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Considering HIFU

User
Posted 07 Jul 2021 at 13:34

 I am considering next treatment steps for my 3+4 Gleason Prostate Cancer.

No symptoms at the moment but slowing increasing PSA but still below 1.0

Have been on AS for 2 1/2 years and now considering Localised HIFU treatment whilst cancer is still localised. Also this may remove cancer completely but does not preclude a second HIFU or more radical treatment in the future.

The more radical things like External Beam Therapy seem overkill and potential side effects would be worse than anything I am getting now as I have no symptoms since a TURP.

Am pretty active and want to carry on cycling etc afterwards so wonder if anyone has has had a HIFU and can share experiences.

Thanks

User
Posted 21 Nov 2021 at 19:36

Hi Peter,

 the short answer is- yes, stop kicking yourself! Like everyone else on here , you made your decision based on the best information you had at the time, and on a subjective assessment of the risks you were , and were not, prepared to take. There is no Sliding Doors option, whereby different choices get to be played out in parallel. So you will never know if there was a ' better ' course , and there is no upside to you now in wondering if there was. 

If you have ferreted around on this site and others, you will see that there is no 'best' solution, and no 'wrong' one. They all offer shades of advantage and disadvantage. Having made a choice,  the one thing you can control now is your attitude to it. Be at peace with your decision.  

 

User
Posted 07 Jul 2021 at 13:57

Hi Chris I haven't had HIFU myself but a few members here have and I am sure they will post soon. I think you have taken a very sensible approach. If AS is suitable for you it is a very good option, you've done that for 2.5 years, but quite reasonably you think something else is now required. You have then plumped for the next least aggressive treatment.

HIFU was rarely offered on the NHS but in the last year or two that seems to be changing. Apparently you have a moderate chance of recurrence with HIFU, but I think with PCa having an attitude of I'm going to keep trying to push PCa down the line with minimal treatment, rather than I'm going to have an aggressive treatment is often a good idea.

   

Dave

User
Posted 20 Sep 2021 at 19:17
I think the point Guy is that men who are suitable for HIFU have only a small amount of low grade cancer. If it was a cancer that needed to be treated radically and / or quickly, HIFU wouldn't be an option. Generally speaking, HIFU is attractive to men who have been on AS but now need to act OR AS would be suitable but the man feels anxious about whether AS is too inactive
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Sep 2021 at 13:33

Ok. Thanks for engaging with me.

User
Posted 21 Nov 2021 at 18:47

I think HIFU works on small tumours, if 75%of cores have cancer it probably wasn't suitable. 

Dave

User
Posted 26 Nov 2021 at 10:23
Hi Nomis & Benchmark

Although like you a G7, we are all different, even age considerations. I can only say that 14 months after my HIFU I have no symptoms and my PSA is now below 1.

Good luck.

User
Posted 26 Nov 2021 at 18:42
Fingers crossed for you olefogey
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2021 at 18:52

Originally Posted by: Online Community Member

Lyn, 

When you speak of recurrence following primary treatment, do you mean new cancerous cells appearing, or discovery of some that had been left behind? 

A recurrence could be either, Peter. With focal treatment such as HIFU or cryotherapy, they don't necessarily set out to treat all tumours in the prostate, just a couple of the most significant or visible. This means that an amount of healthy prostate is still there and prostate cancer cells can develop from new OR clusters of cancer cells that were not targeted during the treatment become a problem and have to be treated later.

I think that Barry has had a new tumour grow in previously healthy prostate material. 

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

User
Posted 09 Dec 2021 at 14:58

Very early days but got first PSA results since HIFU. Told they can fluctuate at first so not getting too excited but level has gone to lowest ever at 0.33. Early Xmas present but at this level could easily be higher next time but for now couldn't ask for better.

 

Now if weather would relent can try a bit more on the bike! 

 

Hope everyone here can have a great festive season.

