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Considering HIFU

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User
Posted 07 Jul 2021 at 14:34

 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 20:36

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 14:57

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 08 Jul 2021 at 19:04

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 20 Sep 2021 at 20:17
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 14:33

Ok. Thanks for engaging with me.

User
Posted 21 Nov 2021 at 19:47

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 11:23
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 19:42
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 19:52

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 15:58

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.

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User
Posted 07 Jul 2021 at 14:57

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 15:53

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 19:04

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 21:06

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 13:54

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 18:17
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 18:58

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 20:17
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 20:20
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 22:02

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 22:03  | Reason: Not specified

User
Posted 20 Sep 2021 at 22:32

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 22:34  | Reason: Not specified

User
Posted 21 Sep 2021 at 08:43

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 08:46

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 10:04  | Reason: Not specified

User
Posted 21 Sep 2021 at 09:05

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 10:25

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 14:33

Ok. Thanks for engaging with me.

User
Posted 09 Nov 2021 at 20:10

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 21:36
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 21:42
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.
 
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