I'm interested in conversations about and I want to talk about

Know exactly what you want?

Show search

Notification

Error

Focal HIFU vs Surgery

Email this conversation Print this conversation

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 moderator 06 Jul 2023 at 10:37 | 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

User

Posted 17 Jun 2022 at 13:06

I've not been on for maybe a year! I can now give you a follow up of my experience of focal therapy treatment.

I had to pay £13,000 to have it, it was never mentioned by my hospital in Bristol, they dont do it but I found it as my prostatectomy got cancelled because I'd had covid!

I had my treatment in the after noon & left on the same day with a catheter on & taking 22 tables a day for 1 week. After 1 week the catheter came off & the tables halved.

I had 1 days leaking after the catheter was taken out & got para that that was a long lasting thing but it never happened again after the day it come out.

I had blood clots in my wee for a few weeks, I woke up 3 days after the treatment when I had the catheter in with a semi erection so knew that wasnt going to be a problem. Woke to a pain that made me smile! & there was never any issues with that.

Probably a month later I'm not taking any tablets or having any issues what so ever.

I've just had my 1 year MRI ( 1 year 4 months after treatment as I had it on the NHS at my local hospital and that caused some issues! But all got sorted in the end)

I had 85% cancer on the right hand side with a bulge in the capsule, I now have nothing! Completely clear.

I have a left hand side I need to keep an eye on incase 1 day that develops into something as there is a tiny bit there but focal therapy treatment works for me so if that happens I'll get the same treatment but for free on the NHS next time. My consultant agreed to do that for me before my 1st treatment.

I knew nothing about cancer & treatment & all that when I had my 50th birthday in October 2020, 1 month later I was being told I had prostate cancer, with no symptoms, just showed on a blood test! Now I know a little bit about whats out there available to men for there treatment plans I think its disgusting focal therapy is only available at 3 places in the country on the NHS, really disgusting. A prostectormy is an old operation with no thought to the mans condition your leavening him, physically as well as mentally. I've spoken to a few men who have had prostectormys & they've been left mentally damaged.

Breast cancer treatment is so far ahead of prostate cancer treatment yet by 2030 prostate cancer will be the highest diagnosed cancer in the country.

I get psa blood tests ever 3 months for another 4 years, I'm hoping to get an MRI every year but that be harder to arrange but I've got plenty of time to try & arrange that & that is thanks to focal therapy.

Good luck to anyone who's looked this thread up & read this.

User

Posted 17 Jun 2022 at 21:42

That's brilliant - congratulations

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

User

Posted 18 Jun 2022 at 03:30

For a suitable man, who understands that a further HIFU session may be required or even a more radical treatment in some cases, it or another form of focal therapy is certainly worth consideration.

As regards why HIFU is not more widely available, there are a number of reasons of which the following I have seen mentioned, although there may well be others.

1. Long term results are not yet known whereas results of surgery and radiation have been assessed over many years.
2. For some men, it is not sufficiently radical like surgery or radiation to do what is required.
3. Surgeons need to have worked hard at developing their expertise in doing challenging prostatectomies. There is a reluctance on the part of some to change to the rather more straightforward HIFU procedure.
4. Hospitals already have facilities for surgery and radiotherapy, why, they reason, should they spend out on another form of treatment?
5. It has been stated that current remuneration for performing HIFU is not a sufficient inducement.
6. The procedure has been criticized or dismissed by many consultants and it not widely known about.
7. Training facilities for surgeons to learn how to do the procedure are rather limited at present.
8. It is only quite recently the procedure has been administered within the NHS (other than in a trial) and then more likely as as a salvage treatment for failed RT.

Hope you continue to do well.

Edited by member 18 Jun 2022 at 03:35 | Reason: spelling

Barry

User

Posted 18 Jun 2022 at 15:39

It wasn't offered to me, I was booked in for a prostectormy January 21st 2021 but at pre op it was cancelled because I'd had covid over Christmas!

( yes covid saved my cock!l)

I then found focal therapy on line, filled in a questionnaire & got a phone call back.

My prostectormy was put back on but I cancelled it & had focal for £13,000 instead!! Still paying for it now!

But worth every penny, I had no side effects at all. Maybe I'm very lucky.

