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HIFU experience

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User
Posted 06 Feb 2024 at 15:21

Hi all,


I was recently diagnosed with prostate cancer Gleason 3+4, PSA 4.6. Age 64, fit and otherwise healthy.


I would be interested in hearing about anyone’s experience of HIFU. I have spoken with surgery and radiotherapy teams and I am trying to decide between surgery or hemiablation HIFU.


 


 

User
Posted 07 Feb 2024 at 12:57

after PSA 5, aged 69 was diagnosis in January 2020 with Gleason 7 (3+4 only 10%) on one side only after MRI and guided biopsy opted for AS - when 18 later my PSA rose from a steady 5  to 8 had HIFU as an option worth trying - The process a day case, was easy and with almost no after effects post a week or two of some blood in urine and a catheter.


In my case unfortunately the PSA went down but then back up in only 6 months and subsequent MRI and Biopsy showed regrowth on the edge of the HIFU treatment area of G7 (3+4) but unfortunately the other side which had been targeted biopsied twice with negative cores, now had Gleason 9 (4+5). subsequent radiotherapy and HT.


I think HIFU is an option but needs to be absolutely sure not multifocal in nature. I think with patten 4 you might want to see exactlyt how many areas there are, if only one side and where and discuss this. I was unusual and unlucky, as most medics said, so worth considering but remember Pca is can and is often multifocal. just my take and for me with other health conditions it was worth a shot. 

User
Posted 06 Feb 2024 at 15:21

Hi all,


I was recently diagnosed with prostate cancer Gleason 3+4, PSA 4.6. Age 64, fit and otherwise healthy.


I would be interested in hearing about anyone’s experience of HIFU. I have spoken with surgery and radiotherapy teams and I am trying to decide between surgery or hemiablation HIFU.


 


 

User
Posted 08 Feb 2024 at 11:05
Mo,
It’s early days for me as I only had hemiablation HIFU just under 3 months ago (you can read my posts) so I don’t know yet how successful it has been. For me it was a day’s surgery with the only after affects being the use of a catheter for a week but no other impact.
The surgeon was quite clear of the risks of possible further treatment down line in a few years time. My brother has had a prostatectomy which was unsuccessful resulting in radiotherapy etc and incontinence/ED. My old mate from the military had an identical story. For me it seemed that I would rather take the risk now of HIFU with minimal side effects and if necessary go down alternate paths in a few years, instead of having treatment now with it’s guaranteed disruption to my way of life and the possibilities of it not working anyway! It’s a risk we all have to weigh up but it made sense to me to go for HIFU. Time (and the pesky cancer itself) will tell if I was correct but at least I have a few more years now when I am still active and having fun!
Good luck with your choices!

Simon
User
Posted 27 Feb 2024 at 09:12

Hi Bill2,


Thanks for your message. Here are my PSA results quarterly to January 2024 - 8.0, 8.5, 11, 12.8. My PSA post Hifu in 2017 was 3.6 and it has increased steadily since, however so has the volume of the prostate which has grown from 65 to 80cc - an increase of 25% since 2017. This will be my first biopsy since HiFu, but I have had regular scans in between and the imaging has not indicated any specific concern. It wouldn’t surprise me if this biopsy indicates cancer. It’s been seven years and it was explained by my HiFu consultant that this could happen in the 5-10 year timescale. 

User
Posted 08 Feb 2024 at 16:35

Thanks Simon. It’s a tough call, but I have three areas detected I’m the left lobe. One of which is anterior which made me an unsuitable candidate for Nanoknife, so I am thinking HIFU might not be best suited either. 


The problem is, I have heard good and bad stories of both RALP and HIFU. 

User
Posted 24 Feb 2024 at 11:42

Bit late to join the conversation, but…. I was diagnosed with early stage prostate cancer in December 2016 at age 59. My consultant recommended RALP on the basis that I would live worry free after the op. He rather skipped over the potential side effects. I did a lot of research and decided to go with HIFU and had the treatment in May 2017. Since then I have monitored my PSA levels every 3 months. They were stable till November 2023, when they started to rise. I was quickly called in for an MRI. Imaging did not show any specific areas of concern, but because of the rise in PSA the consultant has recommended a guided biopsy which is scheduled for mid- March. My experience with HIFU has been very positive and that’s because I have an excellent NHS team keeping an eye on me with regular check-ins. It’s seven years since I was treated and if the cancer is organising again then I still have options. I have a very positive outlook and between PSA tests I don’t tend to think about the possibilities so I am comfortable with the choice I made. Knowing I have a professional and responsive team backing me up is a huge plus. 

User
Posted 04 Mar 2024 at 16:26

Hi Aleeyaa


Just seen your reply, thanks. Yes these steep PSA rises your didn’t want even after 6/7 years post Hifu. Let us know the outcome of the biopsy etc.  I, Jonny London and others at a different stage after Hifu will follow your situation. Wish you well.

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User
Posted 07 Feb 2024 at 12:57

after PSA 5, aged 69 was diagnosis in January 2020 with Gleason 7 (3+4 only 10%) on one side only after MRI and guided biopsy opted for AS - when 18 later my PSA rose from a steady 5  to 8 had HIFU as an option worth trying - The process a day case, was easy and with almost no after effects post a week or two of some blood in urine and a catheter.


In my case unfortunately the PSA went down but then back up in only 6 months and subsequent MRI and Biopsy showed regrowth on the edge of the HIFU treatment area of G7 (3+4) but unfortunately the other side which had been targeted biopsied twice with negative cores, now had Gleason 9 (4+5). subsequent radiotherapy and HT.


I think HIFU is an option but needs to be absolutely sure not multifocal in nature. I think with patten 4 you might want to see exactlyt how many areas there are, if only one side and where and discuss this. I was unusual and unlucky, as most medics said, so worth considering but remember Pca is can and is often multifocal. just my take and for me with other health conditions it was worth a shot. 

