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HIFU anyone ?

User
Posted 31 Dec 2018 at 16:16

Hi there folks,

i’ve just been diagnosed with PC, Gleasons grade 3+4  grade 2, midline apex E and midline base F

i’m 61 with an elder brother who had a more agressive PC last year at 67 and had a RALP which was sucessful. Given that history I don’t think I can swerve a radical prostatectomy but for family reasons would rather delay for 12 months. If I went onto active surveillance does anyone know if this would involve more biopsy’s ?

i’ve been reading about HIFU which is currently only available on clinical trial, does anyone have experience of this treatment, what i read suggests that radical surgery is possible after HIFU unlike some of the other treatments.

Any comments appreciated, can’t say I’m pleased to join the club, but there is a lot of advice and help on this site !

Thanks

User
Posted 31 Dec 2018 at 22:40

Fred, if you check my bio (click on the icon) you will see my diagnosis was not that different to yours, and I had to eventually decide between HIFU and robotic surgery. 

Some people say that surgeons tend to advise surgery, and radiologists tend to advise radiotherapy, which I suppose is human nature, because each is more comfortable with their own specialist area of medicine.

Happy to expand on my experience if it helps

Rob 

Edited by member 01 Jan 2019 at 11:00  | Reason: for clarity

User
Posted 01 Jan 2019 at 11:11

My misgivings for HIFU is that Prostate cancer is more often than not a multifocal disease in that there will be more than one or two areas of cancer within the prostate. The biopsy will probably miss tiny areas and the MRI however good cannot possibly show microscopic areas that have not progressed to visible tumour yet. 

As focal therapy in prostate cancer is monotherapy where the aim is to destroy the visible tumour there is always the risk of microscopic tumours being left behind to continue growing.

My husband's mp MRI showed 2 lesions in his Prostate but when he had it removed the histopathology showed there was moderate patchy involvement. Had they just treated the 2 areas of concern he would still have a cancerous prostate.

Everyone has to make their own decision though and hope for the best.

Best Wishes

Ann

P.S  

We found a great book to read which covers everything Prostate Cancer related especially when having to make treatment decisions is Dr Patrick Walsh's " Guide to surviving Prostate Cancer". ( 4th edition) He is a world renowned American urologist who first developed nerve sparing prostatectomies.

 

Edited by member 01 Jan 2019 at 11:14  | Reason: Not specified

User
Posted 01 Jan 2019 at 12:03

That is a fair point Ann but in need HIFU can be repeated or followed by Prostatectomy, or RT whereas with Radiotherapy tumours can regrow but treating them with further RT is problematical. Also, some tumours that remain after HIFU or RT may never cause a problem. This is known because it has been found that many men die with tumours, rather than because of them, some men not even knowing they had them. It has been established that many men are over treated by having indolent tumours treated with RT or Prostatectomy, and some leading urologists specializing in Focal therapies consider less damaging HIFU (there are also other Focal Therapies) to be a good option for some men rather than Prostatectomy or Radiation.

There is a very interesting discussion with the leading expert on Focal therapy in this radio programme.  The introductions are unnecessarily long but Prof M E's views are worth listening to. https://www.curetalks.com/event/rsvp/HIFU-Focal-Therapy-for-Prostate-Cancer/134/

 