Theres 3 places you can get focal therapy treatment on the NHS, I really hope that increases MASSIVELY now they have 10 years worth of studies on the subject & I clearly couldn't support the treatment more.

User

Posted 19 Jun 2022 at 04:07

It can't be overemphasised how uncertain PCa and it's response to treatment to individuals can be. Those administering the treatment can also affect results. This applies to all treatments and HIFU is no exception. My first HIFU was in 2015 to deal with failed RT done in 2008. A small tumour had subsequently grown and the HIFU partially eradicated this and lowered PSA to 0.39 initially. However, PSA slowly but persistently increased so in December 2021, HIFU was repeated and 3 months on PSA was 0.02. Hopefully. it will stay around this level this time. I could as an alternative have gone onto HT but I will only do this as last resort!

Just as with other forms of treatment, there are cases where Focal Therapy has not ended significant cancer, I say significant cancer because with HIFU in particular, the intention is only to treat significant tumours and over time insignificant ones may develop and need to be treated as significant ones. I think this has to be borne in mind.

This is a very long blog, readily available on the Internet, so confidentially is not a problem. The author has now updated from 2013 when he was diagnosed, to 2022 and he details his journey through Cryotherapy and HIFU to Radical Prostatectomy in considerable depth. There are a number of links, some of which some might find too explicit showing procedures but others with well known practitioners just talking about Focal Therapy, scans etc., with much forward thinking having now been adopted. The blog is not the easiest to follow but in my opinion worth exploring. https://andrewhamm.co.uk/prostate/blogdetails.htm#top-of-page

Edited by member 19 Jun 2022 at 04:09 | Reason: Not specified

Barry

User

Posted 04 Feb 2023 at 17:07

Hello there, how did you get on and which treatment did you opt for ?

I have just been diagnosed: 3+4, PSA 3.85 and eligible for HIFU. I am 56. At the start of my journey.

Love to hear your experience.

Regards

Sean

User

Posted 04 Feb 2023 at 17:10

Hi Mickey

How are you and how did HIFU go ?

I am 56 - just diagnosed with 3+4, PSA 3.85. I am eligible for HIFU and at the beginning of this journey.

Love to hear your story.

