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HIFU, my experience

User
Posted 01 Aug 2015 at 02:18

HIFU (High Intensity Focused Ultrasound), is a treatment which can be used as a primary one for Prostate Cancer as an alternative to the more usual ones of surgery or various ways of delivering radiation. It is not usually given if the cancer has left the capsule.  It is also used as a salvage treatment where primary Radiotherapy has failed. It is in this latter context that I was referred by the Royal Marsden to University College London Hospital to see whether I would be a suitable patient for HIFU as my low but persistently rising PSA and preliminary scan at the Marsden indicated recurrent cancer in the Prostate.  After comprehensive scans and a template biopsy at UCLH I was told that I could be treated by HIFU within their 'FORECAST' trial.  

On 28th July I had the HIFU which took nearly 2 hours and the lady surgeon told me it went well.  After a further hour or so I was able to walk to the nearby hotel where UCLH had reserved a room for me because their 'Cotton Room' accommodation was fully booked.  I had a bag for urine strapped to my leg and a larger overflow night bag was provided as was a course of antibiotics, pain killers and laxative.  There was some pain in my penis which smarted as when you get soap in your eye but not quite so intense if more persistent.  Since then the penis has become more sore no doubt due to bruising coming out and now feels like it's been put on a slab and hit with a mallet!  The catheter is due to come out in another 4 or so days and hopefully things will be easier by then.  So far there has been no blood in my urine but some burnt tissue is likely to pass with urine in due course.  I am to be regularly monitored for a year and have a final scan in twelve months.  I will update this from time to time.

 

Edited by member 22 Aug 2015 at 00:49  | Reason: Not specified

Barry
User
Posted 01 Aug 2015 at 02:18

HIFU (High Intensity Focused Ultrasound), is a treatment which can be used as a primary one for Prostate Cancer as an alternative to the more usual ones of surgery or various ways of delivering radiation. It is not usually given if the cancer has left the capsule.  It is also used as a salvage treatment where primary Radiotherapy has failed. It is in this latter context that I was referred by the Royal Marsden to University College London Hospital to see whether I would be a suitable patient for HIFU as my low but persistently rising PSA and preliminary scan at the Marsden indicated recurrent cancer in the Prostate.  After comprehensive scans and a template biopsy at UCLH I was told that I could be treated by HIFU within their 'FORECAST' trial.  

On 28th July I had the HIFU which took nearly 2 hours and the lady surgeon told me it went well.  After a further hour or so I was able to walk to the nearby hotel where UCLH had reserved a room for me because their 'Cotton Room' accommodation was fully booked.  I had a bag for urine strapped to my leg and a larger overflow night bag was provided as was a course of antibiotics, pain killers and laxative.  There was some pain in my penis which smarted as when you get soap in your eye but not quite so intense if more persistent.  Since then the penis has become more sore no doubt due to bruising coming out and now feels like it's been put on a slab and hit with a mallet!  The catheter is due to come out in another 4 or so days and hopefully things will be easier by then.  So far there has been no blood in my urine but some burnt tissue is likely to pass with urine in due course.  I am to be regularly monitored for a year and have a final scan in twelve months.  I will update this from time to time.

 

Edited by member 22 Aug 2015 at 00:49  | Reason: Not specified

Barry
User
Posted 03 Aug 2018 at 08:06

My husband had HIFU in 2006 as a secondary form of treatment. He had RT in 2000 and the cancer recurred in 2004.

He paid for it privately as the PCT would not fund further treatment. ********. It failed as it was subsequently discovered, by MRI, that the recurrence was in the seminal vesicle. As I understand it, cancer in this area cannot be treated.

In my area of East Surrey, HIFU is not recommended as a primary course of treatment.  It is alleged that many men have died as a consequence of having primary HIFU instead of the conventional RT. This has been widely reported in newspapers.

Edited by moderator 03 Aug 2018 at 19:46  | Reason: Named Consultant

User
Posted 23 Feb 2019 at 12:36
Nice to read that HIFU is going well for those that had it.

Don't read much about it here or elsewhere, maybe because it is so successful?

A friend of mine's, recently diagnosed, brother had it 3 years ago and all his results are all good.

Friend, understandably considering that treatment path in due course.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 02 Aug 2015 at 21:33

Hi Barry

Pleased to read you should soon be over the worst of HIFU surgery.

Good luck with obtaining Nanoknife treatment.

Ray

Edited by member 02 Aug 2015 at 21:35  | Reason: Not specified

User
Posted 25 Jul 2018 at 01:57

Hi Rick,

As I said when I started this thread, HIFU can be given (to suitable men) as original radical treatment or as a salvage treatment for failed RT. (again for suitable men). In both situations the cancer should still be contained within the Prostate. Results are better if there is only a small amount of cancer and on one side only. Very few hospitals/medical facilities offer HIFU in the UK, although more are introducing it.

If a man decides to have HIFU as a primary treatment he makes the decision in preference to having a traditional treatment such as a form of surgery,radiation or even other forms of lesser established treatment such as Cryotherapy, Nanoknife IRE or FLA for example.The advantages of having this as a first line treatment are that the procedure is quickly performed with generally lesser side effects, particularly where only a small part of the Prostate, which must be accessible for the HIFU probe to focus on, needs to be ablated. It is also possible in need to repeat the HIFU. (It may be possible to have salvage Brachytherapy following failed HIFU, I didn't research this as HIFU was not my first line treatment.) Certainly, HIFU has improved over recent years but long term results are not yet well known. I believe that Brachytherapy is a more proven treatment and where appropriate can be augmented by EBRT as part of the treatment.

