HIFU, my experience

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

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 Apr 2019 at 11:50

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 05:55

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

User

Posted 04 Apr 2019 at 00:21

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 12:21

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 16:35

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 13:09

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 15 May 2019 at 00:38

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

User

Posted 15 May 2019 at 09:04

Hi Barry,

thank you for replying. It has given me good insight. Once I figure out how to put more information about my prognosis on my profile from my hand held device, I will.

I have been going to Cromwell hospital and seeing a surgeon by the name of Dr Hashim Ahmed. He’s been courteous, professional and very detailed. I am getting a second opinion at the London Hospital.

Because of what I feel is a favourable review of the treatment for this (HIFU), I wanted to get as much post op information as I can get. If I can find someone who has a similar situation, first time, small tumour who had HIFU, it may put me at ease.

Thank you

Frank

User

Posted 15 May 2019 at 14:29

Frank,

We are not supposed to name our consultants on this forum but before the name you gave is removed, I can confirm that consultant is one of the leading exponents of HIFU as is Professor M E who also is in Private Practice as well as being at UCLH. You may find it of interest to scroll down to videos in this and read the blog. http://www.ahamm.co.uk/prostate/blogdetails.htm

Edited by member 15 May 2019 at 14:30 | Reason: Not specified

Barry

User

Posted 15 May 2019 at 14:35

Im sorry, I wont do that again and will read the bi-laws here. Again, as I am a big believer in sites like this, I've meant no disrespect to the group

Ive deleted the original post and have inserted the post without the surgeons name>

(thank you Barry)

Hi Barry,

thank you for replying. It has given me good insight. Once I figure out how to put more information about my prognosis on my profile from my hand held device, I will.

I have been going to Cromwell hospital and my doctor has been courteous, professional and very detailed. I am getting a second opinion at the London Bridge Hospital.

Thank you

Frank

Edited by member 15 May 2019 at 14:38 | Reason: Not specified

User

Posted 11 Jun 2019 at 04:09

Latest psa (June 2019) still 0.07

User

Posted 11 Jun 2019 at 09:07

Great result.

Best wishes,

Ido4

User

Posted 11 Jun 2019 at 12:24

For a suitable patient this can be a great treatment and always good to learn men are doing well regardless of what treatment they have.

Barry

User

Posted 02 Jul 2019 at 07:36

Originally Posted by: Online Community Member

Unfortunately, a small new tumour is said to be too close to my rectum fortreating with HIFU.

A while back I know, but another thread you just commented on made me search back for this.

Would having a biodegradeable spacer (such as SpaceOAR) inserted help by spacing the prostate away from the rectum by 10mm or so? This presumes HIFU would work through it - being mainly water, I can't see why it wouldn't, but when having HDR brachytherapy where installing the dosing tubes is guided by ultrasound, they have to insert the tubes under ultrasound guidance before injecting SpaceOAR, so maybe there are some limitations with using SpaceOAR with ultrasound?

User

Posted 02 Jul 2019 at 11:56

Thanks for the thought about Space Oar Andy which I did mention on another thread and will ask when I have a telephone appointment with UCLH tomorrow. It is possible that because HIFU produces heat this might be transferred to the Space Oar and thence inwards so might act as a conductor but the question needs answering, if not for me for others. Actually, there is another reason why I am not suitable for HIFU as there is calcification to get through.

It is interesting that when I had my template biopsy in December last my PSA dropped slightly and I wonder whether this was because the needles removed part of what was a small tumour. (My PSA has since moved up again slightly)

I am inclined to wait the outcome of a further PSA test in 3 months time and if there is significant increase to investigate the possibility of Focal Laser Ablation (FLA) but this most probably would mean going abroad, most likely to the USA. As I understand it, the laser is directed through rods right up to the target. The over-spill (if I can put it that way), is less than with HIFU so it might just be possible that I would be suitable. The husband of another member (Claret username) had FLA in the USA and is doing well but he had it as a primary treatment.

Naturally, I will post any further thoughts/developments.

PS. For anybody who is interested this is some info from another much larger forum where I am a member. It is largely used by the men of the USA but does have members from all over the world. Without signing up as a member (which is free) you may not get full access :- https://www.inspire.com/groups/us-too-prostate-cancer/discussion/hifu-vs-fla/

Edited by moderator 06 Jul 2023 at 10:57 | Reason: Not specified

Barry

User

Posted 05 Jul 2019 at 20:18

I did take the opportunity to ask the team member at my telephone appointment with UCLH on the 3rd July about the possibility of Space Oar being used as a barrier between Prostate and other organs for patients having HIFU. I was told that it had been tried experimentally with a very few patients but it had gone straight through the Space Oar. So it would seem not to be a success with this form of treatment.

Barry

User

Posted 22 Dec 2022 at 22:03

Hi Barry just seen all your posts and replies about HIFU , did not know you had been through all this when you mailed me,all very interesting ,seems to have been successful which is good.

nick

User

Posted 23 Dec 2022 at 05:39

Hi Nick,

All 3 PSA tests I have had this year following the second HIFU last December have come out as 0.02. This is the lowest figure since I was diagnosed in 2007. I was to have had a check up MRI scan a few days ago at UCLH and I drove to my daughter's place in Surrey to enable a shorter journey to the hospital the next day, only to find a voice mail saying the scanner had broken and I would need another appointment.

So looks like another near 500 total miles of driving in the new year. Some might ask why go to London for an MRI that I could have done at my local hospital which is only 10 miles away. In fact I did ask my Consultant this previously and was told that UCLH do the best scans in Europe and this was due to the sequencing.

PS. Some reading through this thread may wonder how I was able to get a second HIFU when I had been told by the top man that I would not be given another as my Prostate had already been subjected to RT and HIFU, also, that the small tumour was near my rectum and there was some calcification. Some months on during a telephone check up appointment, I asked a Doctor if I could be treated within a trial for Photodynamic Treatment as I was heading for HT which I was keen to avoid. I was subsequently contacted by the Chief Investigator for this trial who coincidentally was the Professor who did my first HIFU. She told me that my particular prior treatment meant that I did not meet the requirements of this trial but said she would do a repeat HIFU subject to a satisfactory MRI and my passing preop requirements and was prepared for potential adverse side effects. This was a huge volt face which I grasped!!

Edited by member 23 Dec 2022 at 14:34 | Reason: Not specified

Barry

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