Focal HIFU vs Surgery

User

Posted 20 Feb 2021 at 14:21

1 thing I forgot to say, since I've been booked in for my focal therapy I've learnt your G.P can refer you to UCLH in London, it's currently a 3 month wait to get this treatment on the nhs. If I'm unlucky enough to have to repeat this, between years 3 & 5 seem to be when a repeat procedure happens I'll be getting on the nhs & my consultant who did my procedure this time has said he'll help me get it.

User

Posted 20 Feb 2021 at 15:06

Yes I've recently got a referral to UCLH. I've been told that NHS HIFU providers are more selective than private providers, and I don't know yet whether they'll deem me suitable as it seems pretty multifocal (2 Gleason 3+4s on right posterior, plus subsequent MRI showing very suspicous area left base and suspicous right lateral).

Odds are your HIFU won't fail - but is radical treatment still feasible as a second line treatment if it does, after a follow-up HIFU treatment?

User

Posted 20 Feb 2021 at 17:31

If the cancer comes back & another go on focal isn't possible I would have both options still open to me, prostectormy or radiotherapy. Apparently the prostate takes alot of damage when it gets hit with the focal therapy sound waves & it becomes mushy or soft & a prostectormy is a harder operation but still achievable by a good surgeon. When discussing focal therapy for the 1st time the consultant told me about this & also stated he knew surgeons that could perform this procedure so if I'm unlucky enough to have to go down that route 1 day he can help sign post me in the right direction.

When I mentioned this to the old cancer team that I've not heard a word from since I cancelled my prostectormy they said they have surgeons that can perform that type of surgery & that's Bristol. Just make sure your surgeons good!

With a Gleason 2 & a 3+4 that falls well within the remit for focal. I was Gleason 7 & a 3+4.

If you get offered focal therapy on the nhs your so lucky as theres only 2 or 3 places currently performing it so most hospitals won't even mention it.

If you speak to the hifu therapy people they wont take you if your not suitable so well worth everyone whos cancer is still contained within the prostate having a conversation with them. I wish I'd known before I got in debt that my doctor could have referred me but but the time I'd found focal therapy my wife wouldn't wait another day past the 1st date they could fit me in!

User

Posted 20 Feb 2021 at 18:50

Like you I've no symptoms (also feels benign on digital exam), but the surgeon's phrase 'suspicion of a bulge' has put the wind up me! The hospital seem to have done things the wrong way round - biopsy comes up with 3 + 4 in two cores, 3+3 in one (remaining 9 cores benign), followed by an MRI that identified two entirely different suspicious areas (PIRADS 4 & 5) at different locations. Which made it radiographically T2c. Not sure if this will mean whole-gland treatment, or if they can do focal on four different locations. Was wondering do the HIFU people do their own MRIs or biopsies?

I think there's a greater chance of side-effects (and longer on a catheter) the more of the gland they treat.

The waiting time is a pain, I suppose you pay to get seen quicker. Apparently Imperial and Charing Cross also do NHS HIFU.

User

Posted 20 Feb 2021 at 19:36

The consultant you see, whether that's private or nhs will request your mri scan & your biopsy results before you speak to them. I gave over the information I had but didnt trust myself to be accurate so was glad he got them.

From what I was told the hospitals always go on the extreme, so if your cancer is a maybe high score there'll just put it higher. I had a bulge in my capsule as well & was really worried but after speaking to the consultant I was put at ease about it.

I did a GoFundMe & some consultant got in touch & said I could get it for free at UCLH, I asked about the waiting time, he said 3 months. I'd have waited 3 month's but like I said earlier, there was no way my wife was having that.

Hope you get your appointment soon.

Good luck

User

Posted 21 Feb 2021 at 01:38

Originally Posted by: Online Community Member

Odds are your HIFU won't fail - but is radical treatment still feasible as a second line treatment if it does, after a follow-up HIFU treatment?

That is not quite right although I guess it depends what you mean by fail. Odds are that the treatment will not eradicate the cancer and it will need to be repeated but since the OH is well aware of that and prepared for it to be a temporary fix, he probably wouldn't consider that to be a failure.

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

User

Posted 21 Feb 2021 at 01:43

Originally Posted by: Online Community Member

Apparently the prostate takes alot of damage when it gets hit with the focal therapy sound waves & it becomes mushy or soft & a prostectormy is a harder operation but still achievable by a good surgeon. When discussing focal therapy for the 1st time the consultant told me about this & also stated he knew surgeons that could perform this procedure so if I'm unlucky enough to have to go down that route 1 day he can help sign post me in the right direction.

That is a tad optimistic as well - it is true that RP might be possible after HIFU but be aware that it is unlikely be nerve sparing, and the risk of incontinence is much higher.

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

User

Posted 21 Feb 2021 at 02:56

This is the largest and most recent trial undertaken at leading hospitals and by eminent consultants. (Four of these named consultants have been involved in my case). https://www.thefocaltherapyclinic.co.uk/wp-content/uploads/2021/02/41391_2020_315_OnlinePDF.pdf.

