Focal Laser Ablation

Just to confirm following an enquiry A’s experience following low risk Gleason 6 duagnosis

No incontinence issues

Erections as per before the procedure

PIRAD 4 down to PIRAD 2 ( 12 month scan)

PSA 3.56 down to PSA 1.44

UK consultant doing surveillance says no sign of anything suspicious on scan and has him on 4 month PSA tests

Orgasms are now dry ( was warned was case in 30% of treatment) 

Hi Clare,

Very happy for you and A that result is looking good.

I agree with your penultimate post that it would be a good idea for PCUK to include all treatments used for PCa. Indeed it would be useful also if the success rates for these treatments for various stages over set times or for as long as new treatments have been provided could be tabulated. I appreciate that this could be a major task but would be helpful for men considering treatment.  As more treatments become available it becomes increasingly difficult to make a treatment decision. This is not helped by the fact that many Consultants seem to know little about some outside those they normally offer.

We know that there are variable factors that can make a particular treatment more or less suitable for individual men and as always this must be taken into account when considering options along with potential side effects and need to go outside the NHS for some treatments and all that that implies.

Edited by member 08 Aug 2018 at 11:17  | Reason: Not specified

FLA Interview from AUA 2018 Conference:

Here is a video clip on PCa focal treatments and FLA, in particular. It includes interim outcomes after 8 years from a 20 year FLA trial:

https://www.urotoday.com/video-lectures/prostate-cancer/video/mediaitem/108 8-embedded-media2018-11-15-21-05-49.html

Edited by member 07 Dec 2018 at 20:55  | Reason: Not specified

21 month post FLA PSA test came in today at 1.32 which is the lowest yet

at diagnosis 3.56

Pattern since

1.85

1.44

1.32

Phew.. PSA test stress is very real, even with a low risk diagnosis. 

next step for us is 24 month consult at the end of March!.

Still no regrets with our alternative path therefore. 

Clare

Oh no!

good luck with that!

i once held up an airport queue in New Zealan d as thet were trying to charge us £1.000 in excess luggage. i opened every suitcase and the kids and I put on extra items of clothes ( it was a 20 minute internal flight anf the didn't mention the weight restriction reduced despote the uk return and the internal flight all being booked together! ) and kept being reweighed until each suitcase was under. A wouldn't play bar tieing a jumper round his waist but myself and 3 20 odd year olds ( son, his girlfiend and our daughter) went for it!

i wore a's jeans over 5 layers of bottoms on that flight with his belt keeping things up and we paid no excess luggage ( binned 1 towel only). Repacked in Auchland before we returned.

doesn't help you but you brought back a memoty!  airlines! what a mare.. hope you sort it out 

thanks Lyn

Clare

Edited by member 08 Jan 2019 at 07:19  | Reason: Spellinh

The most interesting thing is that he was able to have brachytherapy despite the FLA, which makes this an even more appealing option for the future! Only time will tell whether it was the FLA that accelerated the differentiation of cancerous cells ... or that ablation makes MRI unreliable :-/

It is a shame that he hasn't given details of how his PSA was behaving between Oct 17 and April 18. Does this change anything for you in terms of how you would like your man to be monitored? Since he isn't on that trial, had there been any discussion about periodic biopsies in the future?

Edited by member 10 Jan 2019 at 00:57  | Reason: Not specified

Well 2 years since A’s FLA in Florida and the PSA test yesterday came in at 1.34. No problems with erections or urination so all good.

The consultant suggested he could move to 6 monthly PSA tests but that stressed me given his family history and that he still has his prostate so she agreed he could stay on 4 monthly tests but said he wouldn’t need a consult for 12 months so he can have PSA tests at the GP if he prefers.

So no news really but wanted to share. Been so so busy this year I have not kept up with the threads but best wishes to all.

Hi all thought I would post a message to share my experience of Focal Laser Ablation (FLA).

Like many men I was not attracted by the side-effects of the NHS gold standard treatments. Following many hours of research for alternative treatments I came across FLA and was impressed by the speed of treatment and reduced risk of incontinence and erectile problems. In 2016 I decided to attend the Sperling Prostate Centre in Miami and found myself in the company of many men all having arrived at the same point following extensive research. 

Sperling have a great web site and having been through the treatment I can confirm the information provided is accurate with my experience of the service offered. More specifically I attended the centre on two days - the first for a 3T mpMRI guided biopsy which located three spots of Glesson six prostate cancer, my PSA at the time was 5.4. - the second for focal laser ablation. The second visit took three hours equally divided between preparation, ablation and recovery. Being an out patient treatment performed using local anaesthetic of prostate, I was able to leave the centre after treatment and  take a taxi back to my hotel. The treatment was painless and I was able to go for a three mile walk the next day. I chose to have a catheter inserted just in case of any problem while flying back to UK. I travelled back to Miami six months later for a check to ensure no PCa had been missed, which would have been retreated should it have been necessary.

Since the treatment I have my PSA checked six monthly and have an annual  3T mpMRI at St John and Elizabeth hospital London. I then upload the scan to the Sperling Centre who check to ensure I remain clear of PCa, the London hospital , who also specialise in scanning for PCa, provide me with a second opinion. I feel that interpretation of the MRI scans by radiologists experienced in the prostate is essential for peace of mind. To date I remain clear of PCa. My PSA dropped to 3 after ablation, as I still have BPH and has now stabilised at 3.5. I will soon need to attend to my BPH to avoid future damage to my kidneys. I will consider FLA again.

