Focal HIFU vs Surgery

User

Posted 01 Jan 2021 at 17:16

Hi everyone

I’ve just been diagnosed with prostrate cancer so everything is still a blur and new to me

So posting this and looking for anyone with similar position

Basically any advice would help

I’ve been given few options , like radiotherapy, surgery and HIFU

Although the doctor say radiotherapy isn’t really for me because of my age

Not sure what’s best for me at this stage

So anyone who had HIFU , please share your experience or surgery

Hope to hear from you guys

Thank you

User

Posted 01 Jan 2021 at 19:49

HIFU doesn't have fantastic results as a primary treatment but the side effects can be less dramatic so if you are happy to accept that you may need to repeat the HIFU in the future, it could be a good option. As I have just posted on another thread, the decision making should be a) which treatment gives me the best chance of remission b) can I live with the known and potential side effects and c) if not, which is the next best option but with risks that I can live with?

You can download the toolkit from this website and read about the different treatments and there is a helpful pros/cons sheet that you can use to list what is important to you and clarify your thoughts.

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

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 10 Jan 2021 at 09:11

Hi Mickey, I have been reading your story and like many on here deciding what form of treatment to choose isn't easy, my head was just all over the place and I couldn't see the light at the end of the tunnel at all. My Mrs told me I was focused on the wrong things ie ED and she wasn't bothered if my dick worked or not as what was important was that I was around for many years to come (men and women are definitely wired differently lol ) My consultant recommended full removal but he was a surgeon, however I was told that whatever route I went down they was a high chance they could cure the cancer and after an appointment with an oncologist I have decided on the radiotherapy route. So far I have had something fit called a spaceOar to move the bowel away from the prostate to reduce the side effects and damage to the bowel from the radiotherapy and all of the planning has been done ready to start on the 18/1 with 7 sessions every other day. I did look at focal therapy and almost went that route but it would seem that you would need to be prepared for this procedure being repeated. The plus side is that the side effects seem to be a lot better. I noticed one of the guys suggested you put more details on here for your results as every treatment clearly will not suit everyone. There might be a good reason why removal is recomended and why they have not offered radiothereapy. I had the advantage of having time on my hands to make a decision as I have previously been under surveillance for the last 4 years and the cancer is fully contained. In my own case once I had decided on the route it was like the weight of the world was lifted but don't be pushed into any decision without asking loads of questions. I have had nothing but excellent medics to deal with who I couldn't fault on anything.

All the best

Edited by member 10 Jan 2021 at 09:17 | Reason: Not specified

User

Posted 10 Jan 2021 at 14:41

When I had my appointment with the oncologist who spent almost an hour with me discussing my case and all of the options (I also had a list of questions a mile long) I just felt very confident that radiotherapy was going to be just as effective as removal, I'm 63 and this was first spotted at 58/59 but it has been confirmed it is totally confined in the prostate. Grade 2 Cancer, T2 NO 50% max core involvment what ever all of that means lol. Logic told me to just get it removed but the oncologist said it was always possible that tissue could be left behind by surgery and the course I was going down was just effective infact I read somewhere that in the distant future Proton Beam may replace surgery. As for the spaceOar its needed to reduce the side effects but again I'm sure I have read somewhere that the NHS are not going to provide this after March because of the cost but I could be totally wrong on this.

Back to the side effects of Radiotherapy, before I had the appointment I had so many people tell me not to go for it and it would destroy my immune system etc etc but the onocologist totally put my mind at rest on that one. I also have a friend who is a chiropactor and he said he had many clients that had all gone through RT without any major issues. The thing is Mickey we are all different and also have different diagnosis, I'm the sort of person that needs to look into the whites of someones eyes that is giving me this information and then I go with my gut feel. As I have said before the preparation for this so far has been first class and I'm becomming totally fascinated with what they are doing. I even had my paper pants ripped off in an operating theatre by a nurse as the surgeon couldn't find a pair of scissors to cut the sides, so even at my age I have experienced something new as I've never had my pants torn off :-). I just have my fingers crossed that I have made the right decission which I feel I have and I will deal with everything else as it presents itself. I'm lucky that this is not going to kill me and recently a colleague of mines father in law broke a rib and after they had X rayed him and took bloods etc they discovered he had advanced prostate cancer and he had no idea :-(

