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User

Posted 11 Oct 2023 at 13:30

There haven’t been very many recent posts about HIFU as a primary source of treatment as opposed to salvage treatment. I have chosen to go down the HIFU path so in case any one else is just starting and considering treatment options, I will document my path.

A brief summary so far is as follows with no names of surgeons or hospitals involved:

Yearly blood tests since being a kidney donor in 2013

2022 PSA 3.04

May 2023 PSA 11.4, second PSA test requested

Jun 2023 PSA 9.47

GP started 2 week fast track with local urology dept

23 Jun First consultation with surgeon, referred for MRI

27 Jun MP MRI

13 Jul appointment with Nurse practitioner to hear MRI results, recommended for biopsy

1 Aug trans perennial biopsy with different surgeon, recommended for ultrasound scan

19 Aug ultrasound scan of bladder, testicles and 1 remaining kidney and site of previous kidney

24 Aug appointment with Nurse Practitioner to hear results: confirmed PCa Gleason score of 3+4, T2 N0, 20 cores, only 2 had found cancerous cells (second smaller lesion was 3+3), prostate volume 37 mls. She briefly summarised the 3 suggested courses of treatment (RP, RT/brachytherapy or AS). Met MacMillan support nurse.

19 Sep treatment consultation with first consultant to review options. He considered RP and RT were overkill, suggested AS or LDR Brachytherapy. Disparaging about HIFU.

22 Sep decided I wanted to consider HIFU so phoned urology dept to request a referral on NHS for HIFU with neighbouring city hospital

26 Sep second treatment consultation this time with oncologist who confirmed suitability of AS or LDR Brachytherapy. Also disparaging about HIFU.

02 Oct phoned NHS HIFU hospital to confirm they had received my referral, they hadn’t. Chased up. Also found time scales for NHS HIFU treatment: 6 weeks to meet consultant, 8 weeks to MDT, 8 weeks till treatment.

03 Oct heard that NHS HIFU hospital had now received my referral.

Called Private HIFU surgeon’s secretary, booked consultation in 6 days with likely treatment in 4-5 weeks (if suitable for treatment).

9 Oct consultation with surgeon for Private HIFU treatment. Confirmed my suitability. Thorough explanation of pros and cons. Agreed to go ahead. Waiting for costs and choice of dates.

In summary I would suggest anyone considering treatment does lots of research of all options, listens to podcasts, watches clips on the wonder web and does not accept surgeons’ recommendations without considering how up-to-date they are with the facts. Then consider his own diagnosis, his own current and projected quality of life and the time scale of treatment.

Simon

User

Posted 11 Oct 2023 at 13:30

There haven’t been very many recent posts about HIFU as a primary source of treatment as opposed to salvage treatment. I have chosen to go down the HIFU path so in case any one else is just starting and considering treatment options, I will document my path.

A brief summary so far is as follows with no names of surgeons or hospitals involved:

Yearly blood tests since being a kidney donor in 2013

2022 PSA 3.04

May 2023 PSA 11.4, second PSA test requested

Jun 2023 PSA 9.47

GP started 2 week fast track with local urology dept

23 Jun First consultation with surgeon, referred for MRI

27 Jun MP MRI

13 Jul appointment with Nurse practitioner to hear MRI results, recommended for biopsy

1 Aug trans perennial biopsy with different surgeon, recommended for ultrasound scan

19 Aug ultrasound scan of bladder, testicles and 1 remaining kidney and site of previous kidney

24 Aug appointment with Nurse Practitioner to hear results: confirmed PCa Gleason score of 3+4, T2 N0, 20 cores, only 2 had found cancerous cells (second smaller lesion was 3+3), prostate volume 37 mls. She briefly summarised the 3 suggested courses of treatment (RP, RT/brachytherapy or AS). Met MacMillan support nurse.

19 Sep treatment consultation with first consultant to review options. He considered RP and RT were overkill, suggested AS or LDR Brachytherapy. Disparaging about HIFU.