Show Most Thanked Posts
User
Posted 07 Jul 2021 at 13:57

Hi Chris I haven't had HIFU myself but a few members here have and I am sure they will post soon. I think you have taken a very sensible approach. If AS is suitable for you it is a very good option, you've done that for 2.5 years, but quite reasonably you think something else is now required. You have then plumped for the next least aggressive treatment.

HIFU was rarely offered on the NHS but in the last year or two that seems to be changing. Apparently you have a moderate chance of recurrence with HIFU, but I think with PCa having an attitude of I'm going to keep trying to push PCa down the line with minimal treatment, rather than I'm going to have an aggressive treatment is often a good idea.

   

Dave

User
Posted 07 Jul 2021 at 14:53

Also Rojeka posted on another thread

 

Hi Chris,

 

Your PSA still seems low at 1.0 and it may be a few years before you need any treatment dependent on MRI scan and biopsy etc.

 

However, I had localised therapy which has been successful and without any adverse effects. I had cryotherapy which i understand is needed for the anterior segments of the prostate and Hifu for posterior segments.

Thanked 1 time
User
Posted 08 Jul 2021 at 18:04

Hi Chris

l had a HIFU 10 months ago on the NHS at UCL hospital and was cycling within a month. I was also Gleason 3+4. Still no after effects.

Regards Bill

User
Posted 08 Jul 2021 at 20:06

Oh that is very useful information thanks, glad you seem to be able to carry on with life which is my aim at this stage in life whilst still active.

User
Posted 20 Sep 2021 at 12:54

Hi Chris 

Can I ask - When you had HIFU did you have cancerous cells in both sides of you prostate? If so were they 3/4 in both sides or were there 3/3s in both sides?

Guy

User
Posted 20 Sep 2021 at 17:17
Hi

I have not had the HIFU yet. In July they told me to think about all the options and see them start of Oct. They just postponed that meeting to December so I have told them I know what I want and do not need the meeting. Therefore have just been put on HIFU waiting list.

I have confirmed 3+4 Gleason on left posterior and only a suspicious shadow but no positive samples on the right. Therefore as it is localised and I am generally in good health, other than continuing to monitor this is the only treatment I would want at this stage. Will keep the thread updated. Any questions just ask

User
Posted 20 Sep 2021 at 17:58

Thanks for replying Chris.

It interests me that there is no sense of urgency from them about getting this done - in one way or another.

Presumably they have indicated to you that your condition is stable enough to wait potentially as long as December?

I’m pretty much a similar diagnosis to you and also in general good health. I’m 62.

 

User
Posted 20 Sep 2021 at 19:17
I think the point Guy is that men who are suitable for HIFU have only a small amount of low grade cancer. If it was a cancer that needed to be treated radically and / or quickly, HIFU wouldn't be an option. Generally speaking, HIFU is attractive to men who have been on AS but now need to act OR AS would be suitable but the man feels anxious about whether AS is too inactive
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2021 at 19:20
PS just because your score or staging is similar doesn't mean that you are in the same position. You may have significantly more cancerous cells or they could be nearer the edge or nearer the urethra... any of which could rule out AS and HIFU
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 20 Sep 2021 at 21:02

Yes, thank you. I’m aware of what you say. As it is I have been privately assessed as suitable for HIFU by a doctor who’s working both within and outside the NHS. I guess now I’m mainly interested in the waiting time involved in going on an NHS waiting list for HIFU versus having some other NHS treatment sometime in the near future?

Edited by member 20 Sep 2021 at 21:03  | Reason: Not specified

User
Posted 20 Sep 2021 at 21:32

Will let you know anything I find out. HIFU seems to have far less chance of messy complications and no actual cutting involved. I am an active cyclist and want to carry on. I could wait but who knows what will still be available on the NHS is a few years.  Also I am lucky enough to live in one of the few areas to offer the treatment. A few months ago the wait was 2 -3 months so I will wait and see.

 

I am 65 and cancer is localised as per MRI earlier this year so each case is looked at individually and seems we are both suitable candidates.