HIFU as salvage treatment for failed RT is a quite different situation. Usually, the man has had his full dose of RT largely to his Prostate and Prostatectomy thereafter is very difficult with high risk of incontinence and ED to boot. Therefore, if the cancer is still within the radiated Prostate, HIFU or another way of treating the Prostate with focal treatment means that it is possible to avoid HT, Chemo and other down the line treatments that work systemically, when only really the Prostate needs to be treated.

I have not added to this thread for some time now as I have posted my situation elsewhere. However, as it has now been referred to I will update. HIFU was administered where one only core of a template biopsy showed a tumour. There was some doubt about another area within the Prostate that might have cancer but this was not ablated. There was also doubt about cancer being in an iliac node. I think the operation went well in treating what was intended, However, my PSA continues to rise, albeit slowly, and a private PSMA scan has confirmed that there is a small tumour in another part of my Prostate. which I am hoping will be treated with further HIFU or if this is too difficult with Cryotherapy. UCLH are reluctant to repeat HIFU saying my Prostate has already been subjected to two radical treatments. I have a telephone appointment with them on 31st July to hopefully get a final decision on this as otherwise I will look to get this done privately---ouch! The PSMA scan showed no pelvic involvement or anywhere else outside the Prostate so why settle for HT or any other systemic treatment at this stage I argue? 

My urinary function remains as pre HIFU and nothing else has changed so far, nearly 3 years on.

Newspapers often dramatise but if correctly reported, the Professor quoted in this article and the lady doctor C M who administered my HIFU are upbeat on the subject of HIFU (High Intensity Focal Ultrasound) http://www.dailymail.co.uk/health/article-5921047/Ultrasound-just-effective-surgery-radiotherapy-prostate-cancer.html

 

Edited by member 25 Jul 2018 at 02:14  | Reason: Can't get link to highlight without editing - always the same

Barry
User
Posted 03 Aug 2018 at 20:16

Hello Marianne,

It is sad that the treatment your husband had did not work for him and highly suspicious that records were not properly kept. It is also appreciated that you added to this thread in your circumstances.

It is a fact that HIFU for PCa will not treat areas beyond the Prostate. This is also true of surgery where it is often found that if the cancer has gone beyond where the knife can cut, some other form of treatment will be needed. So this does not necessarily mean that surgery or as in your husband's case HIFU was a failure if his cancer had in fact spread beyond the prostate, perhaps this because previous diagnostic scans did not show it (It has to be remembered that scans have improved greatly over recent years but still do not always show the full or possible extent of PCa even now).

I did quite a bit of research on HIFU among other treatments in 2007/8 when I was first diagnosed with PCa. I also discussed the possibility with my Consultant at the Royal Marsden, who said he would arrange an appointment for me to see the widely acknowledged expert for HIFU in the UK. However, with my initial staging from T2A upgraded to T3A after MRI, it was agreed it would not be appropriate to further consider HIFU.* It is strange that as an assiduous follower of developments in PCa and a regular newspaper reader, I have not seen allegations that men have died because they had HIFU instead of conventional RT. I would be interested to be directed to any authoritative links/studies that show this. I do recall one American surgeon saying HIFU only blistered the tumour in one patient but how well was the HIFU done and was it appropriate in that case? It should also be noted that considerable advances have taken place in recent years in the way the procedure is done and in the actual equipment.

Using an unapproved procedure is of course another matter. There was a time when HIFU could be done generally, then it was subsequently only allowed for NHS patients within studies but allowed to be done privately.

* It is ironic that due to failed RT, I was referred in 2015 to the same expert at UCLH for salvage HIFU that I would have seen in 2007. This I believe was successful in what it set out to achieve. What was NOT done as I understand it, was to treat a different area of my Prostate where cancer was suspected. I am now pressing to have this other area treated with HIFU or Cryotherapy as appropriate because my PSA continues to rise and a PSMA scan failed to show any cancer outside my Prostate but some within it.

UCLH intended to palm me off with just HT under the aegis of an oncologist in Devon. I reverted to my consultant at the Marsden and pressed by me with the Marsden's support, UCLH have arranged (eventually), to give me another MRI. Following this I was told a MDT will look at the scan and decide if they will give me further focal treatment. If they decide not to treat, I will find somewhere privately that will.

I asked the Doctor I spoke with at UCLH why when a recent PSMA scan which I sent to them, showed cancer in my Prostate they needed a follow up MRI. I was told the MRI would show the cancer more accurately.....hmmmmm.

So, the battle continues ........

Just to confirm what I have always said which is I would not try to push a man towards any particular treatment. I am only seeking further salvage treatment applicable to my own circumstances which preclude further RT to the Prostate and surgery. HIFU as a primary treatment is less well proven than RT or Brachytherapy which can extend further, even if side effects are not so severe generally with HIFU.