22 Sep decided I wanted to consider HIFU so phoned urology dept to request a referral on NHS for HIFU with neighbouring city hospital

26 Sep second treatment consultation this time with oncologist who confirmed suitability of AS or LDR Brachytherapy. Also disparaging about HIFU.

02 Oct phoned NHS HIFU hospital to confirm they had received my referral, they hadn’t. Chased up. Also found time scales for NHS HIFU treatment: 6 weeks to meet consultant, 8 weeks to MDT, 8 weeks till treatment.

03 Oct heard that NHS HIFU hospital had now received my referral.

Called Private HIFU surgeon’s secretary, booked consultation in 6 days with likely treatment in 4-5 weeks (if suitable for treatment).

9 Oct consultation with surgeon for Private HIFU treatment. Confirmed my suitability. Thorough explanation of pros and cons. Agreed to go ahead. Waiting for costs and choice of dates.

In summary I would suggest anyone considering treatment does lots of research of all options, listens to podcasts, watches clips on the wonder web and does not accept surgeons’ recommendations without considering how up-to-date they are with the facts. Then consider his own diagnosis, his own current and projected quality of life and the time scale of treatment.

Simon

User

Posted 12 Oct 2023 at 00:34

I am sure everybody wishes your treatment is successful. You are right that not many men have HIFU and even fewer as a primary treatment, so details of your progress will be of interest, particularly as others may be considering it.

Barry

User

Posted 13 Oct 2023 at 10:05

My story is very similar to Sam8888. I'm in the South of UK. Now 69.

Upon diagnosis (Oct 2021) I was told by the NHS urologists that nothing either than prostate removal or Hormone/Radiotherapy were options (and I did ask). Gleason score 3+4. Lesions both sides of prostate.

Researched PCUK website and learned of HIFU. Had treatment privately in London as day surgery. Met a chap from Nottingham who'd had same treatment, same day, whose story was identical to mine, not told of HIFU etc.

1st op was Feb 2022, 2nd August 2022 - 2 ops necessary as they couldn't treat both sides at once due to potential swelling etc.

I later asked the NHS urologist why is wasn't mentioned, even if not available under NHS (I've since found that it is). He was dismissive of it and said it hadn't been around longer enough to prove its efficacy. I believe it was ok'd by NICE in 2016, has been in Europe for 20 years plus and thousands of ops have been performed in the US.

I am certain that even today men are being advised to have prostate removal, with all the life changing effects, that would be suitable for HIFU or other treatments instead and frankly, I am appalled. Fortunately, I researched. Not everybody does. We were taught to believe what the doctor tells you. I'm now on 6 month PSA tests. The last MRI in April was normal

User

Posted 26 Oct 2023 at 16:07

Thanks very much, Simon. Yes, our cases sound very similar. I too have read a lot about it, including - like you - Dr Patrick Walsh's excellent volume (and I have read one or two reviews of the latest edition, which came out on 19th October) and spoken to a number of people who have had different treatments. I also joined the North Hants prostate group (and have been to two sessions) and 'attended' two online sessions of the Prostate Cancer UK Active Surveillance group. I almost feel that I have been researching for too long now (!) and I want to get on and make a decsion. I will be very interested to hear how it goes for you (if you feel like saying). I hope all goes well on 16th November.

User

Posted 17 Nov 2023 at 17:03

HIFU UPDATE

Yesterday I had my HIFU procedure. The private hospital is 90 minutes away from where we live; getting there was easy but parking a nightmare. Arrived at 11.00. Checked in, usual paperwork/allergies/previous medical history etc all triple checked, but in a friendly and efficient manner. Anaesthetist and surgeon both separately went through checks and surgeon pointed out all possible risks (to the horror of my wife)! He also realistically pointed out that maybe 30% of HIFU patients may need further surgery within a few years.

The hemi-ablation of my Gleason 3+4 and my Gleason 3+3 on the posterior left of the prostate lasted about 2 hours under GA and I was painless and symptom free before, a day later I still am both. The only tedious bit is (as many have pointed out) the catheter but I guess I just have to get used to it. My overnight catheter bag was full to the brim this morning!
I had a bath this morning (in our cottage we have no shower) whilst wearing the catheter and that seemed to be ok. Advice taken from the forum about clothing and I bought a loose fitting tracksuit-bottom to wear which both hides but contains my apparatus!
I was told exercise was good and I should aim to walk a mile by the 5 day point when the catheter comes out. As I normally walk 6 miles before breakfast, I felt this was rather un-ambitious so my wife and I had a walk today exactly 24 hours after the procedure and did a slow mile together.