Some of it is difficult for the layperson to fully comprehend but it is clear there is not a lot of difference between the efficacy of treatment failure/success between RP and Focal Therapy over the period of comparison.

More easily digested, "10 Year UK Clinical Trial: 625 men were treated with HIFU Focal Therapy
Cancer Control. 80% are cured and need no more treatment
13% will need an additional HIFU treatment within 5 years
7% will need to progress to either a radical prostatectomy or radiotherapy within 5 years....."

from

https://www.thefocaltherapyclinic.co.uk/high-intensity-focused-ultrasound-hifu/?gclid=CjwKCAiAg8OBBhA8EiwAlKw3kgUijrDlJcp4AhXXKyM01bPa0n1T0enW4hf0z0a9hNWR4YGQsvmA8RoCCCAQAvD_BwE

So odds are that Focal Therapy will be successful in the time frame and where necessary RP or RT can be given as salvage treatment for it.

Edited by member 21 Feb 2021 at 03:34 | Reason: to highlight link

Barry

User

Posted 21 Feb 2021 at 12:34

Thanks barry, very encouraging for me I think, I'm hoping I'm in the 80% but if not I'd have a repeat procedure rather than a surgery or radiotherapy. I'm only 50! the consultant I saw has just put in his 9 year data for focal therapy & said the results where very good & next year he'll finish his 10 year study, apparently that's an important date.

Obviously it's all about personal choice & personally the 2 options I was given weren't options I could take with any hope. Southmead cancelling my operation at my preop was the best thing that could have happened to me. It meant my wife was worried & open to listen to the focal therapy salesman when he rang that night. I'd filled a form in online the Saturday before to see if I was eligible & he rang the night when I had no treatment plan for my cancer, perfect timing. If I wasnt suitable for focal they wouldnt have let me do it, £13995 or not. I'll be a number on there study now & they want this to be successful. My consultant turns people down who come to him because there cancer can't be treated.

If I'd had the planned prostectormy I don't think I'd have been incontinent for 1 day, the day the catheter was taken out ( 8 days after the procedure) & I think there may have been some erection problems, at the moment theres none of that. My prostate got seriously damaged so it's not totally fine yet but getting there...

Fingers crossed I'm in the 80%

& if I have to have a repeat procedure between 3 & 5 years ( as the consultant told me may happen) it will be for free on the nhs, available in more hospitals & still for me much better than a prostectormy.

User

Posted 21 Feb 2021 at 16:33

Hi Barry, the context of the research data you have quoted is important - even the focal therapy clinic are positioning their treatment as an option for men who are suitable for AS rather than those who need radical treatment. This interview with Alan Doherty is also published on the FT clinic website (presumably for balance) and makes the point that HIFU outcomes cannot be compared with RP / RT outcomes because the patient groups are different.

https://www.thefocaltherapyclinic.co.uk/an-alternative-view-on-the-ft-v-rp-study/

I don't doubt for a second that HIFU might be a good choice for a) someone who doesn't need radical treatment but who feels anxious about AS b) someone who understands that it might only be a temporary fix and is emotionally and financially prepared to need it repeating and / or c) as a salvage option following failed RT but it is important not to to imply to new members yet to join us that HIFU is a realistic alternative for a man who needs radical intervention - even the FT clinic website is clear that this is not yet the case.

Mickey seems fairly realistic about it although it is a shame to lay out £000s and then find out it could have been done differently and I am surprised if the provider agreed to do it for an 85% tumour. Mickey, was it 85% of that half of your prostate, or 85% of the cores taken in the biopsy?

Edited by member 21 Feb 2021 at 20:37 | Reason: to activate hyperlink

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

User

Posted 21 Feb 2021 at 19:07

85% cancer & a 3+4 on the right hand side of my prostate & 1% on the left, 3+3

They concentrated there focal treatment to the right hand side.

In a years time I get an MRI & that will be the 1st time we'll get to see if it's all gone. They had me booked in for a prostectormy!!!! Imagine if focal has killed my cancer, what does that say about my cancer team that never even mentioned it to me! In fact when I asked they didnt know anything about it. Until I cancelled my operation & got a phone call from 1 of the team telling me my cancer wasn't suitable for focal therapy!!

My consultant is also named in the study Barry posted, I took that as a good sign.

User

Posted 21 Feb 2021 at 22:10

Before I posted I did read the unsupported alternative view of Alan Doherty who we know is a top surgeon but not a HIFU specialist. Even he agreed there was a place for HIFU and suggested that results within the trial were so good becuse the men were carefully selected and treated by highly competent clinicians. This should of course always be the case but I take the view that practitioners of HIFU are in a better position to decide whether a man is suitable than a surgeon lacking experience in the procedure. In any event, some Surgeons cherry pick cases to show good perssonal results. There comes a time in many cases where a decision has to be made between surgery or RT and arguements can be made for and against either form of treatment. In the same way, a decision has to be made as to whether the significant cancer in an individual case can be reasonably treated with HIFU (or another form of Focal treatment) or whether it calls for more radical treatment.

Barry

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