 

Edited by member 03 Aug 2018 at 22:18  | Reason: Not specified

Barry
User
Posted 03 Aug 2018 at 20:51

Hello Marianne,

I hope you are coping 

 

Regards Barry

User
Posted 08 Sep 2018 at 18:50
Hi Mariannne,

Thank for for posting again which I and I am sure others appreciate in your sad circumstances. You are right; it is a complicated subject and also a sensitive one, often with unpredictable outcomes whatever the treatment. The chances of a successful outcome are certainly improved by having a good team on your case preceded by high quality tests/scans and interpretation of these. and good follow through. (A number of times we have heard with regard to breast cancer for instance which always seem to be considered more newsworthy, that those who assess scans have got it wrong and women have to be recalled). A similar situation must apply to men when their scans are misinterpreted and heavily relied on by those administering treatment. Also, even the best scans do not always show the true extent of the cancer. My own case illustrates this. UCLH believed the uptake of Choline in an iliac node after HIFU indicated cancer but I had this scan viewed by 3 other hospitals and none of them were convinced this was the case. I subsequently had a PSMA scan done elsewhere and it was reported by the hospital that there was no evidence of any cancer outside the Prostate but some still within it. So whereas UCLH just wanted me only to be treated with Hormone Treatment, there is now the possibility of further focal therapy to deal with this other cancer in my Prostate. This illustrates the importance of scan interpretation and of high quality scans. Of course biopsy findings are also important to assess whether the cancer within the Prostate can reasonably be left or is aggressive and needs to be specifically targeted. So sometimes the team get it wrong and not necessarily through negligence but because the tools available to them are not good enough. This is just one aspect but an important one. We here are not competent or in a position to comment on the actual quality or how appropriate HIFU was in the circumstances but as you said, the surgeon was not authorized to do the op so is at fault in that regard at least.

HIFU and indeed other forms of focal therapy can be suitable in certain cases and particularly as salvage treatment for failed radiotherapy but has it's limitations.

Didn't have any clinical involvement with any lady except C M (surname of former male England football captain), who did the HIFU procedure.

Barry
User
Posted 09 Dec 2018 at 23:59
Well it was back in 2015 and after the bruising had gone it was as though I had not had the procedure. It seems to have dealt satisfactorily with the tumour found at the time but I now have another tumour in the Prostate and following a recent biopsy am waiting to hear whether UCLH will treat with HIFU or another focal therapy but suspect they will just want to put me on HT to which I am opposed for several reasons.

I found it easier to stand or lie down after HIFU rather than sit upright which puts a lot of pressure on the tender part. I did find it helpful when sitting down to lower one cheek first and slouch back as I lowered the other cheek thereby minimizing pressure to the tender part. Things were considerably eased after my catheter was removed.

Hope your op goes well. Suggest it might be helpful to you and others if you report back under the thread you started.

Barry
Show Most Thanked Posts
User
Posted 02 Aug 2015 at 18:29

Hi Barry,

I am so glad you're now through that procedure.

It does sound like you're going to have some painful days (your eye watering description of the pain now.." feels like it's been put on a slab and hit with a mallet!" had me wincing here).http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-surprised.gif

Here's wishing you a quick and full recovery with the best of all outcomes.

All the very best,


George

 

Edited by member 02 Aug 2015 at 18:30  | Reason: Not specified

User
Posted 02 Aug 2015 at 19:01
Brilliant post Barry, I'm sure this thread will become one of those referred to regularly. You are quite the pioneer!!

Xx

Mo

User
Posted 02 Aug 2015 at 21:33

Hi Barry

Pleased to read you should soon be over the worst of HIFU surgery.

Good luck with obtaining Nanoknife treatment.

Ray

Edited by member 02 Aug 2015 at 21:35  | Reason: Not specified

User
Posted 02 Aug 2015 at 21:43

Hi Barry,

Good luck, sounds like it all went well

Barry

User
Posted 03 Aug 2015 at 07:33

Hi Barry

Wishing you a speedy recovery

Colin

User
Posted 03 Aug 2015 at 07:35

Hi Barry

It is good to hear that you have now completed your HIFU treatment. I am sure your usual comprehensive updates will be useful for everyone who has an interest in the HIFU option. I hope everything goes well over the next few days.

Regards

Alan 

User
Posted 03 Aug 2015 at 09:32

Thanks Barry for sharing, very informative, hope all goes well Andy

User
Posted 03 Aug 2015 at 18:36
Hi Barry - a very informative and detailed write up which I feel sure will be of great benefit to many others. So sorry that you have needed to go through all of this and I wish you all the very best as your recovery progresses.

Kevan

User
Posted 04 Aug 2015 at 01:00

Thank you for your thoughts and good wishes.

My urethral catheter was causing me a lot of discomfort - I think walking quite a way very soon after the HIFU may have contributed to this. I saw my GP yesterday morning and he took the catheter out. He said I must pass water by 4pm otherwise contact the duty doctor and have a new catheter fitted. Fortunately, by 2pm I was able to pass urine. It had a very small amount of blood in it when the flow first started but no evidence thereafter. Having had the catheter removed has made it vastly more comfortable and I have been able to start light work again.

 

Edited by member 22 Aug 2015 at 00:51  | Reason: Not specified

Barry
User
Posted 06 Aug 2015 at 00:13
Thanks for all the information. So pleased that it sounds to be going well. I may very well be in a similar situation myself depending on the latest tests from the Marsden !
User
Posted 22 Aug 2015 at 01:10

Thank you for your good wishes. I decided to delete references to other treatments (on which I will start a new thread), so I can keep this only on HIFU.

There is not much to say at present. I am continent and my urinary function is as pre HIFU. I have not experienced any pain for about 2 weeks now and it is as if I had not had this treatment. So in the short term I am well pleased I had it. I will comment further in a month or two or if any adverse effects are experienced in the interim.

Barry
User
Posted 04 Sep 2015 at 23:35

An update.