 

Edited by member 20 Sep 2021 at 21:34  | Reason: Not specified

User
Posted 21 Sep 2021 at 07:43

Thanks Chris.

3 months might be a long time for me, or so I’m advised. I was talking to a consultant about how long I could leave getting some kind of treatment done and he said in my case, though there’s no real urgency, he thought 3 months was stretching the boundary.

What region do you live in may I ask?

User
Posted 21 Sep 2021 at 07:46

Near Southampton - Consultant for HIFU is [Doctors name removed by moderator] who seems to be very prominent in this treatment. Hope you can get something within an acceptable window as your timeline seems to be tighter than mine.

Edited by moderator 21 Sep 2021 at 09:04  | Reason: Not specified

User
Posted 21 Sep 2021 at 08:05

Thanks.

(I think they may delete his name from your post), but interestingly  I have met him and he it was who assessed me as suitable for HIFU.

I understand that to be eligible for treatment there you need to be part of a clinical trial, is that right?

And also you need to be willing to accept their decision to put you on either HIFU or on Surgery, which is dependant partly upon chance? This is because their trial is around comparing the outcomes of HIFU v Surgery in patients of similar early stage or intermediate diagnosis and for the trial to be unbiased they can’t cherry pick those they deem would be most likely to benefit from one treatment or the other, so they have to choose who gets what  randomly.

Or am I wrong and if you want HIFU then that’s what you get?

User
Posted 21 Sep 2021 at 09:25

No I am not part of a trial. I was given the choice to consider of No action/HIFU/ One of 2 chemo radiotherapy treatments or a prostatectomy. I had 3 months to think about it and after loads of reading decided to have a go at getting rid of the cancer knowing other options are not precluded in the future. Having decided then they have placed me on a waiting list. As far as I can see it was purely a clinical choice for me to make no trial mentioned except for a more radical treatment option where they appear to be running trials.

User
Posted 21 Sep 2021 at 13:33

Ok. Thanks for engaging with me.

User
Posted 09 Nov 2021 at 19:10

Well had the HIFU a week ago and went back today to have the catheter removed which was a huge relief. Much too early to tell results but was painless - 2 hours under the anaesthetic  - out same evening.

User
Posted 09 Nov 2021 at 20:36
Great Chris, you will be cycling next month. A year after HIFU and a good MRI result I am great.
User
Posted 09 Nov 2021 at 20:42
Thanks for encouragement. Apart from tiredness (probably as Tamsulosin builds up) feeling generally ok. Hopefully before long will start with normal gentle 5 mins on turbo and wait 24 hours for any after effects and go from there. With no cutting involved I am optomistic and as last time one course of the Tamsulosin finishes will probably feel better.
User
Posted 09 Nov 2021 at 23:24

Glad to hear you've had you treatment, and that it has been reasonably easy so far, let's hope it continues that way. Obviously don't push things, but let us know how quickly you recover.

Dave

User
Posted 21 Nov 2021 at 17:39

I had RALP two weeks ago. It went well and margins were clear but I am still in the 'wet stage' of course. HIFU was mentioned to me only as a salvage procedure, if necessary. But I confess that now I wish I had researched it myself. Following a TURP in 2017, I was diagnosed G3+3 in just 1% of cores tested. Last year, my PSA rose and I had a perineal biopsy. This showed that my PCa had increased to G3+4 in 75% of 20 cores taken from a around my prostate. A fair increase. Does anyone know if HIFU may have been a feasible option, or should I stop kicking myself for not exploring the option before RALP? 

 

User
Posted 21 Nov 2021 at 18:44
I guess that is a medical question but I was 3+4 with it sufficiently localised for HIFU. I am 2 1/2 weeks post op. Catheter out and more or less normal activity now . Good control and flow now more or less normal and no pain, Obviously will be a month or two before we know results.
User
Posted 21 Nov 2021 at 18:47

I think HIFU works on small tumours, if 75%of cores have cancer it probably wasn't suitable. 