Good Luck

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 10 Jan 2021 at 13:42

Bio, I'm in the exact same position, got told I had cancer 2/3 weeks after my 50th birthday. I have no symptoms so cant get my head around it. I'm unfortunately booked in for a prostectormy on 21st. Desperately looking for an alternative ( I've put £1000's worth of cannabis oil up my bum! All donated, I didn't pay!!!) But my psa has doubled & the cancer team say they go on the biopsy more than anything else & that was conclusive..... apparently! I've not heard of focal but really, I have to self isolate from Thursday & preop tomorrow! I've run out of time to do anything else. At least you got your head in the game & are able to look & think, I missed my chance. Good luck & check it all out if u got time, I wish I had been a bit more proactive.

User

Posted 15 Jan 2021 at 16:51

As a recent primary HIFU patient, I have been interested in the conversations and have read the studies referenced by Old Barry and Lyn. They are extremely upto date and useful. It’s only here from our ‘experts’ that I get to know where to find these studies.

Any doubts I have that I have had the right treatment has gone. This may be only in my case as the 2019 study points to HIFU best for older (I am 76), low risk who has a partial not whole gland HIFU.

The 2018 Imperial College results for HIFU compare very favourably as Barry has already said.

It is true that the rate of positive biopsy after HIFU from the October 2020 (Mao.,Chao) results of 1698 patients was 14%to 37.5%. However what pleases me is that they say after partial-gland HIFU, the mean PSA nadir was 1.9 to 2.7 and I have just received my 3 monthly post HIFU of 2.00 which I was not sure about but can now be relieved that I am in good company.

Bill

User

Posted 15 Jan 2021 at 19:32

Great result, Bill. In my mind, HIFU is positioned between active surveillance and the radical treatments - a good option for someone who might be suitable for AS or is just beyond the threshold and doesn't generally suffer from anxiety.

In all honesty, if I could turn back the clock I would have asked Stan to consider HIFU once he had point-blank refused to have RP or RT/HT - especially if we had known that his AS would not be correctly managed. He was a very laid back kind of guy and even if he had had to repeat the HIFU, he might still be with us.

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

User

Posted 15 Jan 2021 at 21:27

Sorry about stan

I was booked in for my prostectormy but it got cancelled, it's now back on but I have a consultation Monday night with the dr who does hifu, for me at 50 if I can save my penis for a few years a £13000 debt its worth it. I hope I'm eligible, I'll let you know.

All the information posted has been very helpful. I'll be re reading all this Monday night when I need to make a decision.

Edited by member 15 Jan 2021 at 21:30 | Reason: Not specified

User

Posted 15 Jan 2021 at 21:50

"I have seen you mention a PSA after treatment of 2.15 as a threshold or something, and wonder what that was. But probably nothing to do with HIFU."

After RT, a man still has a prostate and the healthy cells can replicate and regenerate so the accepted stance is that after successful RT the PSA shouldn't go higher than 2.0 plus the lowest reading the person has ever had (in the post you saw, the person had had a PSA reading of 0.15 while on HT).

In your case, there has been less damage to the prostate so it is expected that your 'healthy' PSA will be a bit higher than if it had all been zapped to a frazzle.

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

User

Posted 16 Jan 2021 at 05:00

Lyn makes a valid point in saying about the higher PSA level likely to be found after RT due to healthy or recovering cells producing PSA than with Prostatectomy. However, whereas RT damages some good cells all the way to the target, HIFU damages only the actual target area itself so there is going to be even more good cells remaining in the Prostate than with RT. It follows that PSA levels can be higher with HIFU.

