen that way.

Alan

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thank you for reply...

I did the search on a large desk top. I don't HAVE a smart phone, like most of the world seems to have. also, I Did try reducing the size ... nada. The total page just went smaller but still made the SEND button inaccessible

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I guess the only thing left I know to try is to switch to another browser. I normally use Firefox on my Linux system but have occasionally run into a problem with a web page and found that that Chrome worked better (or sometimes vice versa). On Windows there's also Microsoft's Internet Explorer and Edge. If you're using an old computer with an old browser, you may be able to download a later browser version, if not of the browser you're using, then of one of the others.

Not much help I guess, but I've run out of ideas.

Good luck.

Alan

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"not much help?" On the contrary ... far more than I had BEFORE you shared your information. Thanks

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I have had HIFU At professor Emberton clinic Given by a beautiful lady surgeon, It worked for a while ,and probably bought me time, I had previously been given Radiotherapy so it was Salvage HIFU. But I am still here at 78 so I do not complain,

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Thank you...I have some other questions: How long did HIFU work after its first treatment? What do you mean by ‘it worked for a while’? Based on which tests, do you know its no longer working. What has your PSA been before and after HIFU?

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HI Gpinkk PSA went from 15 to 4 And it lasted for 1year then it crept up.Pet scan revealed tumour not accesable for HIFU,So my recent PSA went up to 33 after a bout of Prosatatis and Casidex brought it down to 4.So no chance of a cure I think,but I have been unlucky to have Radiotherapy and HUFU fail

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Did you have a test to see the aggresivity of the cancer? What is your Gleason score?

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yes but that was Ten years ago I think it was 7,But now on oncology treatment ,at Royal Marsden,I did try to Get RP after RT failed but possible side effects too great.

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Perhaps you had to combine a change in diet WITH the HIFU in order to maintain cancer-free status

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Diet was never discussed,and the treatment lasted for one year then my PSA started rising Pet scan revealed that a tumour had moved to a inacessable place.

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I thought it might need to be joined with diet change and certain supplements.

What do YOU mean by, "worked for a while"... recurrence, I suppose, but in whaT TIME? tHANK YOU FOR SUBMITTING

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I think anything other than RP would be a better choice. RP seems like the Emperor's new clothes to me.

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Interesting...Can you elaborate?

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Just my opinion based on the number of people with RP's that need follow up treatment. If all of your cancer is not inside the cut line many of you will be back. Radiation and cryosurgery seem to spill over a line and pick up the undetectable cells.

Some RP's are followed up by a short term period of radiation but leaving the credit in doubt creates professional jealousy IMO.

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There's plenty of data out there; if a surgeon or a radiation oncologist had an opinion I'd listen. I don't think my opinion is worth a damn.

Most of the studies I've seen show similar long-term results for surgery vs. radiotherapy for localized disease. I would bet there is far more variation among surgeons and among radiation oncologists than there is between the two treatment modalities.

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Thank you...I have a low grade situation which is confined to the gland so I’m considering HIFU as an alternative to RP.

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My husband was diagnosed with prostate cancer earlier this year, I thought HIFU seemed like the best option but it was his choice and he chose da vinci robotic prostatectomy and I think he made the right choice because his cancer was aggressive

Your cancer seems less aggressive so HIFU is a great choice in my opinion

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Gleason 8 here. After having had TURP surgery for enlarged prostate 10 years before Dx I was told that RP wasn't advisable and was steered toward external beam radiation. I chose HIFU instead. The quality of life claims were true -- no problems. I was undetectable for a year and a half but PSA is now creeping up -- 0.3 was last reading. I've been off ADT since the surgery. I'll get another PSA reading next month, fingers crossed. I'll be age 69 in a couple of months.

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Make that PSA the new, more accurate, PSO Iso test... perfected at the Cleveland facility. Why continue to believe in a PSA test that the invented, himself, said was useless, after all?

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sorry... That's PSA Iso test

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Had my HIFU in July. Gleason 7,PSA 8. You can follow me and see my posts...but in short...there are pros and cons. The ED is there but not horrendous, the psa dropped to 2, and the urinary catheter had to stay in for 6 weeks. Chose HIFU to buy myself time since I'm only 50 and RP seems barbaric. Have to go back for follow up mri to see if cancer is there or has spread in next week or so...fingers crossed.

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WOW ... I also just came across HIFU. My prayers are with you as they are for me. I have to investigate, but it beats the idea of a prostate, radiation fry.

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