Looking for Hifu results

User

Posted 01 May 2022 at 21:45

Goes anyone have experience of hifu side effects and results ?

User

Posted 02 May 2022 at 12:46

Chris, I seem to remember a thread where someone had it within the last year, and it hasn't recurred yet. More importantly this forum is very much skewed towards problems cases so we have a very unfavourably biased view. There are 40,000 diagnosis a year and this forum probably gains about 200 followers per year. I'm not saying 39800 are problem free but they aren't making a big fuss (may be they die straightaway and things are worse than I thought).

I think as long as anyone having this knows it is unproven they can make an informed decision.

Dave

User

Posted 02 May 2022 at 19:33

David,

I think you and also Chris would do well to follow this lecture by the widely acknowledged top man on Focal Therapy with particular reference to HIFU. https://grandroundsinurology.com/focal-therapy-hifu-functional-and-oncological-outcomes/

Patients have to be carefully selected for HIFU and experience and advances in the treatment have led to better outcomes. Patients are now being treated with more intermediate and occasionally even higher Gleason scores. It does sometimes need to be repeated but side effects are much less severe than with RT or RP. (I have had it it done twice for failed RT and after a week with the catheter out, it was then as if I had not had HIFU. I cannot comment on the erection aspect because after RT I came to lose erections back in 2008). My PSA after my last HIFU was 0.02 and that compares with the previous lowest of 0.05 after RT.

There are failures with every form of treatment and the average for RP is about a third. HIFU is becoming increasingly successful but in need can be repeated or followed by RT or RP as appropriate. So for suitable men is worth consideration.

PS: Another link https://grandroundsinurology.com/cancer-control-in-1379-men-undergoing-hifu-a-multi-institute-15-year-experience/

Edited by member 03 May 2022 at 02:04 | Reason: to highlight link and add another link

Barry

User

Posted 03 May 2022 at 17:42

Just a quickie as you have had a number of balanced replies on the pro & cons of HIFU. MY HIFU was done 20 months ago and I have had little to no side effects. Nothing Compared to my brother who also was Gleason 7 and went for HT/RT.

My PSA after HIFU was 2 but now down to below 1.

Show Most Thanked Posts

User

Posted 02 May 2022 at 08:07

HIFU is best regarded as a "holding measure" for those with low-grade small tumours who might otherwise opt for active surveillance. It's not a curative treatment and generally needs doing again after a few years.

Cheers,

Chris

User

Posted 02 May 2022 at 12:06

It is intended to be a curative treatment, but as Chris says recurrence is common. As it has very few side effects and can be repeated, and sometimes does completely cure the cancer it is still worth considering. It is only suitable for a few people depending on the position of the tumour so it may be ruled out.

Dave

User

Posted 02 May 2022 at 12:19

I think everyone who I've read having it done here, Dave, has experienced a recurrence. It may be done with curative intent, but its rates of long-term success seem very poor if that is indeed the intent.

As a way of putting off radical treatment with G6 cancer it seems to be effective, though. As I understand it, it is generally only used in cases of small G6 tumours.

Cheers,

Chris

Edited by member 02 May 2022 at 12:24 | Reason: Not specified

User

Posted 02 May 2022 at 12:46

I think as long as anyone having this knows it is unproven they can make an informed decision.

Dave

User

Posted 02 May 2022 at 19:33

David,

PS: Another link https://grandroundsinurology.com/cancer-control-in-1379-men-undergoing-hifu-a-multi-institute-15-year-experience/

Edited by member 03 May 2022 at 02:04 | Reason: to highlight link and add another link

Barry

User

Posted 03 May 2022 at 17:42

My PSA after HIFU was 2 but now down to below 1.

User

Posted 11 May 2022 at 18:51

Thanks for the links Barry, interesting articles. In my previous post I said recurrence is common; I'll retract that. As you and the videos point out if you select patients who are well suited to this treatment it has very favourable outcomes, and improved imaging is making it easier to select those patients.

Dave

User

Posted 17 May 2022 at 12:28

Barry, when you say that there are "failures with every form of treatment and the average for RP is about a third", what sort of failures happen with RP?

User

Posted 17 May 2022 at 13:01

The cancer recurs, typically from cancer cells that escape into the prostate bed. About one in three men who has an RP goes on to require salvage radiotherapy.