It is most important that the HIFU probe which is located in the rectum is in a good position to focus on the tumour. A major study suggested that results were better where the cancer was in the Posterior than the Anterior zone.

As regard the question posed by Michael, I think each case has to be looked at very carefully. When diagnosed in late 2007 I had a T3a and it was thought RT would stand a better chance of dealing with this than surgery or HIFU. In the intervening years all treatments have improved, as have scans and biopsies but I nevertheless feel there is still a better chance of RT zapping any cancer cells on the point of escaping as it is difficult to know there disposition.. So the way I see it is that RT can go beyond where HIFU or the knife can but if you are prepared to pay for HIFU, it might work for you but if it doesn't, any escaping cancer cells might have migrated further, so any follow up RT then considered necessary might prove less effective. Even having surgery or RT now is not certain to eradicate your cancer.

I wish you well in making your decision and hope it works well for you.

Barry

User

Posted 16 Jan 2021 at 11:00

Thanks Barry. Yes not bothered now with my PSA result after HIFU. You have had both RT & HIFU so realise now why you have to watch your PSA more closely. By the way sent you a private message some time ago but your message box was full. Anyway seems more important to get the vaccine at the moment at our age.

It’s good advice you and Lyn have given Micheal. At his age it may not be wise to rush into a HIFU, especially if at £13000, it might have to be repeated. If I was 50 again I would certainly wait for a more permanent solution.

Bill

User

Posted 16 Jan 2021 at 17:26

Hi Michael

That’s good it’s on again and you have the choice. Glad you can see humour at this difficult time for you. The reference of course was to point out that HIFU may not give you peace of mind for very long.

Best regards

Bill

User

Posted 16 Jan 2021 at 18:11

You've got to laugh bill or what's the point. I'm glad I have options, so gutted there all horrible decisions but as my wife says the bad bits happened, I have cancer, now just what to do about it.

We put so much trust in the experts & what they say, I've not a clue what to do apart from I have to do something, hifu seems to have the least side effects & they rang Monday when I had no treatment plan in place, it felt like I was supposed to do it! Let you know after Monday.

User

Posted 19 Feb 2021 at 23:11

Well I went for my focal therapy on Wednesday 3rd February in Harley street hospital! Very me!! £13995 & I left with Tesco drugs!! Paracetamol ;-))

I'd not had any symptoms it was the last thing I said b4 they shut me up & put me to sleep.....

I woke with a catheter! Guess I must have had it then.

I was taking 24 tablets a day for the 1st week & had the catheter in. 4 days after the treatment I woke with a semi & the catheter in, ouch! But I took that as a good sign! The Thursday after, 8 days later I had the catheter out & stopped most of the tablets, I leaked for the day the catheter was taken out but woke Friday morning and haven't leaked since. I checked out the erections as soon as the catheter was out & it's fine, not as hard as before but it's still sore so give it a chance to heal!! My cock still aches but so far so good. If this has killed my cancer & I recover back to before this will be a 10 week ( from diagnosis to treatment!) Experience I'll think back to later on & be glad I found that miracle cure before I had the prostectormy. Fingers crossed

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

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User

Posted 01 Jan 2021 at 19:49

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

User

Posted 02 Jan 2021 at 22:08

Originally Posted by: Online Community Member

HIFU doesn't have fantastic results as a primary treatment

Do you have any data on that, Lyn? Several recent papers seem to indicate that results are comparable to radical prostatectomy and radiotherapy. It is inevitably short-term because the treatment hasn't been available long enough to track beyond ~10 years?