Edited by member 01 Jan 2019 at 12:29  | Reason: Not specified

Barry
User
Posted 01 Jan 2019 at 21:42

Had the MDT not seriously advised that in my case they believed it would not be possible to remove all my cancer by Prostatectomy, I would have opted for surgery, (It was beyond Focal treatment too). This left Radiotherapy which can cover a more extensive area and 10+ years after RT, a 68 Gallium PSMA scan and an MRI showed no cancer outside my Prostate, so the RT did a good job in this respect. Unfortunately, as can happen with a Prostate, even a quite extensively radiated one, tumours can regrow. Some of these may need treatment whilst others are not significant and can be left. My first HIFU treatment dealt with the first regrown tumour but a very small tumour has since regrown in another part of my Prostate and consideration is being given to treating this. There could be other as yet small tumours (multifocal) that have not yet been identified. (I urge members to listen to Professor M E who covers this aspect in the link I gave). I could have stopped any further cancer developing within my Prostate by having a late Prostatectomy as there are a few surgeons who will do this tricky op post RT but I was told there would be 100% likelyhood of permanent incontinence apart from other adverse side effects. So I preferred to have HIFU and again in need. HIFU like other treatments should only be given to suitable patients. I could have just relied on HT until I become refractory and suffered the effects of this and possibly other further down the road systemic treatments but much better in my opinion to have repeat HIFU.  How do you think I could have done better Ann?

Should it be decided that the small regrown tumour I now have would benefit from treatment, my first choice would be Focal Laser Ablation (FLA) as it is very precise with less collateral damage than HIFU. This also means it can treat nearer to critical organs. This is what Clare's husband had but unfortunately it is only available abroad and at considerable cost. Even with FLA it is still possible that further tumours may develop over time and there may be a need for further FLA or more aggressive treatment in due course.

Of course, everybody diagnosed with PCa hopes that one primary treatment will be all they will ever require and for some this proves to be the case but for many men regardless of what primary treatment they have, it will need to be backed up by at least one other form of treatment to help them fight this disease.

Incidentally, the same argument against HIFU not treating insignificant tumours can be made for RT where greater precision means only part of the Prostate is radiated. HIFU is claimed to preserve more of the function of the Prostate than surgery or radiation.

Edited by member 01 Jan 2019 at 22:18  | Reason: Not specified

Barry
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User
Posted 31 Dec 2018 at 17:44
A friend is G 3+4=7 and he has been on active surveillance for four years. He has seen expensive consultant urologists all over the world. Two recommended surgery, one radiotherapy, and two active surveillance. He went with the latter. It involves annual MRI scans, consultant appointments, DREs and quarterly PSA tests. You don’t mention your PSA?

If I were you, I would avoid any treatment as long as your consultant(s) thinks you can get away with it. You can always ask for a second opinion.

My mate has had successive PSA rises recently, so he will have to consider radical options when he returns to England in the Summer.

Best of luck.

Cheers, John.

User
Posted 31 Dec 2018 at 18:33
Thanks John, good point 5.2 - pre-biopsy
User
Posted 31 Dec 2018 at 22:40

Fred, if you check my bio (click on the icon) you will see my diagnosis was not that different to yours, and I had to eventually decide between HIFU and robotic surgery. 

Some people say that surgeons tend to advise surgery, and radiologists tend to advise radiotherapy, which I suppose is human nature, because each is more comfortable with their own specialist area of medicine.

Happy to expand on my experience if it helps

Rob 

Edited by member 01 Jan 2019 at 11:00  | Reason: for clarity

User
Posted 01 Jan 2019 at 02:16

HIFU is regarded as an experimental treatment for the reason that long term assessment is lacking. It's use is increasing but it is still only administered in a minority of cases in the UK and of these mostly as a salvage treatment for failed radiotherapy. It can be repeated if necessary and a Prostatectomy can follow if HIFU was given as a primary Treatment, although chances are that HIFU will need to be paid for in such cases. The cancer also has to be where probe can focus and meet other criteria so you would need to see an urologist familiar with Focal therapy to check whether you are a suitable candidate or at least provide your full histology and scans for an opinion. If you are still interested you might find it helpful to read my experience of HIFU, although it was as given as a salvage treatment. https://community.prostatecanceruk.org/posts/t10960-HIFU--my-experience#pos

 

Edited by member 01 Jan 2019 at 02:17  | Reason: Not specified

Barry
User
Posted 01 Jan 2019 at 11:11

My misgivings for HIFU is that Prostate cancer is more often than not a multifocal disease in that there will be more than one or two areas of cancer within the prostate. The biopsy will probably miss tiny areas and the MRI however good cannot possibly show microscopic areas that have not progressed to visible tumour yet. 