Immediately before having salvage HIFU on 28th July 2015 for failed RT, my PSA was 1.99. Four weeks post HIFU it was 0.42 so has achieved a marked lowering. HT has not been started (yet). Clearly, one would not expect HIFU to treat for up to 2 years like RT but I am hopeful a further fall will follow for another month or so. I will ask about this aspect when I next have a consultation. If I can get the PCa affected iliac lymph node specifically treated with RT or by surgery, this could further lower the PSA. However, if this does not prove possible I will start HT which might also help further reduce PSA.

(Some may be surprised that with 3+4 PCa in a Prostate and in a Lymph Node prior to HIFU, my PSA was only 1.99. It just goes to show that you can have PCa with a low PSA.)
.

Edited by member 04 Sep 2015 at 23:57  | Reason: Not specified

Barry
User
Posted 05 Sep 2015 at 10:42
Barry

well that is a great start I am so pleased to hear this.

As for low PSA still equating to PCa yes it does seem a little ironic, I know of at least 2 men who have advanced PCa with extensive mets and through the whole time of their cancer from diagnosis to date and through all treatments their PSA has remained below 5. Others are surviving and in some cases thriving with PSA levels in the 100s or even 1000s

Roll on the x factor (no not the thing on TV) but the yet to be discovered test that added to the PSA test gives PSA + XXX = pussy cat or tiger PCa depending on the values and how the cancer is behaving at that moment in time. I am sure that is over simplified but it is just a thought.

best wishes as always

xx

Mo

User
Posted 05 Sep 2015 at 14:05
Great news Barry, one down one to go, keep kicking its A**

Roy

User
Posted 05 Sep 2015 at 14:38

Barry,

 

That's an excellent outcome so far. As Roy says, keep kicking its ass!

 

Great to read such good news.

 

 

 

George

User
Posted 03 Nov 2015 at 22:47

PSA test on 27th October shows fall from 0.42 to 0.39. I don't expect much more of a fall from the HIFU as it does not continue to work over many months like radiotherapy. It may be that the suspicious iliac node is producing small amounts of PSA and this is under review.

My levels of continence and bowel function etc., are as if I never had the HIFU so I am thankful for this. Can't comment on whether HIFU would have adversely affected erections as EBRT stopped these back in 2008.

Barry
User
Posted 03 Nov 2015 at 23:11

Really pleased for you, my friend x (for the results, not for the loss of erections all those years ago!!!)

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

User
Posted 08 Feb 2016 at 10:39

Hi again Barry,

Sorry that I've been so very long in catching up with your 'new' thread - sounds like at minimum no harm done (despite the eyewatering stuff!) and hopefully the fact that you are by now well skilled in staying on top of the information flow between medics will ensure that they keep your condition in the spotlight and react promptly if/when required. Remaining in control is definitely name of the game.

I enquired about HIFU trials some years back but they wouldn't then admit a 'complex case' which might muddy their carefully managed research endeavours - but perhaps I should now try again. Presently awaiting further mri results and scheduled saturation biopsy no.5 but after total 90 cores so far in what was 130ml prostate , can't say I'm too keen whatever the MDT's inevitable (serial) recommendation - still get gushing episodes almost certainly resulting from previous biopsy wounds.

They've long acknowledged that any more conventional radical treatments would imply especially drastic outcomes in this case, so perhaps pushing for a long range HIFU referral is now a very serious option to broach with the oncos up here. May well be coming back to you pleading for advice !

Sincerely / David

'It couldn't possibly happen to me....'
User
Posted 10 Feb 2016 at 00:40

Hi David,

Sorry you are suffering.

It seems to be the case that prior to having HIFU you have to have a template biospy but I am not aware whether this is the case with Cryotherapy.

Unfortunately 3 months on and my PSA has risen to 0.49. Whether this is because some cancer cells remain in my Prostate or are from elsewhere I hope will be determined when opportunely I participate in an imaging trial at UCLH in May. I have posted separately on this under LOCATE trial.

Barry
User
Posted 10 Feb 2016 at 16:25

Hi again David,

It seems the HIFU is more precisely focused whereas the ice ball formed in Cryotherapy destroys a wider area, so it MAY not require another biopsy. If you click on this link there is an interesting story by a patient who had this Cryotherapy and is prepared to be contacted if you feel this is something that might be of interest to you. http://www.ahamm.co.uk/prostate/blogdetails.htm#why-emberton

If you want to skip the videos that have been posted previously, there is more of personal experience of the blogger from Dry Climax onwards

 

Edited by member 10 Feb 2016 at 16:37  | Reason: Not specified

Barry
User
Posted 20 Aug 2016 at 01:10

Had a rather overdue telephone consultation with my urologist at UCLH yesterday morning. It seems from the recent scans that it is thought the HIFU was successful in destroying the previously found tumour within the Prostate. Also, apart from the short term discomfort of the catheter, the HIFU has had no adverse side effects. However, there is a very tiny area in the prostate that is suspicious and it is possible that a highly targeted template biopsy might be done under a local anaesthetic to check this out. I also asked the consultant if a core could be taken from the suspect node and he said he would take advice on this. The node is suspicious due to the uptake of Choline but the shape and size is the same as shown on scans going back to 2007/8. My PSA nadir post HIFU was 0.39 but this has since risen to 0.73 at the end of July 2016, so there must be some cancer cells somewhere.

Edited by member 20 Aug 2016 at 01:31  | Reason: Not specified

Barry
User
Posted 20 Aug 2016 at 13:26

Thanks for the update, Barry.