User

Posted 02 Jan 2021 at 22:52

It has been available in the UK since 2002 but the outcomes in terms of progression free status at 5 and 10 years are not great and I guess the fact that 18 years on, it is still not an established radical option on the NHS speaks volumes. The recent papers I have seen have either been funded by interested parties and are not peer reviewed OR they do not separate out the data for HIFU as a salvage rather than primary treatment or indicate whether the procedure was for a first, second or third attempt. ED is still a bit of a problem and the risk of fistula is higher than might be considered acceptable by many patients. There is no doubt that HIFU is an excellent salvage treatment for some people.

HIFU has been available in Europe for rather longer, particularly in Germany, and no doubt one of the members who had HIFU as a salvage treatment can give you more info.

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

User

Posted 03 Jan 2021 at 16:28

The biggest disadvantage with HIFU is that it is a niche form of treatment where the cancer is confined to the Prostate and preferably small in volume and limited in deposition. Specialists will readily admit that there becomes a point where surgery or RT becomes more appropriate. There are situations where it is completely successful done once or repeated but otherwise it is highly likely to set the cancer back for a time so at some point a decision may have to be taken on whether to remove the Prostate or treat it and any other treatable but affected areas with RT.

The biggest advantage is that the treatment is quickly accomplished with fairly short recovery time and generally less severe side effects than other radical treatments. Risk of a Fistula is extremely very rare now. The lady surgeon who administered my HIFU (as a salvage procedure for failed RT), is reported as not having one Fistula case in the several years and hundreds of HIFU procedures she has done. All forms of treatment have been refined or improved over recent years including HIFU. There is now a different method of administering HIFU called TULSA PRO that looks promising but I don't think it is available in the UK yet and only time will show how effective an alternative this is to the usual HIFU.

This is an interesting interview although I don't understand the reason for the large gaps in the text. https://www.canceractive.com/article/professor-mark-emberton-on-high-intensity-focussed-ultrasound-or-hifu

Edited by member 03 Jan 2021 at 16:33 | Reason: to highlight link

Barry

User

Posted 03 Jan 2021 at 17:00

Hhhhmm - Prof E is one of our greatest leading lights on urological cancers but this article was published in 2011, is aimed at an American readership and promotes his private practice rather than NHS work. It is also worth noting that his second set of trial data was published in 2013 - and still HIFU is not a mainstream option.

As I already said, I think that if a man has either the money or the blessing of being offered it on the NHS, has a small, clearly delineated tumour and is comfortable with the possibility of needing to repeat it in the future, it seems a no-brainer to give HIFU a go. But anyone who would be distressed by a recurrence should think very carefully.

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

User

Posted 03 Jan 2021 at 17:56

Originally Posted by: Online Community Member

Could you possibly post references to some studies showing poor outcomes at 5 and 10 years?

I imagine you will inevitably get conflict of interest sometimes e.g. Sonacare sponsored the research behind the 2018 paper in European Urology which indicated that primary focal therapy for select Gleason 6-9 patients was as effective as surgery or radiotherapy in the medium term. However, that research was also funded by the Medical Research Council, and published in an international journal with a high impact factor. That suggests the methodology was robust, and that it would be difficult for Sonacare to manipulate the data on collection? As well as UCL and Imperial, there was significant NHS involvement in the study.

Key players like Hashim Ahmed are highly respected researchers. Ahmed also pioneered the use of multi-parametric MRI with biopsies.

User

Posted 03 Jan 2021 at 19:52

Thanks for that, the interview was an interesting read.

All those non-breaking spaces looks like they did the text in Word.

User

Posted 04 Jan 2021 at 00:01

"LynEyre;250642]Hhhhmm - Prof E is one of our greatest leading lights on urological cancers but this article was published in 2011, is aimed at an American readership and promotes his private practice rather than NHS work. It is also worth noting that his second set of trial data was published in 2013 - and still HIFU is not a mainstream option."

Yes, shows how advanced Prof E's thinking was and remains the case. He naturally tailors his interviews to his audience whether it be UK or International, Clinicians or Lay persons/Groups but the message is basically the same. Many consultants do private work as well as for the NHS. Whilst a patient at UCLH, I had a one to one discussion with him about Focal Therapy in general and my case in particular and it didn't cost me a penny. Why would he try to promote HIFU on the NHS when other than for private patients NICE have restricted it's use to trials and there is no shortage of referrals for these?

