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HIFU experiences?

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User

Posted 11 Aug 2025 at 15:24

Hi. I have been offered HIFU for my Gleason 4+3 cancer, and accepted, although it will take a few more weeks to get an appointment. I was attracted by the confidence from the Lon£on hospital consultant who saw me, and by the apparently milder side effects. However, I have just seen some negative comments about HIFU on here and wondered if anyone had anything positive to report, as I am starting to have second thoughts.

User

Posted 11 Aug 2025 at 17:08

Hi Tony

There are positives and negatives to every treatment for prostate cancer. Unfortunately, as others have also stated on here, people often tend to only post comments post-treatment, when they have had a negative experience. However, if all goes well, they sometimes don't bother to update and spread the good news when it's a success story. I myself had NanoKnife treatment, another focal therapy, as is HIFU, so I can only comment on my procedure. I wasn't suitable for HIFU due to the location of the tumour. I'm so glad I went with this option, which in my case, most definitely had the least long term side effects. Yes there were side effects, which have now cleared, but not the potential long term ones which I wasn't ready to accept from another treatment option.

Think about what's the most important aspect of recovery for you, apart from being cancer free. Weigh up the potential long term versus short term side effects and what would affect your daily lifestyle more.

This site is invaluable to all. The sense of community from a group of men and their partners too - someone always kind enough to reach out and reassure or give guidance or tell their story, because they have either been through it or are going through it. I'm sure you'll get many more responses.

Wishing you all the best in your decision and future outcome.

Seb

User

Posted 11 Aug 2025 at 17:10

Thanks for that, Seb. Reassuring.

User

Posted 12 Aug 2025 at 04:58

Hi Tony,

I had HIFU for failed RT. Some men need a second application of HIFU as happened with me. I had the second application in 2021 and MRI's and PSA tests led to my being told I am in remission. HIFU is a very easy procedure and I can't think of any side effects, although the RT I had initially meant that I had ED prior to the HIFU. The catheter I had for about a week was uncomfortable but after that no problem. HIFU aims to maintain Prostate function and to treat only significant tumours. If HIFU is unsuccessful, it can be followed by RT (if not already given) or Prostatectomy but the HIFU makes this more difficult (like Prostatectomy after radiation). Very long term outcomes are not known as the procedure has not been used for long enough.

Barry

User

Posted 12 Aug 2025 at 11:17

Thanks, Barry. I am getting paranoid about things like possible urinary retention plus, as you say, the fact that, if it fails, then prostatectomy is unlikely to be an option. Of course, if I’d opted for the prostatectomy, I’d be obsessing about urinary incontinence, instead!

User

Posted 12 Aug 2025 at 16:04

Prostatectomy after failed HIFU is possible but more difficult and increases the risk of incontinence. For salvage Treatment for failed HIFU I would favour RT if a second HIFU is ruled out and it was offered. Incidentally, you can get HIFU on the NHS now but not many places do it.

There are pros and cons with all treatments and as a patient it is often left for you to decide, as men can see it differently. The problem is that you don't know in advance how successful any treatment will be and how severely you will be impacted by side effects. As the dealer says, "Your call".

Edited by member 13 Aug 2025 at 01:34 | Reason: Not specified

Barry

User

Posted 12 Aug 2025 at 23:34

Hi Tony

after diagnosis my first treatment choice was HIFU , I was 3+4 , I have mentioned it on here before that all my NHS nurses and urologists were very negative about it which was unsettling , I also had nowhere near me that did it on the NHS

i carried on research though and was quoted £15K to have it done privately, I was though told that 1 in 4 need another treatment within 4 years , this put me off as I really didn’t want to keep looking over my shoulder then potentially have to pay again further down the line , this also doesn’t account for another tumour deciding to pop up

I am now booked in for surgery next week, was adamant in the beginning that I wouldn’t go down this route but my own research over the last 6 months has pointed me in this direction and am now committed

wish you well mate there crap choices that is for sure

Nick

User

Posted 13 Aug 2025 at 03:03

Nick,

Good that you have made your reasoned treatment decision.

You don't show where you are located in the UK but I don't know why anyone would have contemplated paying 15K for HIFU when they could easily fly or get transport to London, maybe stay a night or two in a hotel and return to wherever after treatment for a fraction of this sum using the NHS. I live in Devon, close to the border with Cornwall, so something like 220 miles from London hospitals and had my second HIFU during the Covid Pandemic in 2021. As the hospital wanted me to minimise contact with others, they arranged for me to be taken by car to London early in the morning, have my HIFU and then return me to Devon by car the same day. If this had happened outside of COVID, I would have stayed for one night in a London Hotel, had the treatment and gone home immediately after it, largely travelling by train. I regard it like having a tooth filled, you don't just pull it out because it might need further filling or attention at some time in the future and believe me, having had dental implants, that was much more painful.

Barry

User

Posted 13 Aug 2025 at 08:09

The reason is Barry that since diagnosis I have found the NHS to be nothing short of a nightmare on every level , It is nice that you seemed to get a good service from them and I wish that was the case for me but it wasn’t , at every turn where I tried to investigate HIFU options with the NHS I faced a brick wall hence the reason I started looking at private options , I will also add though it wasn’t just HIFU that the NHS have been horrendous with hence the reason that I am now paying privately for the prostatectomy

Edited by member 13 Aug 2025 at 08:19 | Reason: Not specified

User

Posted 14 Aug 2025 at 04:26

Although my actual treatment has been excellent in my London Hospital (It was done by the same person who would have done it privately), the administration has sometimes been very poor. I will give an example. On one occasion, I was booked in by the hospital for two scans at overlapping times and in different buildings! When I pointed this out, I was told I should not have these scans on the same day anyway. There were other problems too, so following my complaints, my appointments were removed from the control of the 'Booking Team' and were made directly by the secretary of the Professor doing my treatment. It seemed to me like an appointment was made for say a scan or for another reason, without considering what other scans/appointments had been made. In other words there was no coordination or overall control in issuing appointments.

Follow up letters took ages and on two occasions I had to involve PALS to get a response. Some of my records also contained errors. So as I said on a previous thread , you need to check every aspect of your treatment.

Barry

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