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HIFU, my experience

User
Posted 01 Aug 2015 at 01:18

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 21 Aug 2015 at 23:49  | Reason: Not specified

Barry
User
Posted 01 Aug 2015 at 01:18

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 21 Aug 2015 at 23:49  | Reason: Not specified

Barry
User
Posted 03 Aug 2018 at 07:06

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 18:46  | Reason: Named Consultant

User
Posted 02 Aug 2015 at 20:33

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 20:35  | Reason: Not specified

User
Posted 25 Jul 2018 at 00:57

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 01:14  | Reason: Can't get link to highlight without editing - always the same

Barry
User
Posted 03 Aug 2018 at 19:51

Hello Marianne,

I hope you are coping 

 

Regards Barry

User
Posted 08 Sep 2018 at 17:50
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
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

Do all you can to help yourself, then make the best of your time. :-)
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User
Posted 02 Aug 2015 at 17:29

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 17:30  | Reason: Not specified

User
Posted 02 Aug 2015 at 18:01
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 20:33

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 20:35  | Reason: Not specified

User
Posted 02 Aug 2015 at 20:43

Hi Barry,

Good luck, sounds like it all went well

Barry

User
Posted 03 Aug 2015 at 06:33

Hi Barry

Wishing you a speedy recovery

Colin

User
Posted 03 Aug 2015 at 06:35

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 08:32

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

User
Posted 03 Aug 2015 at 17:36
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 00:00

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 21 Aug 2015 at 23:51  | Reason: Not specified

Barry
User
Posted 05 Aug 2015 at 23:13
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 00:10

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 22:35

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 22:57  | Reason: Not specified

Barry
User
Posted 05 Sep 2015 at 09:42
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 13:05
Great news Barry, one down one to go, keep kicking its A**

Roy

User
Posted 05 Sep 2015 at 13:38

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
 
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