The reluctance of NICE to approve HIFU because of lack of long term analysis is obviously one of the reasons it has not become main stream. Additionally, surgeons who have studied hard to become proficient in removing the Prostate directly and some also with the robot, are not lightly going to change to a less demanding procedure, especially one that is not supported by NICE for the NHS. It's also the case that the UK is slow to accept change. An example of this is Proton Beam which although having more success in some other cancers, than PCa has been available in the USA, Germany, France Italy and many other countries for many years. Indeed the clinicians in the UK even tried to stop Alesha King from have life saving Proton Beam treatment in Prague which he had after his parents were released from a European Arrest Warrant. So it's no surprise to me that we lag behind other countries when it comes to Focal Therapy amongst other things.

This is an easier to follow video :- https://www.youtube.com/watch?v=2kRTwBJ8ehY

Edited by member 04 Jan 2021 at 00:10 | Reason: Not specified

Barry

User

Posted 10 Jan 2021 at 01:06

That was very interesting, I wonder how much it costs? I have sent them an e-mail, I'd fit in to the category that can have focal therapy from the sounds of it. I'm booked in for a prostectormy on 21st!

User

Posted 10 Jan 2021 at 09:11

All the best

Edited by member 10 Jan 2021 at 09:17 | Reason: Not specified

User

Posted 10 Jan 2021 at 13:26

What made you choose radiotherapy or removal?? I've read about the space aor thing but was worried about damage to surrounding areas & being 50 I dont want it to give me cancer at 60, massive side effect apparently.

User

Posted 10 Jan 2021 at 13:42

User

Posted 10 Jan 2021 at 14:04

I was looking for your pros & cons info & sheet you posted on here but I cant find it! Can you direct me to it plz?

User

Posted 10 Jan 2021 at 14:05

Sorry, that was to lyne

User

Posted 10 Jan 2021 at 14:41

Good Luck

User

Posted 10 Jan 2021 at 21:03

Originally Posted by: Online Community Member

Could you possibly post references to some studies showing poor outcomes at 5 and 10 years?

Sorry - delayed response.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6179019/

https://link.springer.com/article/10.1007/s11934-011-0184-2

https://www.urotoday.com/conference-highlights/eau-robotic-urology-section/erus-2018/106785-erus-2018-a-pathological-landscape-of-recurrence-after-focal-hifu-for-prostate-cancer-a-high-rate-of-adverse-findings-at-salvage-prostatectomy-and-limited-sensitivity-of-mri.html

https://www.renalandurologynews.com/home/news/urology/prostate-cancer/long-term-prostate-cancer-outcomes-worse-with-hifu-vs-rp/

https://journals.lww.com/md-journal/fulltext/2020/10090/the_primary_treatment_of_prostate_cancer_with.65.aspx

There is also anecdotal info if you want it - the very small number of members here who have had primary HIFU some time ago did not achieve remission; those who had salvage HIFU have almost all seen further recurrence I think. On the other hand, if you are a member of YANANow, there are a number of men there who appear to have had great outcomes from HIFU (although I think the vast majority were very early (T1a) diagnoses)?

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

User

Posted 10 Jan 2021 at 21:13

Originally Posted by: Online Community Member

I was looking for your pros & cons info & sheet you posted on here but I cant find it! Can you direct me to it plz?

My apologies Mickey - I can't find the pros & cons sheet on the website either. It used to be part of the toolkit :-( I notice though that when you download each of the information sheets (about the different treatments) they do still list the advantages / disadvantages of each treatment.

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

User

Posted 10 Jan 2021 at 21:17

Originally Posted by: Online Community Member

was worried about damage to surrounding areas & being 50 I dont want it to give me cancer at 60, massive side effect apparently.