Best wishes,

Chris

User

Posted 17 May 2022 at 15:29

Further to Chris's response - it may be that some cells are left behind in the prostate bed during the op, or microscopic spread has already occurred but is too tiny to show itself until some years later or the initial staging was incorrect and there was either more cancer than expected or it was already escaping the gland. My husband was diagnosed with a tiny T1a - so small it didn't even show on the scan. When they operated, it was discovered to be a T3, in every section of his prostate and already spread to the bladder neck. Recurrence and salvage RT a couple of years later wasn't a shock! In my dad's case, recurrence wasn't until 13 years post-op and his PSA is climbing very slowly so it is apparent that just a little bit of cancer was left in the prostate bed.

Edited by member 17 May 2022 at 15:30 | Reason: Not specified

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 17 May 2022 at 17:22

It seems your husband did well to have his treatment when he did Lyn. It makes an arguement for early treatment after diagnosis. Where it's determined from prostates examined after removed that it differs from prior diagnosis in situ, it is far more often upgraded afterwards than downgraded, something to bear in mind. Wouldn't it be great if the whereabouts of any microscopic cancer cells could be traced and before treatment. Perhaps some time in the future.......

Good you are back with us after your break but I remember what it was like coming back to a pile of work!

Edited by member 17 May 2022 at 20:03 | Reason: Not specified

Barry

User

Posted 17 May 2022 at 19:01

The reason RT was recommended for me is that at a value of 31 my PSA was considered to be anomalously high for the cancer that the biopsy found, so the oncologist was concerned about undetectable spread outside the prostate. Hence I had “wide beam” RT to irradiate the entire pelvic region and hopefully zap any such spread.

Chris

User

Posted 17 May 2022 at 19:43

"Wouldn't it be great if the whereabouts of any microscopic cancer cells could be traced and before treatment. Perhaps some time in the future......."

Yes but on the other hand, I suspect that many fewer men would be offered curative treatment

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 May 2022 at 00:36

The thing is, Bill - some people have no symptoms even with advanced / metastatic prostate cancer, others realise once they are diagnosed with an early stage cancer that they had been experiencing symptoms for some time but not put 2 and 2 together. Some men are diagnosed with bone mets and a PSA of 5 or less, others have had a PSA of 80 and were given the all clear. At the minute, you are torturing yourself with guesswork and there is nothing (not PSA or ED or dry orgasm or lack of pain) that can predict what your results will be. You haven't mentioned whether you have had an mpMRI and, if so, what score you were given? If you haven't yet had MRI or bone scans, they won't be able to give you a full diagnosis on Thursday.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 18 May 2022 at 05:48

I had no symptoms whatsoever, Bill. I went to see my GP for something entirely unrelated and he just happened to say "I see you've over 55 , so I think we'll do a PSA test". The next day I got the dreaded "I need to see you urgently" phone call. His decision to do the test probably saved my life.

Best wishes,

Chris

User

Posted 20 May 2022 at 15:11

In the UK they generally wait for about 6 or thereabouts weeks after biopsy before MRI is done to allow for healing and in order to provide a better image.

Barry

User

Posted 20 May 2022 at 15:58

Originally Posted by: Online Community Member

In the UK they generally wait for about 6 or thereabouts weeks after biopsy before MRI is done to allow for healing and in order to provide a better image.

Starting in 2018, UK has done mpMRI before biopsy, so the biopsy can be guided to the most suspicious areas. It also allows many men to be cleared by the scan without needing a biopsy at all. This was all part of the outcome of the PROMIS trial.

User

Posted 20 May 2022 at 17:49

I was PSA 58, no symptoms. Turned out to be T3aN0M0.

Finished treatment now, although probably won't be until end of this year at the earliest before I know how successful it was. Of course, it can come back anytime, and I was high risk.

User

Posted 20 May 2022 at 18:21

Quote:

Andy62;26808

It also allows many men to be cleared by the scan without needing a biopsy at all. This was all part of the outcome of the PROMIS trial.

This is the bit that worries me most. If a man has a PSA of concern, indicative DRE or symptoms that led him to being referred to urology, he should be offered a biopsy even if the San is clear. Not all prostate cancer shows up on scans.

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

Notification

Join the online community now.