User
Posted 07 Feb 2024 at 17:47

Thanks Nomis.


I think I will be going for RALP. HIFU is just too much of a gamble for me.

User
Posted 08 Feb 2024 at 11:05
Mo,
It’s early days for me as I only had hemiablation HIFU just under 3 months ago (you can read my posts) so I don’t know yet how successful it has been. For me it was a day’s surgery with the only after affects being the use of a catheter for a week but no other impact.
The surgeon was quite clear of the risks of possible further treatment down line in a few years time. My brother has had a prostatectomy which was unsuccessful resulting in radiotherapy etc and incontinence/ED. My old mate from the military had an identical story. For me it seemed that I would rather take the risk now of HIFU with minimal side effects and if necessary go down alternate paths in a few years, instead of having treatment now with it’s guaranteed disruption to my way of life and the possibilities of it not working anyway! It’s a risk we all have to weigh up but it made sense to me to go for HIFU. Time (and the pesky cancer itself) will tell if I was correct but at least I have a few more years now when I am still active and having fun!
Good luck with your choices!

Simon
User
Posted 08 Feb 2024 at 16:35

Thanks Simon. It’s a tough call, but I have three areas detected I’m the left lobe. One of which is anterior which made me an unsuitable candidate for Nanoknife, so I am thinking HIFU might not be best suited either. 


The problem is, I have heard good and bad stories of both RALP and HIFU. 

User
Posted 08 Feb 2024 at 22:15

Yes, tough call - I know I’m not typical but I think had I researched a little more I might have gone straight to radiotherapy given mine was not just one spot - even though at the time it was only supposed to be one side. 


RALP was never an option for me given my disabilities and age. Radiotherapy was pretty easy for me to be honest - just tiring but few side effects- I’m on 18-24 months hormone therapy which is the tough bit but with G7 and maybe hypo fractions RT probably 6 months would have been ok - RALP avoids the hormones usually but more side effects often - so many choices! Urologist often say RALP whereas oncologist often bias to radiotherapy- seems similar long term outcome …. Good luck ! 

User
Posted 24 Feb 2024 at 11:42

Bit late to join the conversation, but…. I was diagnosed with early stage prostate cancer in December 2016 at age 59. My consultant recommended RALP on the basis that I would live worry free after the op. He rather skipped over the potential side effects. I did a lot of research and decided to go with HIFU and had the treatment in May 2017. Since then I have monitored my PSA levels every 3 months. They were stable till November 2023, when they started to rise. I was quickly called in for an MRI. Imaging did not show any specific areas of concern, but because of the rise in PSA the consultant has recommended a guided biopsy which is scheduled for mid- March. My experience with HIFU has been very positive and that’s because I have an excellent NHS team keeping an eye on me with regular check-ins. It’s seven years since I was treated and if the cancer is organising again then I still have options. I have a very positive outlook and between PSA tests I don’t tend to think about the possibilities so I am comfortable with the choice I made. Knowing I have a professional and responsive team backing me up is a huge plus. 

User
Posted 24 Feb 2024 at 14:27
Hi Aleeyaa
Thank you for posting, welcome.
You do not say how much your PSA went up 3months ago and was it just one result. It must have been a steep rise for them to do a biopsy so soon.My interest is that I am 3 years post HIFU with no significant rise in PSA. I show my results in my bio for others to see.
I hope your biopsy results are good. Keep us posted. I too am positive about HIFU. Compared to my brother’s RT& HT side effects it’s been a doddle.
User
Posted 26 Feb 2024 at 15:57
I just had HIFU 3 weeks ago (one 9mm lesion but spanning left and right, Gleason 4+3, PSA 5.84). I chose this option primarily because I'm fairly youngish at 56, fit & healthy and also for the potential lessor side effects.

The procedure was pretty straight forward, stayed overnight at the hospital and then had 8 days at home with the catheter in.

Three weeks down the track it's so far so good, no pain, minor swelling, no incontinence and working as before down below...urination and erections normal ...although there's been blood in my semen.

Though the proof if it's worked will be in 3 months time. Good luck with whatever treatment you choose.
User
Posted 26 Feb 2024 at 16:31
That's most interesting, Jonny. I am a Gleason 4+3 also with an 8mm lesion on the lower left peripheral base. Last PSA a couple of weeks ago 2.60. Did you have a PSMA Pet Scan - either CT or MRI. That was telling for me as - only then - did they find I had a very small amount of 3+3 in the right transition zone. If I had gone for HIFU I fear it would have been to my cost. I am older than you, however, I am 68.
User
Posted 27 Feb 2024 at 09:12

Hi Bill2,


Thanks for your message. Here are my PSA results quarterly to January 2024 - 8.0, 8.5, 11, 12.8. My PSA post Hifu in 2017 was 3.6 and it has increased steadily since, however so has the volume of the prostate which has grown from 65 to 80cc - an increase of 25% since 2017. This will be my first biopsy since HiFu, but I have had regular scans in between and the imaging has not indicated any specific concern. It wouldn’t surprise me if this biopsy indicates cancer. It’s been seven years and it was explained by my HiFu consultant that this could happen in the 5-10 year timescale. 

User
Posted 04 Mar 2024 at 15:17

Yes Meunier I had the MRI

Edited by member 04 Mar 2024 at 15:18  | Reason: Not specified

User
Posted 04 Mar 2024 at 16:26

Hi Aleeyaa


Just seen your reply, thanks. Yes these steep PSA rises your didn’t want even after 6/7 years post Hifu. Let us know the outcome of the biopsy etc.  I, Jonny London and others at a different stage after Hifu will follow your situation. Wish you well.

 
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