Dave

User
Posted 21 Nov 2021 at 19:14

Thanks Dave and Chris. And Chris, pleased you are doing well. I am 74, slim and fit. Was told that usually, cut off age for RALP is 75. Was also told that post RT or HIFU, salvage surgery, if required, can be problematic whereas salvage RT or HIFU after surgery is not compromised. My thinking and the reason I didn't research HIFU further was that, given my age, I wanted to minimise the possible need  for surgery when I may be too old. But I can't get rid of the nagging feeling I should have looked further into it and that I may end up an incontinent old man. 

 

User
Posted 21 Nov 2021 at 19:36
HIFU is okay if you a) have enough data to be confident that the affected area is very small, and b) have the resilience to be able to cope if the treatment fails. HIFU has a high recurrence rate in comparison to other primary treatments- the advantage being that it might be possible to have HIFU more than once.

Based on what you have said, it seems that HIFU would not have been a suitable option for you which is probably why you were steered away from it in the first place. With 15 positive cores, best place for your prostate is a petrie dish!

Try to look forward rather than back

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

User
Posted 21 Nov 2021 at 19:36

Hi Peter,

 the short answer is- yes, stop kicking yourself! Like everyone else on here , you made your decision based on the best information you had at the time, and on a subjective assessment of the risks you were , and were not, prepared to take. There is no Sliding Doors option, whereby different choices get to be played out in parallel. So you will never know if there was a ' better ' course , and there is no upside to you now in wondering if there was. 

If you have ferreted around on this site and others, you will see that there is no 'best' solution, and no 'wrong' one. They all offer shades of advantage and disadvantage. Having made a choice,  the one thing you can control now is your attitude to it. Be at peace with your decision.  

 

User
Posted 21 Nov 2021 at 19:46

Thank you Lyn. For me, that was a very reassuring and  uplifting response. And no, I don't think I have the resilience to cope with a recurrence. So, minimising the chance of one must have been the right choice.

I'll put my concerns to bed now. 

User
Posted 21 Nov 2021 at 21:19
👍
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 21 Nov 2021 at 21:21

"They all offer shades of advantage and disadvantage. Having made a choice, the one thing you can control now is your attitude to it. Be at peace with your decision."

Shades of advantage and disadvantage.... I love that, olefogey

Edited by member 21 Nov 2021 at 21:22  | Reason: Italics

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

User
Posted 22 Nov 2021 at 07:33

Thanks Olefogey

User
Posted 25 Nov 2021 at 19:26
Hope you don't mind me joining this thread. I'm 57yo fit & healthy, just been diagnosed, Gleason 3+4, in 6 out of 14 biopsy samples. MRI shows it is contained, small tumour on the right side. NHS recommending surgery (radical prostatectomy), or second option of radio + hormone therapy. Not offering HIFU or Cryo

I'm just wondering if I should look into HIFU or Cryo (maybe private or trial), is it likely to be suitable, or am I just delaying things and best to crack on with surgery while cancer is still contained?

Obviously a bit of a shock to lose my prostate at 57 years old, but if that is the safest/best option then I can live with it. But I don't want to find out later, after it has been removed, that I could have kept it...

All thoughts welcome :-)

User
Posted 25 Nov 2021 at 20:08

It might be worth asking if they considered it and asking why not suitable then at least you will feel happy that you have covered all the bases as it were.

 

I am Gleason 3+4 and my cancer was reasonably well concentrated from looking at the MRI.  As it was an option , for me, as an active person the after effects were much less than anything more radical which I can still have later if required.

 

Obviously too early to see how effective it has been but recovery is very good in my case. So really we are all different but it would be nice to know it has been considered and medically rejected rather than a post code lottery.

User
Posted 25 Nov 2021 at 23:42

So I am almost certain to now have HIFU next month as after AS for 2 years my PSA doubled to over 8 in 4 months about 20 month stable . Left smallish lesion around 8mm with 3+4 and less than 10% position also another 5 mm but no positive cores. I am 71 with other health issues from polio as a kid so most other treatments are likely to have not good effects on me.