I was briefed about the removal of the catheter and instead of driving back 90 minutes to the hospital for them to do it, I have chosen to do it myself next week. I was also briefed about self catheterisation in case I have temporary retention and given a pack of 10 single use catheters for any occasion over the next few months when I cannot pee properly. They also gave me 5 Tena pads for the first few days without the catheter. I write about all of this completely confidently (but don’t actually feel it at all! Don’t tell anyone!)

So far, I have been impressed by the professionalism of possibly the best HIFU chap in the country and by the friendliness and care of his team. I hope when and if I can look back on this in a few years I will still feel the same! I note that if I had been waiting to see the same HIFU surgeon through the NHS, I would still be waiting one more week for the initial consultation and about 4 months for the same procedure. It was my choice to raid our meagre piggy bank.

As in all the other helpful experiences of those in the PCa club, I write this not as advice to anyone to persuade them to follow this path, but rather that my experience may help them choose which is the best path for them. I also would welcome any advice from the more experienced club members if anything I am doing seems to be patently wrong!

Simon

User

Posted 14 Dec 2023 at 12:45

Hi Jonathan, update as requested.
Four weeks to the day since my HIFU procedure. For the first 5 days I was wearing a catheter which was frankly tedious, but necessary. On day 5 I then followed Youtube and other medical instructions and removed the catheter myself at home. Very tiny discomfort as I pulled it out but nothing to complain about. I was concerned that I would not be able to wee properly but two hours later I was back to normal and have been ever since. Slight traces of blood in the wee but that soon disappeared. I must admit to being very glad to get rid of the catheter.
I had been given incontinence pads and self catheterisation stuff in case I suffered any after effects but so far have not needed either.
It all seems like a dream now as I have almost no side effects and consider myself to be very fortunate that my surgeon was able to catch the PCa early. My daily 6 mile walks pre-breakfast were resumed on day 6 with a couple of longer walks (10-12 miles) thrown in for good measure once a week and when I remember I try to do the kegel exercises (I do recommend doing these as often as you can before and after any treatment.)

I keep reminding myself that these are early days and I have no real idea if the cancer has been ablated successfully. I will have my PSA tested at the 3 month stage and have yet to see if this can be done by my local medical centre instead of having to drive 90 minutes to the private hospital. Likewise my first actual 3 month follow up with the surgeon based on these PSA results should be a zoom call rather than this long journey again. More updates to follow after these 3 monthly tests.

Fingers crossed!

Simon

User

Posted 13 Oct 2023 at 11:54

Think this a good presentation on Focal Therapy. (As far as I am aware, FLA, Focal Laser Ablation, is not available in the UK as somebody I know of researched it and had it privately in the USA). I don't think it mentions that HIFU, and possibly other forms of Focal Treatment can be used as salvage treatment for failed RT. In the UK this is the most used reason for it, although although use as a primary treatment for men who meet Focal Treatment criteria is increasing. https://www.youtube.com/watch?v=cd_t0KlCJh4

There are probably several reasons why Focal Treatment has not been taken up so widely. These include the fact that Hospitals have had experience of treating with Surgery and one of the forms of RT for many years and don't look to newer alternatives in many cases. They already have expensive RT machines and highly skilled doctors using surgery who want to use that skill rather than use a Focal Treatment that is less suitable for a wider range of cases. I have also seen it reported that Focal Treatment does not pay so well, so another disincentive.

I do agree that it makes sense to research all options because there are so many pros and cons for various treatments and men can evaluate these differently. Certainly, many men are not told of all that is available.

Edited by member 13 Oct 2023 at 11:55 | Reason: to highlight link

Barry

User

Posted 13 Oct 2023 at 17:24

A few months ago I was talking to a urologist who had performed many prostate procedures including both HIFU and radical 'da Vinci' prostatectomy. I asked him why so many of his fellow surgeons disapprove of HIFU, even for cancer localised to just one part of the prostate.

