HIFU, my experience

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 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

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

User

Posted 23 Feb 2019 at 22:24

Hi Caveman,

Good initial result because HIFU only treats a small part of the Prostate leaving the remainder to produce PSA. The next two PSA tests will hopefully show the PSA figures are stable.

Dave, it is even more important that a patient is right for HIFU than HIFU is the patient's treatment of choice.

Barry

User

Posted 25 Feb 2019 at 20:39

My hisband had his 6 week appointment with his HIFU surgeon today. Your cancer is gone is what he’s been told. After 15 years - this is a dream com true!

User

Posted 26 Feb 2019 at 06:08

Good news Caveman.

Very happy for you both.

dave

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

User

Posted 02 Apr 2019 at 10:50

Hi Barry,

Hoping you and others here can offer advice.

My husband was treated in 2016 with HIFU at UCLH. His stats were: PSA about 6.5, gleason 4+3, all cores on right side (90% cancer) involved but cores on left were clear. We initially saw Prof E in Harley street but after looking at the biopsy results and performing a DRE (which was very painful for my husband), he determined that HIFU wasnt appropriate and recommebded RP. Our GP had already done a referral to UCLH and we saw Mr A who agreed (after MDT) to do HIFU under the trial.

Husband had about 6 months of low dose HT to reduce prostate size and finally had HIFU in early autumn 2016. The surgeon treated over the midline. All was reasonably fine for a couple of years with PSA around 2.1-2.4. Then a jump to 3.4 in autumn 2018. I would say that urine stream hasn't been great but not sure if that's just part of having had HIFU. MRI in autumn 2018 was reported as clear. No infection found so had biopsy in Feb 2019. Seeing consultant in 2 weeks for results (delays due to holiday). I suspect theyve found something as she usually does reviews/results by telephone due to us living in Leics. Wondering what they might offer if it has recurred. Any thoughts? I notice you mention brachytherapy earlier on this thread.

Many thanks,

Kate.

User

Posted 03 Apr 2019 at 04:55

Why did you choose HIFU when your Prof did not recommend it?

User

Posted 03 Apr 2019 at 23:21

Very happy to see positive update by Caveman.

I have the same question as Prostate Pete. Sometimes the suitability of a candidate for a particular treatment is borderline. Professor M E who presumably Kate is referring to, is widely considered the foremost authority on Focal Therapy in the UK and beyond being quoted internationally. Apart from working privately elsewhere, he heads the Focal Team at UCLH. Why go against the recommendation of somebody of his stature?

Brachytherapy and or External Beam radiation can be given to suitable candidates as salvage treatment for failed HIFU. Repeat HIFU is also another possibility sometimes. Maybe a new scan might prove helpful.

Barry

User

Posted 08 Apr 2019 at 11:21

Hi everyone,

If you'd like to learn more about what research we fund on focal therapy and HIFU, you might be interested in visiting our new webpages.

We're trialling these focal therapy pages, and also some new pages on our clinical trials, as a new way for our supporters to learn about the research topics we're most excited about.

We want to make sure the new pages are as useful and easy to understand as possible, so we'd also love to hear what you think, and use your feedback to improve the pages.

If you'd like to give us some feedback, please visit the pages and then complete a 10 minute survey - you can find more information, and the surveys here.

Thank you,

Ruby

Research communications officer

Prostate Cancer UK

User

Posted 20 Apr 2019 at 15:35

I guess his case was borderline for hifu and that is what he wanted to try first. Anyway, we found out his PCa has recurred on the right side and same Gleason as before 4+3. No spread to the left. I imagine it’s an area that was missed with the first treatment. They’ve offered another hifu treatment so he has opted for that. If it doesn’t work I imagine he’ll have to go for RP.

User

Posted 14 May 2019 at 12:09

Hi Barry, thanks for your time and courage and posting this. I was recently diagnosed with prostate cancer and HIFU is being suggested. I am thankkful that this appears to have been noticed early. From what i read through the threads, HIFU appears to be a treatment option that works with some discomfort post op. My question, is centered around the quality of life thereafter.

User

Posted 14 May 2019 at 23:38

Can't answer your question as I had HT/RT which led to ED and loss in size of penis prior to having HIFU. However, I can say that after the bruising I experienced with HIFU I had no further adverse side effects. A few men experience a blockage after HIFU and occasionally a fistula has formed but less so now that HIFU it used to ablate only small tumour(s) and generally only a small number number of significant ones. You need to obtain appointment with focal specialist. If you can be referred you may be able have the treatment at no cost within a trial. Suggest you contact UCLH in this respect. The team there are very experienced, although I found their admin is slow and there have been clerical errors.

I was hoping to have a small tumour treated by further HIFU but it is too close to my rectum for this. Strangely, my PSA lowered a little after a template biopsy towards the end of last year. I wonder whether this was due to a substantial part of the tumour having been removed by the biopsy? (It was said to be only 2mm and the surgeon told me before the biopsy that despite the MRI, he "would do well to hit it"). Anyway, I will note next couple of PSA results and if these increase investigate the possibility of having the tumour treated by Focal Laser Ablation (FLA) privately abroad as it is not available in the UK. it is claimed that FLA can treat nearer to critical organs than HIFU.

Barry

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