Considering HIFU

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

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.

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

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

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.

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.

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? 

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

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. 

"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

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 :-)

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

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.

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

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 😄

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.

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... 

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.

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.