I'm not likely to ever be in the HIFU camp but it's most useful knowledge and I'm also interested in your diagnostic experiences.

Last time my onco indicated that if my next PSA rose (result will be known on 2nd Sep), he will consider another scan. He didn't say what sort and I didn't ask but I'm happy that there is some momentum.

Dave

Not "Why Me?" but "Why Not Me"?
User
Posted 20 Aug 2016 at 15:26

Hi Barry,

I'm so glad to see this update. It does look like the HIFU has been a success, although I know you'll be worried the about the PSA rise  and those remaining cancer cells.

It seems to me that we're never free of those damn cells.

Maybe (and hopefully), we'll die with those cells NOT because of them.

 

Last time I saw my oncologist, I asked a question that I'd been meaning to ask for years.

I said 'Why is it that when I come off treatment (HT) my PSA inevitably rises, sometimes over a year or 2 years to over 20.0, yet every time you put me back on treatment, it's always after thorough scans, where nothing is ever seen? Just where ARE those cancer cells hiding?'

He said he's 99% sure that they're micro-mets somewhere in my lymphatic system.

Since Zoladex hammers them down each time I return to it, it seems more and more likely that is intermittent treatment will continue doing the job for quite a few more years yet.

 

I'm convinced we both have many more years ahead of us.

 

Stay well my old friend,

And never lose your amazing pro-active attitude.

 

Love to Barbara,

 

George

User
Posted 20 Aug 2016 at 23:52

Good to hear from you George and to know that your Intermittent HT regime is still working well. It may be something I will adopt at some point but having had 8 months of Zoladex in 2007/8 and side effects, I hope to avoid returning to it for as long as possible. My consultant at UCLH said he thought I had done well to refuse it after HIFU so far and to do so for as long as I reasonably can.

Dave, hope you are given good news on 2nd September.

Barry
User
Posted 21 Aug 2016 at 10:15

I smile on reading these posts as they're like garden weeds. George's approach is like weeds on the drive every now and then out comes the Pathclear (other products are avaliable -:) .) and all is pretty much clear for a awhile - just got to keep hanging in there until a new improved product comes on-line. Whilst Barry's approach is seek out weeds wherever they hide and hit them hard with the latest products he can - may that continue until they all throw their hand in. For me I've no idea if I've got weeds but if I have provided they don't start spreading I let them be - I'm a laid back gardener.

Good luck to all

Ray

User
Posted 21 Aug 2016 at 12:28

That's a great anology, Ray.http://community.prostatecanceruk.org/editors/tiny_mce/plugins/emoticons/img/smiley-smile.gif

 

Yes it's just like dealing with weeds (nasty ones at that!).

 

I opt for the cheaper 1950s weedkiller because I know it will work for a year or so for me.

Barry is more your cutting edge' man and will go to infinity and beyond to find a 'state of the art' weedkiller. We need men like Barry to show us new approaches.

As has often been said, there's only one rule with PCa  - 'There are no rules'.

While Prostap is like the Gold Standard HT for some guys, it didn't agree with me at all, so it was back to the Zoly after three months.

When I once tried Casodex 150 as my HT, PSA plummeted like a stone, but the SEs were awful and I asked to come off it after 6 months.

We can only continue with what works for us as individuals, and pray that those weeds don't find a way to overcome the drugs.

 

Dave, good luck for Sept 2nd.

No matter how many years we've fought these weeds, we still worry about that next PSA result.

Just tell yourself it will be a good one.

 

All the best,

 

 

George

 

 

 

 

User
Posted 02 May 2017 at 01:25

As I have not given an udate on my HIFU since August, I thought I would do so now. In truth there is little to say. My PSA has ranged from 0.49 shortly after HIFU to 0.64 at the most recent test in February this year. There is no discernable change in my urinary frequency or urgency, although I feel the 'stream' is not quite as strong as it was in the past but probably due to weaker bladder/muscles as part of the ageing process rather than caused by the HIFU. I can say that in my case the HIFU has not added to the side effects caused by RT back in 2008 or resulted in any complication (at least so far), which I would have expected to have experienced by now if It was to happen. The procedure was a quick, easy and the pain was not for long but done by the leading team of HIFU surgeons in the UK which may have helped. How well it works in the medium to long term only time will tell but at least in the short to medium term it has certainly caused the cancer a set back!

Scans have showed there remains a suspicious area in my Prostate and possibly also in one iliac node but UCLH will neither do a further biopsy nor further radical treatment including further HIFU. (They say 2 major treatments on my Prostate in enough). Should my PSA double to 1.28 They will just put me on HT. ......... I might have other ideas about that!!!

Edited by member 25 Jul 2018 at 02:07  | Reason: Not specified

Barry
User
Posted 24 Jul 2018 at 18:36

Barry - I have recently been diagnosed with prostate cancer (Gleason 3+4) and am considering HIFU as a treatment. I've just found this very useful thread and wonder if you had any advice for someone in my position. I am also looking at radiotherapy and brachytherapy, so would be interested to hear your views on how you felt, after this time, the treatment went, side effects and so forth.

Thanks for any help you can give.

Rick

User
Posted 25 Jul 2018 at 01:57

Hi Rick,

As I said when I started this thread, HIFU can be given (to suitable men) as original radical treatment or as a salvage treatment for failed RT. (again for suitable men). In both situations the cancer should still be contained within the Prostate. Results are better if there is only a small amount of cancer and on one side only. Very few hospitals/medical facilities offer HIFU in the UK, although more are introducing it.