As focal therapy in prostate cancer is monotherapy where the aim is to destroy the visible tumour there is always the risk of microscopic tumours being left behind to continue growing.

My husband's mp MRI showed 2 lesions in his Prostate but when he had it removed the histopathology showed there was moderate patchy involvement. Had they just treated the 2 areas of concern he would still have a cancerous prostate.

Everyone has to make their own decision though and hope for the best.

Best Wishes

Ann

P.S  

We found a great book to read which covers everything Prostate Cancer related especially when having to make treatment decisions is Dr Patrick Walsh's " Guide to surviving Prostate Cancer". ( 4th edition) He is a world renowned American urologist who first developed nerve sparing prostatectomies.

 

Edited by member 01 Jan 2019 at 11:14  | Reason: Not specified

User
Posted 01 Jan 2019 at 11:42
What kind of biopsy did you have, Fred, TRUS under a local anaesthetic or template under a general?

Template is much more accurate with more cores sampled.

Cheers, John.

User
Posted 01 Jan 2019 at 12:03

That is a fair point Ann but in need HIFU can be repeated or followed by Prostatectomy, or RT whereas with Radiotherapy tumours can regrow but treating them with further RT is problematical. Also, some tumours that remain after HIFU or RT may never cause a problem. This is known because it has been found that many men die with tumours, rather than because of them, some men not even knowing they had them. It has been established that many men are over treated by having indolent tumours treated with RT or Prostatectomy, and some leading urologists specializing in Focal therapies consider less damaging HIFU (there are also other Focal Therapies) to be a good option for some men rather than Prostatectomy or Radiation.

There is a very interesting discussion with the leading expert on Focal therapy in this radio programme.  The introductions are unnecessarily long but Prof M E's views are worth listening to. https://www.curetalks.com/event/rsvp/HIFU-Focal-Therapy-for-Prostate-Cancer/134/

 

Edited by member 01 Jan 2019 at 12:29  | Reason: Not specified

Barry
User
Posted 01 Jan 2019 at 13:34

Hi John, It was a template with a general 32 cores taken.  Regards Andrew

User
Posted 01 Jan 2019 at 15:49

Originally Posted by: Online Community Member

That is a fair point Ann but in need HIFU can be repeated or followed by Prostatectomy, or RT whereas with Radiotherapy tumours can regrow but treating them with further RT is problematical. 

 

That may be the case Barry but  who wants repeated treatments if they can avoid it. Is  yours not a case in point with your PSA increasing again and possibly  seeking more HIFU.

It may be a reasonable treatment for those with a short lifespan but if the conditions already exist in your prostate for cancer to develop why risk leaving it. You could very well miss your window of opportunity on the next attempt at treatment.

Just my opinion and of course no treatment option is perfect. None of them can ever guarantee permanent remission. 

Best Wishes

Ann

User
Posted 01 Jan 2019 at 16:30
Hi there,

We were offered a private HIFU as a first treatment for my husband’s G6 ( 3+3) large tumour. We decided to go to the USA for a focal laser ablation as an alternative focal treatment.

Ann makes a very valid point which is the the view of many ( aim to get rid of the risk in one treatment)

However many, as Barry says, are overtreated and we decided we would rather deal with any subsequent recurrence as needed rather than lose quality of life ( My husband was 53 at diagnosis and the risk of incontinence and ED appalled him)

Aiming for the trifecta (cancer control, no incontinence and no ED) is the preference for some therefore. My understanding is this is what the focal specialists are aiming for.

It’s a shame there are no guarantees of cancer control with any treatment option at the moment.. hopefully 2019 will see a breakthrough.

We will deal with a reoccurrence as and if it happens but in the meantime no regrets about a focal approach for his diagnoses low risk, high volume tumour..