His answer was simple. He said "professional rivalry".

I suspect there is truth in that, as well as the more subtle explanation given by Old Barry.

Having said that, I'm aware that HIFU is sometimes oversold as 'non invasive' as if it's just a minor procedure like getting a small wound stitched or whatever. For me, it turned out to involve a lot of anxious waiting and hassle, followed by a serious problem with acute urine retention requiring emergency re-catheterisation at my local A&E. It was several weeks before my waterworks were anywhere near back to normal. Apparently the high energy input into the prostate caused inflammation/expansion which obstructed urine flow.

I get the impression that retention may be a more frequent complication from HIFU than incontinence, whereas with prostatectomy it's the other way round.

The standard NHS TWOC - trial without catheter - doesn't really address this, as many men can pee during the day when their catheter has only just been removed, but at night the urethra seizes up, or maybe the inflamed prostate presses on it more at night than during the day.

Still, if the HIFU has fully disposed of my cancer - which I don't know yet - I'll be glad I didn't have to endure full prostatectomy. ( Or the wider effects of the prolonged hormone treatment which seems to be compulsory with radiotherapy.)

User

Posted 01 Feb 2024 at 20:32

Hi

3 years on from a primary HIFU I have today been told my PSA is still under 1.

This is good as one side was not touched and would therefore be producing psa

Having had no after affects what so ever, following the HIFU, I am celebrating having done the right thing for me personally. See my bio , I am 79 and therefore have a different view of the possibility of having to have a repeat etc.

Good luck to those just had it or seeking HIFU!

Bill 2

Show Most Thanked Posts

User

Posted 12 Oct 2023 at 00:34

I am sure everybody wishes your treatment is successful. You are right that not many men have HIFU and even fewer as a primary treatment, so details of your progress will be of interest, particularly as others may be considering it.

Barry

User

Posted 13 Oct 2023 at 10:05

My story is very similar to Sam8888. I'm in the South of UK. Now 69.

Upon diagnosis (Oct 2021) I was told by the NHS urologists that nothing either than prostate removal or Hormone/Radiotherapy were options (and I did ask). Gleason score 3+4. Lesions both sides of prostate.

Researched PCUK website and learned of HIFU. Had treatment privately in London as day surgery. Met a chap from Nottingham who'd had same treatment, same day, whose story was identical to mine, not told of HIFU etc.

1st op was Feb 2022, 2nd August 2022 - 2 ops necessary as they couldn't treat both sides at once due to potential swelling etc.

I later asked the NHS urologist why is wasn't mentioned, even if not available under NHS (I've since found that it is). He was dismissive of it and said it hadn't been around longer enough to prove its efficacy. I believe it was ok'd by NICE in 2016, has been in Europe for 20 years plus and thousands of ops have been performed in the US.

I am certain that even today men are being advised to have prostate removal, with all the life changing effects, that would be suitable for HIFU or other treatments instead and frankly, I am appalled. Fortunately, I researched. Not everybody does. We were taught to believe what the doctor tells you. I'm now on 6 month PSA tests. The last MRI in April was normal

User

Posted 13 Oct 2023 at 11:54

Think this a good presentation on Focal Therapy. (As far as I am aware, FLA, Focal Laser Ablation, is not available in the UK as somebody I know of researched it and had it privately in the USA). I don't think it mentions that HIFU, and possibly other forms of Focal Treatment can be used as salvage treatment for failed RT. In the UK this is the most used reason for it, although although use as a primary treatment for men who meet Focal Treatment criteria is increasing. https://www.youtube.com/watch?v=cd_t0KlCJh4

There are probably several reasons why Focal Treatment has not been taken up so widely. These include the fact that Hospitals have had experience of treating with Surgery and one of the forms of RT for many years and don't look to newer alternatives in many cases. They already have expensive RT machines and highly skilled doctors using surgery who want to use that skill rather than use a Focal Treatment that is less suitable for a wider range of cases. I have also seen it reported that Focal Treatment does not pay so well, so another disincentive.