If a man decides to have HIFU as a primary treatment he makes the decision in preference to having a traditional treatment such as a form of surgery,radiation or even other forms of lesser established treatment such as Cryotherapy, Nanoknife IRE or FLA for example.The advantages of having this as a first line treatment are that the procedure is quickly performed with generally lesser side effects, particularly where only a small part of the Prostate, which must be accessible for the HIFU probe to focus on, needs to be ablated. It is also possible in need to repeat the HIFU. (It may be possible to have salvage Brachytherapy following failed HIFU, I didn't research this as HIFU was not my first line treatment.) Certainly, HIFU has improved over recent years but long term results are not yet well known. I believe that Brachytherapy is a more proven treatment and where appropriate can be augmented by EBRT as part of the treatment.

HIFU as salvage treatment for failed RT is a quite different situation. Usually, the man has had his full dose of RT largely to his Prostate and Prostatectomy thereafter is very difficult with high risk of incontinence and ED to boot. Therefore, if the cancer is still within the radiated Prostate, HIFU or another way of treating the Prostate with focal treatment means that it is possible to avoid HT, Chemo and other down the line treatments that work systemically, when only really the Prostate needs to be treated.

I have not added to this thread for some time now as I have posted my situation elsewhere. However, as it has now been referred to I will update. HIFU was administered where one only core of a template biopsy showed a tumour. There was some doubt about another area within the Prostate that might have cancer but this was not ablated. There was also doubt about cancer being in an iliac node. I think the operation went well in treating what was intended, However, my PSA continues to rise, albeit slowly, and a private PSMA scan has confirmed that there is a small tumour in another part of my Prostate. which I am hoping will be treated with further HIFU or if this is too difficult with Cryotherapy. UCLH are reluctant to repeat HIFU saying my Prostate has already been subjected to two radical treatments. I have a telephone appointment with them on 31st July to hopefully get a final decision on this as otherwise I will look to get this done privately---ouch! The PSMA scan showed no pelvic involvement or anywhere else outside the Prostate so why settle for HT or any other systemic treatment at this stage I argue? 

My urinary function remains as pre HIFU and nothing else has changed so far, nearly 3 years on.

Newspapers often dramatise but if correctly reported, the Professor quoted in this article and the lady doctor C M who administered my HIFU are upbeat on the subject of HIFU (High Intensity Focal Ultrasound) http://www.dailymail.co.uk/health/article-5921047/Ultrasound-just-effective-surgery-radiotherapy-prostate-cancer.html

 

Edited by member 25 Jul 2018 at 02:14  | Reason: Can't get link to highlight without editing - always the same

Barry
User
Posted 25 Jul 2018 at 07:53

Thanks Barry, this is very helpful - and thanks for the link to the article. Lots to think about ...

Rick

User
Posted 03 Aug 2018 at 08:06

My husband had HIFU in 2006 as a secondary form of treatment. He had RT in 2000 and the cancer recurred in 2004.

He paid for it privately as the PCT would not fund further treatment. ********. It failed as it was subsequently discovered, by MRI, that the recurrence was in the seminal vesicle. As I understand it, cancer in this area cannot be treated.

In my area of East Surrey, HIFU is not recommended as a primary course of treatment.  It is alleged that many men have died as a consequence of having primary HIFU instead of the conventional RT. This has been widely reported in newspapers.

Edited by moderator 03 Aug 2018 at 19:46  | Reason: Named Consultant

User
Posted 03 Aug 2018 at 20:16

Hello Marianne,

It is sad that the treatment your husband had did not work for him and highly suspicious that records were not properly kept. It is also appreciated that you added to this thread in your circumstances.

It is a fact that HIFU for PCa will not treat areas beyond the Prostate. This is also true of surgery where it is often found that if the cancer has gone beyond where the knife can cut, some other form of treatment will be needed. So this does not necessarily mean that surgery or as in your husband's case HIFU was a failure if his cancer had in fact spread beyond the prostate, perhaps this because previous diagnostic scans did not show it (It has to be remembered that scans have improved greatly over recent years but still do not always show the full or possible extent of PCa even now).

I did quite a bit of research on HIFU among other treatments in 2007/8 when I was first diagnosed with PCa. I also discussed the possibility with my Consultant at the Royal Marsden, who said he would arrange an appointment for me to see the widely acknowledged expert for HIFU in the UK. However, with my initial staging from T2A upgraded to T3A after MRI, it was agreed it would not be appropriate to further consider HIFU.* It is strange that as an assiduous follower of developments in PCa and a regular newspaper reader, I have not seen allegations that men have died because they had HIFU instead of conventional RT. I would be interested to be directed to any authoritative links/studies that show this. I do recall one American surgeon saying HIFU only blistered the tumour in one patient but how well was the HIFU done and was it appropriate in that case? It should also be noted that considerable advances have taken place in recent years in the way the procedure is done and in the actual equipment.

Using an unapproved procedure is of course another matter. There was a time when HIFU could be done generally, then it was subsequently only allowed for NHS patients within studies but allowed to be done privately.

* It is ironic that due to failed RT, I was referred in 2015 to the same expert at UCLH for salvage HIFU that I would have seen in 2007. This I believe was successful in what it set out to achieve. What was NOT done as I understand it, was to treat a different area of my Prostate where cancer was suspected. I am now pressing to have this other area treated with HIFU or Cryotherapy as appropriate because my PSA continues to rise and a PSMA scan failed to show any cancer outside my Prostate but some within it.