I cannot understand why the private sector health service have not introduced FLA to this country.  Indeed now that the outcome results of many years of the FLA treatment  are available, why are the NHS running their own   trial. I have pressed my own local health authority on this matter without success , I have even had a question asked in parliament by my MP without success.  Surely this treatment would save the national health service millions.

Also, in the UK it is typical that more experience is required before introducing new procedures, which means we are often well behind other countries. The NICE delayed approval for HIFU within the NHS (other than in clinical trials) has been a case in point. It's been the same for some of the advanced scan which have been taken up earlier and more extensively in some other countries.

As previously stated, I am contemplated having FLA because it has been said that there is less collateral damage than other Focal Therapies or various forms of RT, which can be a particular advantage in some cases. Apparently, calcification is also less of a problem with FLA than for HIFU.

My understanding is that where FLA is unsuccessful it can where appropriate be repeated. Would repeat FLA mean having to pay the full amount again or can you cover this possibility through insurance I wonder?

Good to learn A continues to do well Clare and interesting post by Geoff P

Edited by member 21 Oct 2019 at 23:42  | Reason: Not specified

No problem Lyn.

I took a last minute holiday package with my wife to Miami around £4k. Sallyann thought we should make the most of the trip . I scheduled the start of my treatment 4 days before returning, to minimise any risk of stateside medical cost. I took out 2 bank cheques $2500 for 3TmpMRI/guided biopsy and $25000 for FLA.

At the time of my visit I didn't know if I had PCa, I only had suspicions based upon a sharp increase in my PSA. I had no confidence in a blind biopsy and did not want to get on the NHS treatment treadmill with the associated pressure. Things have moved on over the past 3 years and in the same situation I would now have a 3TmpMRI in UK at a hospital specialising in prostate conditions. The St John and St Elizabeth hospital in London is such a centre, they check all organs and skeleton beneath the ribs to above the knees for £750. I would then upload the scan to the Sperling Centre prior to discussing my situation.

The Sperling Centre is a very professional organisation and I have no reservation in recommending them. One cannot put a price on quality of life, that's why we decided I could raid our joint piggy bank.

Hi Barry

The Sperling clinic confirmed to me that it was possible to have repeat treatment using FLA, if in future there were further lesions within the prostate. They also confirmed that they had treated Gleason seven and eight lesions.

The Sperling clinic assesses my MRI scans each year free of charge as part of my treatment follow-up. I believe it is possible to upload a 3TmpMRI scan to the clinic and discuss treatment options at no charge, this would be a good confidence builder if in doubt.

The Sperling Centre run a very good monthly blog on the latest developments in prostate research and treatment that can be linked to via their web site. They are also involved in research.

Geoff

Hi Barry looking back of your previous post I noted the position of your small problem and thoughts around treatment. From my reading around the subject  and discussions with the Sperling Clinic, I agree with your assessment of the control possible during FLA. The heat pattern caused by the laser is monitored in real time by the radiologist while the patient is within the tube of MRI.  Safety zones are set up prior to treatment, so that any adverse increase of temperature in sensitive areas close to the ablation site immediately switches of the laser.

 I was anxious before travelling to the states but my research found no chatter about serious problems and the USA is a very litigious place. I assessed the biggest risk to be financial as one cannot get medical insurance if travelling for medical treatment. While this impact could be high however, I judged the probability to be low given the nature of the treatment. In the end I found the prospect of over treatment with associated side effects within the NHS of greater concern. The Sperling Centre would have carried out several thousand procedures by now.

Geoff

Two consultations in. Both consultants agree we need to do something and all options are available.

So a Focal HIFU is on the table and today we met with the recommended surgeon for removing a treated prostate. He has removed all types of treated prostate except for A’s Focal Laser Ablation treated one. From the scan however he said A’s prostate was in the best shape of any treated prostate he had seen, other than the large area of atrophy from the ablation it looks normal apparently.

He is happy to remove it if that is what we decide but will still remove it after further focal treatment if necessary.

He uses neurosafe so would have it biopsied during the procedure which could lead to losing a nerve bundle if there was a positive margin.

He was very upfront about the risks and shared his stats.

So best to expect 1 pad a day is a good outcome

Best to expect loss of length ( but use of pump can resolve this apparently)

Pills will be needed- good outcome

Injections can be used if outcome not so good

A’s orgasm is already dry but after a RP he could organism urine.

Nothing we didn’t know from membership of this forum.

So very informative and experienced but A not sure he is ready to give up his prostate.

So may be headed for another focal treatment - could be a HIFU. We discussed risk of fistula and were told 1/900 but not on her watch.

Due to discuss repeat FLA as our final consult but a decision has to be made.

Recovery from this biopsy has been a walk in park compared to the first. No bruising or passing / orgasming blood this time. Same procedure, different consultant. Not sure why the difference in recovery.

Very much appreciated.

Things do seem to be developing in the focal world!

Regards

Clsre

Thanks Barry and Lynne, I think I will follow Barry’s suggestion.

Neither consultant can confirm if it’s a reoccurrence or a new tumour on the same side as the large ablation. The small ones on the other side are showing no life.

it was one of things we would have liked to know but not looking like we will get an answer. To be fair he always said a second go can be needed and contracts a repeat fee up front so it wasn’t like we were promised a cure. However given the focal HIFU option it seems sensible to stick with the one team.

Thanks both

Clare

Thanks Lynn and Chris

He is in surgery now so just waiting for me at the moment. 

I will document to the outcome.

Regards

Clare