No - radiotherapy increases the risk of you developing bowel cancer from around 6.6% to around 8% - that's not massive.

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

User

Posted 11 Jan 2021 at 05:23

Extract from report on largest and most recent study on HIFU https://www.sciencedaily.com/releases/2018/07/180705114140.htm

'The scientists also tracked the number of patients who needed further treatment following HIFU, (such as surgery or radiotherapy), to treat any cancer cells that had returned. They found 10 per cent of patients needed further treatment by five years, which is comparable to number of patients needing further treatment after surgery or radiotherapy (5-15 per cent)'

We will have to see what the 10 year analysis shows with the Sonarblate which now seems to be preferred in the UK to the Ablertherm referred to in analysis in earlier studies. Also, in these other studies not all candidates may have been suitable candidates for HIFU. Furthermore, there were more cases where HIFU was directed at the whole gland whereas now it is more used only for 'significant' tumours which increases its effectiveness.

A crucial aspect is that men are carefully selected for HIFU because the cancer can become so difficult to deal with through location, volume or intensity that more radical treatment becomes more appropriate. But for suitable men, the overall possibility of a milder treatment that can be repeated or in need followed by more radical treatment, coupled with the less severe side effects of HIFU could make it a preferable option.

Edited by member 11 Jan 2021 at 06:33 | Reason: to highlight link

Barry

User

Posted 15 Jan 2021 at 16:51

Any doubts I have that I have had the right treatment has gone. This may be only in my case as the 2019 study points to HIFU best for older (I am 76), low risk who has a partial not whole gland HIFU.

The 2018 Imperial College results for HIFU compare very favourably as Barry has already said.

Bill

User

Posted 15 Jan 2021 at 19:32

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

User

Posted 15 Jan 2021 at 21:04

Thanks Lyn. Sorry about Stan.

Yes, I am hopeful my 2nd quarterly PSA test (due March) will not show much of an increase and by the end of the year no doubling. If COVID is still around would not wish to have another HIFU. I have seen you mention a PSA after treatment of 2.15 as a threshold or something, and wonder what that was. But probably nothing to do with HIFU.

All information is helpful and I and I am sure others are grateful for all contributions.

Bill

User

Posted 15 Jan 2021 at 21:27

Sorry about stan

All the information posted has been very helpful. I'll be re reading all this Monday night when I need to make a decision.

Edited by member 15 Jan 2021 at 21:30 | Reason: Not specified

User

Posted 15 Jan 2021 at 21:42

If you are persuaded to shell out 13k for HIFU with a T3, the doctor needs reporting. No point saving your penis if you end up spending the rest of your life on hormones and can't remember what to do with it or why it ever mattered!

Are you sure it's a T3???

Edited by member 15 Jan 2021 at 21:42 | Reason: Not specified

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

User

Posted 15 Jan 2021 at 21:50

"I have seen you mention a PSA after treatment of 2.15 as a threshold or something, and wonder what that was. But probably nothing to do with HIFU."

In your case, there has been less damage to the prostate so it is expected that your 'healthy' PSA will be a bit higher than if it had all been zapped to a frazzle.

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

User

Posted 16 Jan 2021 at 00:41

Its says theres a bulge in the capsule that indicates early T3, on left is T2.

What's your thoughts??

User

Posted 16 Jan 2021 at 05:00

I wish you well in making your decision and hope it works well for you.

Barry

User

Posted 16 Jan 2021 at 11:00

Bill

User

Posted 16 Jan 2021 at 17:03

" if I was 50 again I'd wait for a more permanent solution"

I must admit that made me chuckle! My operation is book on for this Thursday again, they spoke to the surgeon who said it couldn't wait. I've a consultation Monday night with the hifu doctor & I'll have to make a decision after that. Let you know.