Somewhat anxious but it’s obviously not going away and my logic was less side effect chance, can repeat possibly down the line if needed and all other options not that great for me.

I think that looking at the research across the globe HiFU isn’t that  new and there are quite a lot of research reports and it is slightly less effective in preventing recurrence down the line it’s a good first option for low to intermediate localised PCa. I also think the expert use of MpMRI just before the procedure and a urologist who is expert and done a lot of them makes for a better outcome maybe than the ‘average’ especially in earlier studies.

Let’s hope I manage the GA as I have some breathing issues but that’s my main issue as I take the plunge in a few weeks !

Edited by member 25 Nov 2021 at 23:45  | Reason: Typos

User
Posted 26 Nov 2021 at 01:11
Good luck Nomis - I look forward to your report after the event.

Benchmark, apart from exceptions like Nomis, choices of treatment could be summarised as:

HIFU v active surveillance - for men with very early, low grade cancer, T1

RP v RT (with or without HT) v low dose brachytherapy - medium risk cancer, G7 & G8, T2

RP v RT/HT v high dose brachytherapy v high dose brachy + RT/HT - high risk, G9 or G10, T3

Up front chemo, HT, apalutimide, enzalutimide, etc - advanced / metastatic cancer

Cryotherapy / green light laser therapy / proton beam therapy - gamblers and those who would not be distressed or bankrupted by a recurrence.

These are a little simplistic - for example, some men diagnosed with T3 are now offered pre-emptive chemo when they never would have been 5 years ago. And some men with T3b/T4 are offered radical treatments even though they are incurable - doctors want to know whether removing the gland slows down the progression. But HIFU is not generally an option to be compared & contrasted with RP / RT - the outcome is significantly poorer in terms of recurrence.

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

User
Posted 26 Nov 2021 at 06:30

Best of luck with the HIFU.

Having read tons of stuff I could see nothing to suggest HIFU was significantly poorer in recurrence but maybe there are other sources I have not read.

User
Posted 26 Nov 2021 at 10:23
Hi Nomis & Benchmark

Although like you a G7, we are all different, even age considerations. I can only say that 14 months after my HIFU I have no symptoms and my PSA is now below 1.

Good luck.

User
Posted 26 Nov 2021 at 10:26

Thanks LynEyre, much appreciated

I think I'm T2, will check.

I suspect RP is best for me, think I'm going to tell NHS to go ahead with that, 6-8week wait, but in meantime get private consultation on viability of HIFU

User
Posted 26 Nov 2021 at 11:20
That seems a very sensible plan
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2021 at 14:54

Oh that's a bit of a b****r. With my wonky bowel configuration I was kind of hoping proton beam might be more of a get-out-of-jail-free card, rather than a punt on the gee-gees 😄

 

User
Posted 26 Nov 2021 at 16:00
I wonder if you could have HT for a while to reduce the size of your melon and then have brachy? HT will make your plums shrink but not sure whether it would reduce the prostate enough.

Hold proton beam back for the future - it seems to have great results as a salvage treatment although not so great as a primary treatment. Definitely worth pursuing the focal treatments though, there may be research oncologists out there who would be very happy to take you on for cryo, proton or HIFU simply because you cannot have the traditional RP or RT and have nothing to lose.

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

User
Posted 26 Nov 2021 at 16:28

This is a great place for people to discuss all the options and take some feelings of control. Whilst waiting to have my Catheter out it was very sad that I had to sit to explain to an older Gent just what the Prostate was!  Made me wonder just how powerless he must have been feeling all through the various treatments.

User
Posted 26 Nov 2021 at 16:31

Lyn, 

When you speak of recurrence following primary treatment, do you mean new cancerous cells appearing, or discovery of some that had been left behind? 

User
Posted 26 Nov 2021 at 18:17

Hi Lyn, thanks for that. 

