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HIFU Therapy?

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User

Posted 12 Dec 2022 at 15:19

Has anybody here had HIFU treatment for localised PCa?

If so could you advise your experience in terms what side effects/complications have been encountered and how effective it has been?

I appreciate that this treatment is only avaliable in specialist NHS hospitals of being done on trials and still awaits NICE approval.

User

Posted 12 Dec 2022 at 16:18

Tried to send you a private message but seems not long enough on site

to do this! Had HIFU end of September in London.Side effects I've experienced are urge incontinence ,though

minor, and erectile disfunction-major) though had neither of these prior to the operation.Was warned about these possible side effects in the letter which came before I signed the consent form. With ED could be as high as 50/50.

Cannot stress too much that these side effects are particular to me, many men will escape unscathed and some may have worse side effects than me. The point I'm making is that whatever treatment one opts for -whether it be

prostatectomy, hormone and radiation therapy or HIFU, entails a degree of risk.

As to outcomes I am completely in the dark about this.Saw my surgeon for about a minute(literally) before my operation , whilst being prepared by the nurse. No contact since. Have they eradicated the cancer? No idea as yet.My partner feels that had there been a problem the hospital would have contacted me by now.And it must take quite a while for the prostate to settle down after the hammering its taken. Plus all the tiny bits of burnt dead tissue that you may pee out in the weeks after the operation.

Have a PSA test on the 19th December and a meeting with the consultant on the 4th January 2023, when

I should get more information. Hopefully it will be good news.

HIFU is minimally invasive, but IS invasive nonetheless.What annoys me are some of the adverts on the internet from a certain private clinic ,where the chap says that after the (HIFU) operation "all my plumbing is back in order just as it was before the operation". No doubt true for him but giving the impression that all candidates for HIFU(or any other prostate treatment) will end up in the same happy place.And that is clearly not the case.

Wishing you all the best, no matter which course of action you intend to take.Martin.

User

Posted 12 Dec 2022 at 17:10

Hi Martin

Thanks for the quick reply.

Was this done in an NHS hospital or privately and did you have to be catharised for some time following the procedure?

Yes the immediate side effects for you are disappointing, as these are some of which the HIFU therapy is supposed to minimise/avoid, though as you have indicated it is very much a individual by individual situation, thought having had the therapy in Sept to still have them must be very frustrating for you.

Recognise that all the options available have their own good and bad points and side effects, I guess it's just a question of trying to choose the least worst one.

Are you due to have a follow up MRI scan of just the PSA test?

Trust that your own follow up PSA and any other tests done will give you good news.

I believe that your PSA, Gleeson score and T Gradings have to be below certain threshold levels to be accepted for the therapy and that it is still very much in it's infancy.

Did you personally have to wait a long time to see the surgeon and then have the surgery?

Andy

User

Posted 12 Dec 2022 at 17:53

Hi Andy

It was an NHS op-no complaints about that.All the staff caring & competent. West London-Charing Cross Hospital.

My experience is that if you want HIFU you have to push for it. Oncologist tried to persuade me to go down

the hormone/radiation route but thought the side effects too severe for me .He said cancer likely to recur with HIFU

which can often happen, but as I said earlier, risks with every treatment. At least with NHS I didn't have to pay, though

having paid taxes over 50 years & never having been in hospital for an operation before, I feel I've paid my dues.

Only having the PSA as far as I'm aware, though dare say another MRI could happen in due course.

Had the Catheter in for a week after the op.Its a nuisance more than anything else but removable(for me)was painless.

Apparently nurse said I had a problem with water retention so had to self catheterise every other day for about 2 weeks,

Worst bit is wanting to pee in middle of the night but not being able to!I found the self catheterisation easy to do, and after the

first two weeks only needed to do it three times more in the next 2 months. Think my utethra may have been narrowed

(side effect of operation?) as when I urinate now I sprinkle all over the place ,whereas before I had a straight strong stream.

