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Focal HIFU results. Great news!

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Prostate Cancer
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Posted 8/21/2017 7:14 PM (GMT 0)
Received Focal HIFU from Dr Hashim Ahmed from Imperial college hospital in London on May 5.

Going in my PSA had climbed to 4.8 and biopsy revealed a Gleason 7(3+4) on the left side and a Gleason 6 on the right side.

The plan was to ablate the Gleason 7 (3+4) and leave the G6 alone. I was told the procedure had little risk of side effects to continence and erection but was advised that the region of the G7 would include destroying at least one seminal vesicle and maybe both.

Post procedure have had no issue with continence at all and urine flow and bladder retention is the same as pre procedure. I have healthy flow and sleep 7 hours a night.

No issue with erection. I even had some morning wood while I still had the catheter in and man that was painful and scary.

I do have less semen when ejaculating and it feels funny but I'm getting used to it.

Just had 3 month follow up. DRE was normal and PSA was down to 1.98!

I will continue with active surveillance with a PsA check every 3 months for at least 1 year and then evaluate after that. Also will continue with changes to exercise and nutrition to reduce risk of recurrence a little.

Thank you to everyone on this board for your ideas and support.

PS. It was very expensive and not covered by insurance.

56 years old

Post Edited (bdubs60647) : 8/21/2017 1:20:21 PM (GMT-6)

Posted 8/21/2017 7:30 PM (GMT 0)
That is great news. I'm in the north suburbs of Chicago. I believe (based on your screen name) you live in the Chicago area.

I'm interested in how you ended up choosing that type of treatment.
Posted 8/21/2017 10:40 PM (GMT 0)
Congrats, bdubs.

Wonder if you can advise how you were diagnosed. I have an expat younger brother who has lived in London for over 30 years and he tells me screening is not the norm in the UK and he had to push to be screened.
Posted 8/22/2017 4:07 AM (GMT 0)
I live in Chicago. I had no symptoms but was screened by GP without asking. That result was a PSA of 4.3. That began a journey that included two biopsies and an MRI before any disease could be located.

I don't know that I would have chosen to be screened. I'm not one of those men living with great gratitude for the screen. But once I had the results it seemed prudent to treat and I chose the most low impact way I could. I'll live with this as a chronic disease that requires ongoing surveillance and management.

All the best.
Posted 8/22/2017 10:18 PM (GMT 0)
bdubs: Sounds like great results. I am curious as to why you left the G6 since you were already having the procedure? Your SE's sound very similar to RT guys. You had the advantage of having way less of an invasive procedure. Here's to many more low PSA readings and please keep us posted.
Posted 8/23/2017 3:42 AM (GMT 0)
i read a lot of material and spoke to doctors and was just personally more comfortable with the focal ultrasound vs RT.

As far as the G6, treating physician said it was not necessary to treat a G6 lesion and I preferred to keep as much natural working gland as possible. it was consistent with my plan of treating this as a chronic disease. I wanted to get as little treatment as possible and monitor it.
Posted 12/7/2017 2:10 AM (GMT 0)
Just had my 6 month PSA. 1.90 very grateful.
Posted 12/7/2017 5:24 AM (GMT 0)
Since, as you said, you are treating it as a chronic disease and monitoring - essentially active surveillance, are you following an active surveillance protocol? That is, will there be a confirmatory biopsy (mpMRI-targeted) within a year and periodic follow-up biopsies? Is there a trigger PSA? Do you have a local Uro that you're working with on the active surveillance?
Posted 3/9/2018 10:47 AM (GMT 0)
Just had 9 month PSA, down to 1.6

Very grateful for the results.

Tall Allen, Sorry I missed that post. No the follow up does not include biopsies. Even it were suggested, I had two biopsies prior to the procedure and will try to avoid any more. I had terrible experiences. The follow up plan I was given was PSA every 3 months for 1 year and DRE at the end of the year. There were no set thresholds or strategies for response, it was more of monitor and determine best available next action if needed.
Posted 3/9/2018 12:10 PM (GMT 0)
Please be aware that the recurrence rate for HIFU is above 30% in general.

The rule is that a biopsy is required one year after the HIFU operation. So from the cited article:

Muller said...
A systematic 12-core TRUS biopsy combined with 4–6 targeted biopsy cores of the treated area and any suspicious lesion(s) should be performed after 1 year, and thereafter only when there is suspicion on imaging. The ideal way to perform targeted biopsies is to use TRUS–MRI fusion technology.


You could try to have an MRI instead, but the biopsy in detecting smaller lesions. Better yet is a (too expensive) PSMA PET/CT.

George
Posted 3/9/2018 1:17 PM (GMT 0)
George, is that article referring to HIFU or Focal Hifu. They are different procedures.
Posted 3/9/2018 2:07 PM (GMT 0)
If you click on the link you can read the full text. It refers to focal therapy.
Posted 3/9/2018 5:01 PM (GMT 0)
bdubs- Happy to hear your PSA is steadily moving down.
Posted 3/9/2018 6:44 PM (GMT 0)
I am also happy that bdubs' PSA goes down and really hope it will continue to do so. I just wanted to point out that PSA and DRE are unsufficient to properly follow up on a focal therapy. If money is no concern, he could have a PSMA PETMR instead of a biopsy at e.g. UCSF to monitor the tumor.

George
Posted 3/10/2018 2:15 AM (GMT 0)
Thank you for the informed advice and kind words.
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