I have been on HT for about 18 months, attempting to get my PSA down, so I guess my melon should be as small as its going to get. ( Everything else has shrunk nicely!) At the start of the year it was about 100 cc, and my onco man was unsure it would have got small enough to fit with the standard parameters for brachy or HIFU.

Fresh MRI next week so we will see... 

User
Posted 26 Nov 2021 at 18:41

Originally Posted by: Online Community Member

This is a great place for people to discuss all the options and take some feelings of control. Whilst waiting to have my Catheter out it was very sad that I had to sit to explain to an older Gent just what the Prostate was!  Made me wonder just how powerless he must have been feeling all through the various treatments.

Stories like that make me very emotional - twice on here (in my time) we have had members so disempowered and alone that I have offered to travel to accompany them to their next appointment. 

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

User
Posted 26 Nov 2021 at 18:42
Fingers crossed for you olefogey
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 26 Nov 2021 at 18:52

Originally Posted by: Online Community Member

Lyn, 

When you speak of recurrence following primary treatment, do you mean new cancerous cells appearing, or discovery of some that had been left behind? 

A recurrence could be either, Peter. With focal treatment such as HIFU or cryotherapy, they don't necessarily set out to treat all tumours in the prostate, just a couple of the most significant or visible. This means that an amount of healthy prostate is still there and prostate cancer cells can develop from new OR clusters of cancer cells that were not targeted during the treatment become a problem and have to be treated later.

I think that Barry has had a new tumour grow in previously healthy prostate material. 

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

User
Posted 27 Nov 2021 at 01:16
"I think that Barry has had a new tumour grow in previously healthy prostate material."

I would qualify this in my case by saying "..had a new tumour grow in a seemingly cancer free Prostate that had been previously treated with RT as a primary treatment." I say 'seemingly', because sometimes there can be some cells that are radio resistant and their DNA is not sufficiently damaged to be destroyed/stop reproduction.. These cells can be so small so as not to be seen on MRI but eventually concern raised by the way follow up PSA changed. So although my Prostate was ostensibly cancer free for 2+ years after RT, it might have been harbouring some cancer cells all the time.

With increasing PSA over 6 years post RT, a subsequent MRI indicated a small tumour which was confirmed by biopsy. This tumour was treated by HIFU in 2015 and initially PSA reduced a little but then started to rise again, very slowly but persistently. In fact, it only reduced slightly following a TP biopsy earlier this year. I think this was because part of the tumour was removed in one of the cores that was taken in the biopsy. In retrospect, I am doubtful that the HIFU completely eradicated the tumour. Calcification and the original RT may have made the HIFU more difficult. However, a further attempt with HIFU was approved in this spring but has been cancelled twice due to reasons too involved to go into here. I do not wish to have a Prostatectomy at this stage with as I was told would be permanent incontinence, so I believe further HIFU is my only realistic chance of direct rather than systemic treatment.

So to summarise, after RT, residual cancer in the Prostate is likely to be due to radio resistant cells that have survived but with Focal Therapy, it could be that the procedure failed to kill all the intended tumour, an insignificant tumour became significant or a completely new tumour grew in a previously unaffected part of the Prostate.

Barry
User
Posted 04 Dec 2021 at 19:34

Some 3 -4 weeks on - drugs all finished and so far no ill effects at all and getting onto normal activities including some short bike rides and turbo sessions. Saw surgeon and understand Op went as expected although will be some time before we know how effective it has been. Started providing 3 monthly PSA blood tests although I am told theses sometimes take a few to settle down. MRI is usually scheduled for first anniversary of HIFU. sO certainly no worse than before and may have to wait and see how trends develop to see positive evidence of results. Given that I can carry on with a normal life I can accept that.

User
Posted 04 Dec 2021 at 20:13

That’s great Chris. I said you would be on your bike in no time! Hope your PSAs follow my trend after the HIFU they start around 2 and after a year down below 1.

 
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