I do agree that it makes sense to research all options because there are so many pros and cons for various treatments and men can evaluate these differently. Certainly, many men are not told of all that is available.

Edited by member 13 Oct 2023 at 11:55 | Reason: to highlight link

Barry

User

Posted 13 Oct 2023 at 13:03

Something that concerns me about focal therapies and Active Surveillance is just how accurately we diagnose the grade and staging of prostate cancer in the first place. After prostatectomies, some 40% of diagnosis are changed, usually upwards.

Focal therapy centres will often repeat scans to get better images, but it does seem to me both these treatments are taken on a bit in the dark and that we need to be looking for more accurate diagnosis than currently exist to justify them.

User

Posted 13 Oct 2023 at 17:24

A few months ago I was talking to a urologist who had performed many prostate procedures including both HIFU and radical 'da Vinci' prostatectomy. I asked him why so many of his fellow surgeons disapprove of HIFU, even for cancer localised to just one part of the prostate.

His answer was simple. He said "professional rivalry".

I suspect there is truth in that, as well as the more subtle explanation given by Old Barry.

Having said that, I'm aware that HIFU is sometimes oversold as 'non invasive' as if it's just a minor procedure like getting a small wound stitched or whatever. For me, it turned out to involve a lot of anxious waiting and hassle, followed by a serious problem with acute urine retention requiring emergency re-catheterisation at my local A&E. It was several weeks before my waterworks were anywhere near back to normal. Apparently the high energy input into the prostate caused inflammation/expansion which obstructed urine flow.

I get the impression that retention may be a more frequent complication from HIFU than incontinence, whereas with prostatectomy it's the other way round.

The standard NHS TWOC - trial without catheter - doesn't really address this, as many men can pee during the day when their catheter has only just been removed, but at night the urethra seizes up, or maybe the inflamed prostate presses on it more at night than during the day.

Still, if the HIFU has fully disposed of my cancer - which I don't know yet - I'll be glad I didn't have to endure full prostatectomy. ( Or the wider effects of the prolonged hormone treatment which seems to be compulsory with radiotherapy.)

User

Posted 26 Oct 2023 at 12:13

Hi Steve 1 Many thanks for the account of your HIFU experience. I am very interested in that as I am trying to decide which treatment to go for. My stats are: I am 70; latest PSA: 3.8; Gleason: 3 - 4 (21 cores taken, 4 were 3 and one was 4) ; prostate volume 30cc. The cancer is on one side of the prostate. I am homing in on HIFU (in Southampton) or brachytherapy (in Guildford). I have met the consultant re HIFU (they only do about one a month in Southampton) and am going to Guildford (where they do up to 12 brachytherapy procesures a week) for a first discussion on Tuesday, 31st October. I like the sound of HIFU due to the lesser side effects (apparently) but I haven't really come across anyone who had HIFU more than a year ago...hence my interest in your situation. I get the impression that, with HIFU, you have to be prepared to go back for another session after about five years (but then this applies to some of the other treatments too). I do have some urinary problems (getting up during the night, urgency). How has the whole thing been for you since the procedure...would you recommend HIFU ?

Edited by member 26 Oct 2023 at 15:55 | Reason: Not specified

User

Posted 26 Oct 2023 at 13:01

Hi Jonathan,

your stats, age, location are all similar to mine, and I now have a firm date (16 Nov) for my private HIFU treatment in Southampton. (I don’t have a cost yet though, I gather that that will arrive a week before treatment!) (NHS HIFU would be in about 4-5 months)

Two things I have learned over and over again in this unwelcome journey are: firstly with our sort of urinary symptoms and Gleason stage/ size of prostate/ location of lesion, there is no immediate rush. Although I certainly just want the thing out, it is unlikely to do anything over the next few weeks, (but I didn’t want to wait 5 months).

The second thing is to be armed with knowledge and so I have listened to podcasts galore, I tried some American podcast this morning on my daily walk; I have read the book (I bought a second hand copy of Dr Patrick Walsh’s “Guide to Surviving Cancer”, which though dated gives a very good background to the whole topic and I think a revised copy might be out any day now) and I have watched copious YouTube clips.