UCLH intended to palm me off with just HT under the aegis of an oncologist in Devon. I reverted to my consultant at the Marsden and pressed by me with the Marsden's support, UCLH have arranged (eventually), to give me another MRI. Following this I was told a MDT will look at the scan and decide if they will give me further focal treatment. If they decide not to treat, I will find somewhere privately that will.

I asked the Doctor I spoke with at UCLH why when a recent PSMA scan which I sent to them, showed cancer in my Prostate they needed a follow up MRI. I was told the MRI would show the cancer more accurately.....hmmmmm.

So, the battle continues ........

Just to confirm what I have always said which is I would not try to push a man towards any particular treatment. I am only seeking further salvage treatment applicable to my own circumstances which preclude further RT to the Prostate and surgery. HIFU as a primary treatment is less well proven than RT or Brachytherapy which can extend further, even if side effects are not so severe generally with HIFU.

 

Edited by member 03 Aug 2018 at 22:18  | Reason: Not specified

Barry
User
Posted 03 Aug 2018 at 20:51

Hello Marianne,

I hope you are coping 

 

Regards Barry

User
Posted 04 Sep 2018 at 03:06

Hello Barry,

my husband had RT 15 years ago & has been pretty well since. Unfortunately the PC has returned & he’s now considering HIFU. He’s worried about side effects but your experience has been encouraging.He’s also thinking about Nanoknife - but it’s so  expensive! I hope you’ve been able to find a successful treatment & your good health continues. Thank you for sharing your experience.

 

 

 

User
Posted 04 Sep 2018 at 21:34
Hi Caveman,

Sorry your husband's PCa now requires further treatment and after so many years too. We are not shown his histology but I would assume he has a rising PSA and most probably had a scan and maybe a biopsy. To be suitable for focal treatment hubby needs his PCa to be contained within his prostate. Has his consultant said this is his situation? Has hubby discussed possible salvage treatment with focal therapy with his consultant? There are a few Hospitals that will do HIFU or Cryotherapy for NHS patients within a trial and your husband's consultant could be asked to be referred to one that does. Mine was in a trial called 'FORECAST' at UCLH. The treatment is good but the process involved was very protracted despite me chasing them a number of times. Also, their admin is terrible. The latest in a number of errors was to ask me to attend one of their London premises next month and be prepared for various tests. Fortunately, I rang to check what this involved only to be told that this was a standard letter sent by mistake and that the appointment was just a telephone one to report on my fairly recent MRI scan. Just as well I did not book trains to/from Paddington/Devon and hotel accommodation!

An alternative would be to have appropriate focal therapy privately at one of the few authorized centers.

Nanoknife (Irreversible Electroporation ) is a more recent development lacking follow up assessment as yet and available at very few places in the UK. I believe FLA is only available abroad.

Barry
User
Posted 04 Sep 2018 at 22:39

Interesting Barry. I have just read your 25th July post and realise the lady who did you HIFU is the consultant we chose to do A’s monitoring as her experience in HIFU and the TOOKAD trial was the nearest we could find to understanding a primary focal treatment following A’s FLA. 

She offered us a private HIFU treatment but was 100% supportive of our FLA choice and was happy to do the monitoring even though she hadn’t treated or initially diagnosed A.

 

small world

 

User
Posted 05 Sep 2018 at 10:11

Hi Barry, thank you for your reply. We’re actually in Franice although we too come from Devon. HIFU is available to him here & he has decided to go ahead with it - he expects to get a date in about 3 months.

( by the way- I used the name Caveman as our village is called Caves!)

User
Posted 05 Sep 2018 at 20:59
I nearly addressed reply to 'Cavewoman', lol but hope you enjoy being in 'Caves' and that the HIFU goes well. They do have a lot of experience with HIFU in France and the French so termed 'Ablatherm' probe is generally used. In the UK the American 'Sonablate' seems to be becoming more the system of choice and there are pros and cons to each, although both have been subject to refinement.

Please let us know how it goes as not many men have HIFU in the UK.

Barry
User
Posted 08 Sep 2018 at 10:56

Hi Barry, Only just seen your reply. It is a complicated subject and I appreciate your reply to mine. A lot of it is down to the care & concern you get from your consultant.

There might have been a misunderstanding with my husband's cancer. The problem I had was that after paying for HIFU and it failing, the consultant was quick to authorise an MRI to find out what was going on inside. That's when he found the cancer in the seminal vesicle. I don't know if he had been given the results of the previous MRI ? Had he read them, he would have seen that the cancer was proceeding towards the seminal vesicle. Surely this would hve resulted in him telling us not to have HIFU ?

p.s. I assume you saw Miss A at UCLH ? We saw her in August 2010, but she did not have my husband's MRI scan from May 2010 in E.Surrey, so authorised another at UCLH. This was carried out on 17th September 2010 and they discovered the cancer had spread to his kidneys and liver. UCLH kept my husband in for 12 days and did nothing but give him Morphine. He was then sent to E.Surrey where they put stents in his kidneys.

The beginning of the end.

Mar.