Well,there we are. No regrets about the procedure. If it keeps the cancer at bay it will have been worth it.Martin.

User

Posted 12 Dec 2022 at 20:00

"Recognise that all the options available have their own good and bad points and side effects, I guess it's just a question of trying to choose the least worst one."

No it's not about choosing what option open to you is the least worse but for you as an individual which you consider is best, which can be different.

As regards HIFU, it has been used in the UK for over 15 years, albeit on a small scale and for most of the time being limited to trials and done privately. Moreover, this procedure has been largely given for failed RT. However, although not widely available it's slowly increasing in a number of facilities. Experience has shown that results are better where the tumour(s) are few, small and on one side of the Prostate and this also helps maintain as much function as possible which is one of the objectives and why only significant tumours are usually treated.

I had HIFU in 2014 and 2021 as salvage treatment for failed RT and the 3 PSA readings this year have all been 0.02 which is the lowest since when I was diagnosed in 2007. (I was due for a follow up MRI last week but this has been deferred due to the scanner breaking down). It was more painful on the first occasion but much easier both times after the catheter was removed about a week later. There was only a merest hint of blood in my urine which was almost immediately back to pre treatment frequency. I think the amount of blood and clots where experienced, will vary with how much cancer needs to be treated. Unfortunately, a combination of HT/RT led to ED back in 2008, so I can't relate this to HIFU. However, from my experience and from what I have read of that of others, side effects are usually comparatively mild and for suitable men HIFU can in need be repeated or where more radial treatment is required this is also possible. As with any form of treatment, HIFU can fail. Apart from long term side effects analysis being unavailable, it has been suggested that surgeons who have trained and developed skills using 'Open' and in some cases 'Robotic Prostatectomy' don't wish to change to a more simple and less demanding form of 'Focal Treatment'. It has also been suggested that payment to the surgeon for Focal Therapy is too low to be an inducement for some to adopt Focal Treatment.

Edited by member 12 Dec 2022 at 21:02 | Reason: spelling

Barry

User

Posted 13 Dec 2022 at 15:48

Thanks for your reply and input.

Unfortunately all of the current options that are available come with risks and side effects, many of which overlap which ever pathway one decides to go, so trying to choose one is extremely difficult.

As you have indicated HIFU does seem to be good as a recovery treatment but not accepted by NICE yet, due to lack of long term data and as such not regularly available in the UK.

On the surface by just treating the local area in principle it should reduce/minimise some of the main side effects such as ED and incontinence and avoids the issues you have raised with regards to the use of HT and potential bladder and rectal Ca when having RT.

It's good and encouraging to see that you are a long way from your original diagnosis and treatments in 2007/8 and that HIFU has proved to be successful as recovery treatment for you.

Yes I am sure that there will be a number of surgeons who will be resistant/uneasy in moving from straight surgery to the 'digital' treatment and as I understand it the NHS does not fully fund the full cost of providing the treatment if dine under the NHS, most likely since it does not have NICE approval.

User

Posted 13 Dec 2022 at 22:27

UCLH pioneer this procedure in the Uk I think. Check out the lead guy Prof E. they carry out the procedure either on nhs or via the private wing which I think is managed via a partnership with HCA.

User

Posted 13 Dec 2022 at 22:38

Thanks. Prof E is who I am being referred to at UCLH.

User

Posted 14 Dec 2022 at 17:44

Highly recommend extensive talk and question session here by prof ME. A lot of info on HIFU and where you can get it towards end of session. Unfortunately, guy doing introduction is not easiest to understand and some of the early slides are not clear but ME very good as you would expect from top HIFU and other Focal Treatment expert. https://www.youtube.com/watch?v=hn0-XoAWNvE

PS Surprisingly you have to say you are over 18 to watch.

Edited by member 14 Dec 2022 at 17:47 | Reason: to highlight link

Barry

User

Posted 14 Dec 2022 at 18:01

Thanks

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