Both these points helped me to decide that for me the possibility of removing the blessed thing with minimal if any side effects, outweighed the possibility that in 3-5 years I might have to through it all again, or use whatever the latest treatment would be then.
I felt that brachytherapy was my full back option, but its almost guaranteed slight side effects compared to no side effects with HIFU, swayed me towards HIFU.
Everyone is different on their PCa path and so my solution would be unlikely to fit someone else’s predicament. I just count myself fortunate that my PCa has been discovered early enough for me to have such favourable choices.

Simon

User

Posted 26 Oct 2023 at 16:07

Thanks very much, Simon. Yes, our cases sound very similar. I too have read a lot about it, including - like you - Dr Patrick Walsh's excellent volume (and I have read one or two reviews of the latest edition, which came out on 19th October) and spoken to a number of people who have had different treatments. I also joined the North Hants prostate group (and have been to two sessions) and 'attended' two online sessions of the Prostate Cancer UK Active Surveillance group. I almost feel that I have been researching for too long now (!) and I want to get on and make a decsion. I will be very interested to hear how it goes for you (if you feel like saying). I hope all goes well on 16th November.

User

Posted 17 Nov 2023 at 17:03

HIFU UPDATE

Yesterday I had my HIFU procedure. The private hospital is 90 minutes away from where we live; getting there was easy but parking a nightmare. Arrived at 11.00. Checked in, usual paperwork/allergies/previous medical history etc all triple checked, but in a friendly and efficient manner. Anaesthetist and surgeon both separately went through checks and surgeon pointed out all possible risks (to the horror of my wife)! He also realistically pointed out that maybe 30% of HIFU patients may need further surgery within a few years.

The hemi-ablation of my Gleason 3+4 and my Gleason 3+3 on the posterior left of the prostate lasted about 2 hours under GA and I was painless and symptom free before, a day later I still am both. The only tedious bit is (as many have pointed out) the catheter but I guess I just have to get used to it. My overnight catheter bag was full to the brim this morning!
I had a bath this morning (in our cottage we have no shower) whilst wearing the catheter and that seemed to be ok. Advice taken from the forum about clothing and I bought a loose fitting tracksuit-bottom to wear which both hides but contains my apparatus!
I was told exercise was good and I should aim to walk a mile by the 5 day point when the catheter comes out. As I normally walk 6 miles before breakfast, I felt this was rather un-ambitious so my wife and I had a walk today exactly 24 hours after the procedure and did a slow mile together.

I was briefed about the removal of the catheter and instead of driving back 90 minutes to the hospital for them to do it, I have chosen to do it myself next week. I was also briefed about self catheterisation in case I have temporary retention and given a pack of 10 single use catheters for any occasion over the next few months when I cannot pee properly. They also gave me 5 Tena pads for the first few days without the catheter. I write about all of this completely confidently (but don’t actually feel it at all! Don’t tell anyone!)

So far, I have been impressed by the professionalism of possibly the best HIFU chap in the country and by the friendliness and care of his team. I hope when and if I can look back on this in a few years I will still feel the same! I note that if I had been waiting to see the same HIFU surgeon through the NHS, I would still be waiting one more week for the initial consultation and about 4 months for the same procedure. It was my choice to raid our meagre piggy bank.

As in all the other helpful experiences of those in the PCa club, I write this not as advice to anyone to persuade them to follow this path, but rather that my experience may help them choose which is the best path for them. I also would welcome any advice from the more experienced club members if anything I am doing seems to be patently wrong!

Simon

User

Posted 14 Dec 2023 at 10:51

Hi Sam8888 Could you please tell us how it is going, a month on?