User
Posted 08 Sep 2018 at 18:50
Hi Mariannne,

Thank for for posting again which I and I am sure others appreciate in your sad circumstances. You are right; it is a complicated subject and also a sensitive one, often with unpredictable outcomes whatever the treatment. The chances of a successful outcome are certainly improved by having a good team on your case preceded by high quality tests/scans and interpretation of these. and good follow through. (A number of times we have heard with regard to breast cancer for instance which always seem to be considered more newsworthy, that those who assess scans have got it wrong and women have to be recalled). A similar situation must apply to men when their scans are misinterpreted and heavily relied on by those administering treatment. Also, even the best scans do not always show the true extent of the cancer. My own case illustrates this. UCLH believed the uptake of Choline in an iliac node after HIFU indicated cancer but I had this scan viewed by 3 other hospitals and none of them were convinced this was the case. I subsequently had a PSMA scan done elsewhere and it was reported by the hospital that there was no evidence of any cancer outside the Prostate but some still within it. So whereas UCLH just wanted me only to be treated with Hormone Treatment, there is now the possibility of further focal therapy to deal with this other cancer in my Prostate. This illustrates the importance of scan interpretation and of high quality scans. Of course biopsy findings are also important to assess whether the cancer within the Prostate can reasonably be left or is aggressive and needs to be specifically targeted. So sometimes the team get it wrong and not necessarily through negligence but because the tools available to them are not good enough. This is just one aspect but an important one. We here are not competent or in a position to comment on the actual quality or how appropriate HIFU was in the circumstances but as you said, the surgeon was not authorized to do the op so is at fault in that regard at least.

HIFU and indeed other forms of focal therapy can be suitable in certain cases and particularly as salvage treatment for failed radiotherapy but has it's limitations.

Didn't have any clinical involvement with any lady except C M (surname of former male England football captain), who did the HIFU procedure.

Barry
User
Posted 09 Dec 2018 at 19:36

Hi Barry,

Thanks for getting back to me with your experience.

How are you feeling now since the procedure?

I am having mine tomorrow (10/12/18) and not looking forward to the discomfort afterwards, but it is unavoidable I suppose

and will just have to get through it as best as one can.

Best wishes,

William

User
Posted 09 Dec 2018 at 23:59
Well it was back in 2015 and after the bruising had gone it was as though I had not had the procedure. It seems to have dealt satisfactorily with the tumour found at the time but I now have another tumour in the Prostate and following a recent biopsy am waiting to hear whether UCLH will treat with HIFU or another focal therapy but suspect they will just want to put me on HT to which I am opposed for several reasons.

I found it easier to stand or lie down after HIFU rather than sit upright which puts a lot of pressure on the tender part. I did find it helpful when sitting down to lower one cheek first and slouch back as I lowered the other cheek thereby minimizing pressure to the tender part. Things were considerably eased after my catheter was removed.

Hope your op goes well. Suggest it might be helpful to you and others if you report back under the thread you started.

Barry
User
Posted 19 Jan 2019 at 16:23

Hello again Barry, I hope you are well .

My husband had his HIFU treatment 10 days  ago & seems to be recovering well- fingers crossed! We wont know how well it has worked fir 3 months.

User
Posted 19 Jan 2019 at 22:17
I don't know whether hubby has had his catheter out yet, - t's usually done between 7-14 days after the procedure but I found that when removed I was much more comfortable. Do let us know how he progresses.

Unfortunately, a small new tumour is said to be too close to my rectum for treating with HIFU. Therefor,e I am investigating the possibility of FLA for this, as apparently it is more precise and able to be used nearer to vital organs for small tumours for suitable men. This procedure, would I understand, have to be done privately abroad and long term outcomes are even less well established than for HIFU.

Barry
User
Posted 19 Jan 2019 at 22:52

It does make me cross that the NHS / government are so conservative (small C) about potential beneficial treatments and don’t have the cojones to face up to big pharma in terms of getting better new treatment deals. Surely a few thousand new patients at £X profit is better than no new profit at all?

 

plus how are you going to build an evidence base if you dont actually treat people? Its like the dilemma of an RP surgeon who cant get trade because his flight hours are too low but he needs trade to build flight hours.

This is where the EU could be on to a winner as if all the state medical institutions across the EU collectivised to negotiate with big pharma we might get an honest deal.

iI may be rambling 😂

Edited by member 19 Jan 2019 at 23:00  | Reason: Not specified

User
Posted 31 Jan 2019 at 22:27

Hi Barry,  surprisingly his catheter was removed the next day,before he left hospital.

He still has a bit of discomfort but not too bad. Good luck to you with your next treatment!

User
Posted 01 Feb 2019 at 01:29
Hi Caveman,

Interesting that hubby had his catheter out so quickly. Protocols clearly differ between countries and sometimes hospitals within them but I well remember how much more comfortable I was when mine was removed. Hope he continues to make good progress and it would be appreciated if you let us know over time his PSA figures and recovery.

Unfortunately, due to family illness and other matters, I have not completed preliminary research on FLA for which I may be suitable, UCLH having ruled out further HIFU as the tumour is too close to the rectum wall, I will start a new thread when a decision has been made on FLA.

Barry
User
Posted 23 Feb 2019 at 11:59

Hi Barry, I hope you are well.

My husband had his 1st PSA results after HIFU (6 weeks ago). It is 0.07 which he we feel very pleased with - seeing his surgeon on monday so hoping that its good news. All thebest,  Jain 🌹

User
Posted 23 Feb 2019 at 12:36
Nice to read that HIFU is going well for those that had it.

Don't read much about it here or elsewhere, maybe because it is so successful?

A friend of mine's, recently diagnosed, brother had it 3 years ago and all his results are all good.

Friend, understandably considering that treatment path in due course.

dave

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

 
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