Regards, Sean

User

Posted 04 Feb 2023 at 20:07

Hi Sean

I tried to send you a private message but it wouldn't let me & then I thought why would I keep it private, probably because some people will reply with facts and figures & I don't want to get things clouded for you but then I realised you asked how it had gone for me & I've not been on in 2 years to actually give any sort of update.
1st I got to thank everyone & anyone who answered any of my posts in 2021 when I found this site, 6 weeks after being diagnosed! I did f*** all for 6 weeks after diagnosis, not even bath! I wasn't ill in anyway till they said I had cancer....
Anyways the update.
Sean....
I had focal Therapy treatment on 3rd February 2021, I didn't sleep the night before or the night after I'd had my treatment. I wore a catheter for 1 week & took 22 tablets a day! I started to feel very old at 50! After 1 week the catheter came out/off & the tables got halved.
On the 3rd morning after treatment and with a catheter in I woke up in pain with a massive hard on! Never have I been more please to feel a pain!
So I knew I'd be alright on that front. The day the catheter came out I leaked wee & panicked thinking I was incontinent! Then my wife ( she took the catheter out for me, she's a nurse ) She explained the tube has to settle down, I never leaked wee again after that day. I had to be quick when I needed to do a wee & would just go do it & practice holding it as I did it & that wasn't a problem. There were bits in my wee! That was strange but nothing to worry about. I reckon it took 2 months at most for me to have no sign that I'd just had treatment for anything.
I had my 1 year MRI in may last year, it was later than planned because I wanted it eat my local hospital on the NHS & I didn't want to pay. I had the MRI. When I was diagnosed I had 85% cancer on the right hand side of my prostate with a bulge in the capsule, that's 100% gone!!
I know! How f****** amazing is that! Unreal.
My follow up has been nothing as I've not needed anything or anyone. I had psa done ever 3 months after the treatment, that was down from the 1st time I had it after treatment from where it was before. That's now back to normal & I'm having them every 6 months now.
My 1 year MRI showed something on the left side of my prostate, there was something small on the left when I had my very 1st MRI pre diagnosis, on my way to being told I had cancer, so we knew that. Now I'm engaging with my local hospital who did the MRI & wanted to send me for a biopsy & my (Name removed by moderator) who did my focal Therapy treatment. He's now my cancer consultant! I won't make any decisions about my cancer without his input, unless I want to & no thanks (Name removed by moderator), I do not. & This is all from meeting him & him being the guy who did my treatment but he's now my Cancer consultant and I'm not paying anything.
My PSA is normal, that's a good indicator of what's going on so having a biopsy ( my least favourite part of everything my body went though) at this time is unnecessary. In talking to my hospital about all this they agreed & will give me another MRI 1 year after the other 1 to see if there's any change. My consultant (Name removed by moderator) will also look & we'll decide what I'm doing, nothing hopefully.
I had my treatment done on the private, Harley Street London, I could have gone somewhere else for the same money so OBVIOUSLY I went there. (Name removed by moderator) was my doctor I had my consultantation with at the focal Therapy clinic, he made it very clear to me that I would never have to pay for this again if I needed it. I'm kinda poor & he kinda knows it 🤣 he knows I'm not the sort of person who would go private. He has been amazing from the very start, went over the consultation time by over 1/2 hour ( with me looking at the clock thinking this is going to be over & he's not go to what I can have yet ) he let me know this is a 1 off payment & also knows I've sent someone to Southampton hospital when he was diagnosed with prostate cancer so he could get it on the NHS. He's been brilliant & like I said, the best thing to come out of this experience ( him & the propfol but that's another story 😂 )
I hope that answers your question. Since I had my treatment I've had someone my mum knows who had focal Therapy treatment at Southampton hospital & was back at football 2 weeks after.
(Name removed by moderator) said if I ever need focal Therapy treatment in the future my result shows I'm susceptable to focal therapy and that makes me feel much more confident if I ever have to get involved in anything like that again.
I started this thread about 2 years ago, I've not been back since my treatment. The question was focal Therapy treatment or a prostectomy. My prostectomy was cancelled at pre-op, 10 days before my life changing operation with life changing effects & 2 days before I went to pre op I filled in a form online, am I eligible for focal Therapy treatment. They rang the night my operation had been cancelled! They explained the side effects & cost ( more but I was only interested in those 2 things)
Focal therapy treatment saved my life but much more importantly my cocks life! We're both very grateful.
Ok.... Here goes.....
I knew nothing about prostate cancer, not a thing until cancer nurse kate rang & said I had it.
2 years later I know more than I did. I know 1 in 8 men will have it. I know by 2030 prostate cancer will be the highest diagnosed cancer in the UK & a prostectomy is an out of date butching operation with life changing effects physically & you can leave the man mentally fucked but you've got the cancer out so the operation is a success and your cancer free but it doesn't have to be so severe, so life changing. It's disgusting focal Therapy treatment is only available in 3 hospitals on the nhs in the UK, Southampton & 2 in london. Your cancer path way is normally your GP sends you to the hospital & your then in there hands. My local hospital doesn't do focal Therapy so it never got mentioned to me! There world renowned for prostectomy operations, have Drs from around the world come & learn to use the machine they do them with. I got done by the cancer post code lottery! Apparently that's a thing!
I've met people who have had prostectomys who have been engaging with there hospital for years! That must cost a few quid. I had my MRI there but apart from that I've not seen anyone, so cost effective as well as life saving.
I'm currently in conversation with my local M.P about finding out why we haven't got focal Therapy treatment available in Bristol which is a city on the NHS & they have in Southampton & then I want Bristol to provide focal as an option so all men can have it if there suitable.
I understand there's a time & a place for a prostectomy but the time isn't a 50 year old & if there's a none invasive treatment with minor side effects then that should be looked at
Sean, I'd have focal Therapy treatment over any of the other options & I've heard them as well.
Hope that helps you in some small way. I hope you got people around you at a time like this & remember most of all ( your result where just the same as mine) it's NOT a death sentence. Good luck with your journey.

Edited by moderator 04 Feb 2023 at 22:55 | Reason: Not specified

Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.