Edited by member 16 Jan 2021 at 17:05 | Reason: Not specified

User

Posted 16 Jan 2021 at 17:26

Hi Michael

Best regards

Bill

User

Posted 16 Jan 2021 at 18:11

You've got to laugh bill or what's the point. I'm glad I have options, so gutted there all horrible decisions but as my wife says the bad bits happened, I have cancer, now just what to do about it.

User

Posted 17 Jan 2021 at 20:06

It’s been interesting reading other’s experiences and thank you all for contributing

Mickey23 , this is a message for you

Am sorry I wasn’t able to reply direct to you . Seems that because am new , private message doesn’t go through until I’ve posted more !

Anyway back to your question about whether I’ve come to a decision between HIFU or surgery, well I chose HIFU

But since I’ve been told I’ve got cancer , that is a week before New Year, I sat listening to doctors for a very longtime

Not that anything was going in , as soon as you hear cancer , brain goes in neutral

Afterwards doctors gave me options HIFU , surgery and radiotherapy but he there and then said radiotherapy isn’t for me

So I went home with the other 2 options

Doctors was supposed to call me and get my decision but am still waiting for a call

I did call my support worker but she reassured me and said they will call

Am still waiting so I don’t know much to be honest

Good luck with yours as well , I will keep you updated

User

Posted 17 Jan 2021 at 20:39

Hi polar bear,

What was your psa, T stage and gleason, and was there any other information like percent cancer in prostate? Is the HIFU being offered on the NHS?

I've already had my treatment, but the above information can help those who come after us.

Dave

User

Posted 11 Feb 2021 at 21:43

I very much appreciate all the contributions to this post. I am 58, T1, on AS for a year. Diagnosis 18 months ago. PSA has risen since then from 7.2 to 11.2 and fluctuated in between. I have 2 small tumours and precancerous cells diagnosed in one biopsy. I was due a second MRI around September last year - still waiting.

With the rising PSA, I am looking at options, especially HIFU. I live in the North of Scotland but my father lives in Reading so I could stay there (after Covid). I think I will opt on to the waiting list for surgery. When I spoke with the consultant the waiting list was about 6 months, it will be considerably longer now.

Good luck Mickey23. I hope it goes well.

Tim

Edited by member 11 Feb 2021 at 21:44 | Reason: Not specified

User

Posted 11 Feb 2021 at 23:25

Overall, cancer patients have not been so severely affected as patients with other problems although the situation is worse in some areas than others. I rang UCLH in London to check my MRI scan was likely to go ahead this month before booking transport.They told me that their cancer patients were little affected as there are quite a number of private hospitals in London able to help take the non cancer patients. So as in so many other things, a bit of a postcode lottery.

Barry

User

Posted 19 Feb 2021 at 23:11

Well I went for my focal therapy on Wednesday 3rd February in Harley street hospital! Very me!! £13995 & I left with Tesco drugs!! Paracetamol ;-))

I'd not had any symptoms it was the last thing I said b4 they shut me up & put me to sleep.....

I woke with a catheter! Guess I must have had it then.

User

Posted 19 Feb 2021 at 23:31

Thanks for the update. Hope it all goes well. Glad you're already getting erections and not leaking much. I guess hifu is about as minimally invasive as you can get, and I always think that's a good idea.

Dave

User

Posted 20 Feb 2021 at 10:47

Sounds very positive, hopefully it's done the job.

Was it whole-gland ablation?

User

Posted 20 Feb 2021 at 13:47

It was focal therapy, I had 85% on my right hand side & 1% on the left, they ( fingers crossed) took all the 85% & the 1% on the left not worth talking about, the checks most of us our on now means if we get cancer come back anywhere they should fine it early.

But I'm hoping 1 year MRI, that's the 1st time they can see inside me & see if they got it all & that's me clear of cancer.

But focal over prostectormy for me & if your consultant doesn't tell you about it if your eligible theres something seriously wrong, mine didn't. I feel I got very lucky my prostectormy got cancelled.

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

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

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