User
Posted 01 Jan 2019 at 21:42

Had the MDT not seriously advised that in my case they believed it would not be possible to remove all my cancer by Prostatectomy, I would have opted for surgery, (It was beyond Focal treatment too). This left Radiotherapy which can cover a more extensive area and 10+ years after RT, a 68 Gallium PSMA scan and an MRI showed no cancer outside my Prostate, so the RT did a good job in this respect. Unfortunately, as can happen with a Prostate, even a quite extensively radiated one, tumours can regrow. Some of these may need treatment whilst others are not significant and can be left. My first HIFU treatment dealt with the first regrown tumour but a very small tumour has since regrown in another part of my Prostate and consideration is being given to treating this. There could be other as yet small tumours (multifocal) that have not yet been identified. (I urge members to listen to Professor M E who covers this aspect in the link I gave). I could have stopped any further cancer developing within my Prostate by having a late Prostatectomy as there are a few surgeons who will do this tricky op post RT but I was told there would be 100% likelyhood of permanent incontinence apart from other adverse side effects. So I preferred to have HIFU and again in need. HIFU like other treatments should only be given to suitable patients. I could have just relied on HT until I become refractory and suffered the effects of this and possibly other further down the road systemic treatments but much better in my opinion to have repeat HIFU.  How do you think I could have done better Ann?

Should it be decided that the small regrown tumour I now have would benefit from treatment, my first choice would be Focal Laser Ablation (FLA) as it is very precise with less collateral damage than HIFU. This also means it can treat nearer to critical organs. This is what Clare's husband had but unfortunately it is only available abroad and at considerable cost. Even with FLA it is still possible that further tumours may develop over time and there may be a need for further FLA or more aggressive treatment in due course.

Of course, everybody diagnosed with PCa hopes that one primary treatment will be all they will ever require and for some this proves to be the case but for many men regardless of what primary treatment they have, it will need to be backed up by at least one other form of treatment to help them fight this disease.

Incidentally, the same argument against HIFU not treating insignificant tumours can be made for RT where greater precision means only part of the Prostate is radiated. HIFU is claimed to preserve more of the function of the Prostate than surgery or radiation.

Edited by member 01 Jan 2019 at 22:18  | Reason: Not specified

Barry
User
Posted 08 Apr 2019 at 12:26

Hi everyone,

 

I work for Prostate Cancer UK, in our research communications team. 

 

Recently, we funded a new clinical trial which aims to test focal therapy (treatments like HIFU and cryotherapy, that aim to treat just the cancer and spare healthy tissue) against standard whole-gland treatments. We're really excited about this new research because we think it has the potential to help make HIFU widely available to men in the UK.

 

To help make our supporters aware of this new research on focal therapy and HIFU, and of our clinical research in general, we have built several new pages on our website. 

 

We want to make sure these pages are as useful and easy to understand as possible, so we're looking for volunteers who can navigate the webpages, and then feedback to us by completing a quick online survey (10 minutes). I thought, as this thread is dedicated to HIFU, some of you may be interested in helping me with this. 

 

You can find the pages and the relevant surveys here: 

 

 

    1. Focal therapy webpage, and survey

 

    1. Clinical trials webpage, and survey

 

 

 

 

Thank you in advance for your help. Please feel free to get in touch if you have any questions. 

 

 

 

Ruby 

 

 

 

Research communications officer

 

Prostate Cancer UK

 

 

 

N.B - the HIFU trial has not begun to recruit participants yet, but once it does we will add it to our clinical trials pages. 

Edited by member 08 Apr 2019 at 17:12  | Reason: Not specified

User
Posted 11 Apr 2019 at 11:32

Hi again everyone,

If you haven't had a chance to check out our new web pages on HIFU and focal therapy treatments, and clinical trials, we would still really appreciate your feedback!

We just need a few more responses to make sure we get reliable results that we can use to make our webpages as useful and informative as possible.

Each survey should take you just ten minutes, and will be a huge help to me and my team.


Focal therapy webpage, and survey

Clinical trials webpage, and survey

Thank you in advance,

Ruby

Research Communications Officer, Prostate Cancer UK

 
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