User

Posted 14 Dec 2023 at 12:45

Hi Jonathan, update as requested.
Four weeks to the day since my HIFU procedure. For the first 5 days I was wearing a catheter which was frankly tedious, but necessary. On day 5 I then followed Youtube and other medical instructions and removed the catheter myself at home. Very tiny discomfort as I pulled it out but nothing to complain about. I was concerned that I would not be able to wee properly but two hours later I was back to normal and have been ever since. Slight traces of blood in the wee but that soon disappeared. I must admit to being very glad to get rid of the catheter.
I had been given incontinence pads and self catheterisation stuff in case I suffered any after effects but so far have not needed either.
It all seems like a dream now as I have almost no side effects and consider myself to be very fortunate that my surgeon was able to catch the PCa early. My daily 6 mile walks pre-breakfast were resumed on day 6 with a couple of longer walks (10-12 miles) thrown in for good measure once a week and when I remember I try to do the kegel exercises (I do recommend doing these as often as you can before and after any treatment.)

I keep reminding myself that these are early days and I have no real idea if the cancer has been ablated successfully. I will have my PSA tested at the 3 month stage and have yet to see if this can be done by my local medical centre instead of having to drive 90 minutes to the private hospital. Likewise my first actual 3 month follow up with the surgeon based on these PSA results should be a zoom call rather than this long journey again. More updates to follow after these 3 monthly tests.

Fingers crossed!

Simon

User

Posted 29 Jan 2024 at 16:42

Hi Sam,

I am strongly considering HIFU.

My local hospital (Surrey) don't offer it, but were happy to refer me to a Hants hospital to consider my viability for the prcedure (on the NHS).

I had prelimiary meeting with the surgeon about 3 weeks ago, and subsequent scan 2 weeks ago, now awaiting....

Another month on from your last post - how is it going... I hope very well....

I'd be very interested in your views on the treatment as whole - and if there are any questions you wished you had asked prior and anything else you feel is relevant to the decision to go down this route (or not).

Thank you and good luck...

User

Posted 29 Jan 2024 at 18:02

Hi Ciprico,

it is difficult to reply without sounding complacent.

I am coming up for the three month stage in a few weeks when I will have my first PSA blood test, but since my first PSA readings before I was diagnosed were probably artificially high due to an UTI, then this forthcoming reading on its own will probably not tell me much. I am hoping the next reading at 6 months will give me a better indication of whether everything has gone well.

The complacent bit comes because I feel absolutely normal and at times find that I have completely forgotten about PCa. As I have reported before, I walk 6 miles every morning before breakfast (it’s lovely watching dawn starting to occur half way through my walk). I stopped taking my Tamsulosin a month after the procedure and haven’t taken it since; I don’t seem to need it anymore. My nocturnal visits to the loo have gone down from about 4 / night to at most 2 and often just 1 so I am hopeful that the HIFU ablated tumours may have gradually washed away reducing the overall size of my prostate. Sex life is back to normal. Absolutely no incontinence.

So I feel guiltily complacent that everything seems to have gone well but it is still very early days and who knows what the future will bring!

As far as my views on the treatment as a whole, I just wish that more men could be diagnosed early enough for them to be offered HIFU and have the same minimally invasive treatment and so far amazing results!

I regret that I had to pay for the treatment, there are many other things I would like to have spent £13,000 on, but if I had waited for the same surgeon to do it on the NHS, I would still be waiting with all the uncertainty that that entails.

As previously mentioned, I did a lot of research, read books, listened to PODCASTs and made a list of questions which I had handy when speaking to the surgeon but waited until he had said his bit before consulting the list just to check that all had been covered. My surgeon was very forthright in covering the risks, and the probability of further treatment after three - five years, but as I discussed with him, in my mind, the lack of invasive after effects outweighed the possibility of having to have further treatment.

Knowing what I know now, would I have done anything differently? No.

I hope this helps in some way with your own decision about HIFU and which ever path you go, I hope you have a very successful outcome.

Best wishes,

Simon

User

Posted 01 Feb 2024 at 20:32

Hi

3 years on from a primary HIFU I have today been told my PSA is still under 1.

This is good as one side was not touched and would therefore be producing psa

Having had no after affects what so ever, following the HIFU, I am celebrating having done the right thing for me personally. See my bio , I am 79 and therefore have a different view of the possibility of having to have a repeat etc.

Good luck to those just had it or seeking HIFU!

Bill 2

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