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Focal Laser Ablation

User
Posted 03 Aug 2018 at 23:27

Originally Posted by: Online Community Member
Very interesting story.

Had never heard of FLA before, which is a bit annoying as I would maybe have been a good candidate. But too late now having gone the radical route. Don't suppose it would have been financially practical either as suspect AXA PPP would have considered it a "lifestyle choice" too.

Anyway, very happy to hear it's worked for you.

Nick

 

thank you Nick, I do think a summary of every possibility re treatment would be a useful addition to the toolkit provided by PCUK. easy access to full info would be preference.

 

only 16 months post for us with a lifetime of monitoring but no Regrets about goving this a go.. 

 

regards

Clare

 

 

User
Posted 08 Aug 2018 at 01:37

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) 

 

 

User
Posted 08 Aug 2018 at 01:53
Brilliant news
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Aug 2018 at 11:13

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

Barry
User
Posted 08 Aug 2018 at 20:54

I agree Barry, for those who want to know everything that’s happening employing someone to do the research and keep bang up to date with everything would in my opinion be a really valuable resource. 

All the best with your journey Barry.. keep pioneering 

User
Posted 07 Dec 2018 at 00:38

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

User
Posted 07 Dec 2018 at 02:28
Link doesn't work for me Clare?
Barry
User
Posted 07 Dec 2018 at 20:56
oops sorry Barry.. blooming phone!
User
Posted 08 Dec 2018 at 00:56
Thank you for editing Clare - I have now been able to listen to the lecture which I found very interesting. FLA adds another potential option to ways of treating PCa confined to the Prostate. As with Nanoknife IRE, it is relatively new but is regarded as experimental and not yet widely trialed, so the medium to long term success has yet to be established. It is quite often the case that it takes a long time to approve new treatments in the UK and I think it unlikely that FLA will be an exception to this. This means that anybody deciding that he would like this treatment will most likely have to go abroad as A did. Even to do this it means a man must establish that it is likely to be better or more appropriate for him than what is already on offer in the UK. I think it very unlikely that in the UK there are many Consultants that are sufficiently aware of FLA and Nanoknife IRE to give considered guidance. So unless a man has done considerable research himself (or had a proactive researcher working for him), and can fund the treatment, I think the numbers going abroad for FLA will be very small at least for some time. However, I have noted from an American/International forum I am on that an increasing number of men are having FLA, mostly in Mexico to the best of my recollection.
Barry
User
Posted 08 Jan 2019 at 00:07

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

 

User
Posted 08 Jan 2019 at 06:33
Great start to the year, Claret - really pleased for you.

I am not having such a good day; currently embroiled in a row at departure gate regarding my hand luggage which is within the required measurements but does not pass the mini-dictator's new cardboard box test even though it was okay on the first leg of my flight. A battle of nerves is commencing.

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

User
Posted 08 Jan 2019 at 07:17

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

User
Posted 08 Jan 2019 at 08:20

Great news Clare.

Happy 2019!

Ian

Ido4

User
Posted 08 Jan 2019 at 18:25

Thank you Ian

and to you as well

Clare

User
Posted 10 Jan 2019 at 00:37

Discovered an example of a reoccurence after FLA on another site and after ’losing the detail’ once thought i’d stick it here as the proposed trearmenr combo looked different to anytbing else i have read

So all well us us, A PSA is continuing to drop rhis us just a note to self re:

 

In April 2018 I had a follow up MRI to the 2016 clinical trial FLA by Dr. ( Removed by me) in Holland. For 2 years I had quarterly PSAs, semi-annual MRIs and annual MRIs including 3 guided biopsies of the previously ablated area (even if nothing was indicated on the MRI). My MRIs were all by Dr. ( Removed) in Chattanooga who I (and many others, including doctors) regard as one of the best radiologists. All was good until last April (2018).

My shocking results:

1. Gleason 9 in all 3 needles from the previously removed left side site targeted by the FLA. NOTHING showed on the MRI and Dr. ( Removed)  only did the biopsy because it was required by the clinical trial ("If there's nothing visible, I can't stick it").

2. Gleason 8 in both (2) needles of a new and very small right side area that was visible on the MRI.

3. 6 months previously in October 2017, NOTHING showed on either side in my semi-annual MRI only (no biopsy required by the clinical trial).

4. I was in denial and thought my biopsy samples must have been switched (such things can happen). Wrong.

5. I requested a second opinion of the biopsy by Dr.  ( Removed) of Johns Hopkins (recognized as one of the best pathologists). Diagnosis confirmed.

Following a PET/Axumin scan by Dr.  ( Removed) in June, nothing was detected in nearby bones or lymph nodes (some good news!). My prostate oncologist (Dr. Removedin Los Angeles) then recommended a trifecta treatment:

1. ADT with Lupron/Casodex for 12 months starting immediately (June 28).
2. HDR Brachytherapy (one shot) following 2 months of the ADT. Done by Dr. ( Removed) at UCLA on September 11.
3. EBRT (25 shots) at a local facility in NC beginning 3 weeks following the HDR (in case any extra-capsular involvement was undetected by the PET scan).

At 6 weeks following my last EBRT treatment, my PSA is <0.1. So far so good but I will be actively monitoring the rest of my life. I have a follow up in July 2019 with DR removed(oncologist at Duke) to determine whether my ADT should be extended an additional 6 months (to 18 total).

In retrospect, it seems the FLA did not completely remove the cancer in my left lobe, even though Dr.( removed)  removed nearly all prostate tissue from that side. And a new lesion emerged suddenly (i.e. clear MRI to a G8 in 6 months) in the right side. Hopefully the combination of ADT, HDR Brachy and EBRT will work. Thank you God that I had all of the diagnostic follow-ups required by the clinical trial which hopefully caught the situation early.

 

User
Posted 10 Jan 2019 at 00:56

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

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

User
Posted 11 Jan 2019 at 03:30

Hi Clare,

We have had private exchanges on FLA about which I will not go into detail other than to say here for general interest that I am very pleased it seems to have served Andy well and that I have been researching this as possible treatment for myself. The recent case you quote is of concern and this review is disappointing also, https://euoncology.europeanurology.com/article/S2588-9311(18)30021-X/fulltext

However, with all treatments there will be failures which are likely to improve with experience and better technique. My understanding is that better results are obtained with the 'in bore' procedure which I believe A had rather than the 'fusion' technique and this could account for some variance.

A recent MRI and biopsy I had shows a very small tumour of Gleason 3+4 which it is proposed to monitor and treat systemically with HT in need because it's location within the Prostate is too close to the rectum to treat with HIFU due to likelyhood of strictures and damage. (This also applies to Nanoknife IRE because the precise extent of the of the electrical charge is not determined or determinable) Similarly, Cryotherapy is ruled out. But practitioners claim FLA is far more precise and controllable so is able to be administered much closer to the rectum. So unless this small tumour, said to be the size of a grain of rice, can be cut out and without risk of incontinence, I think FLA is my only radical option. It is at least repeatable if needed. Unfortunately, not only is the outcome uncertain but FLA in my case could be overtreatment. Anyone got a Crystal Ball ?

Edited by member 11 Jan 2019 at 03:31  | Reason: Not specified

Barry
User
Posted 04 Apr 2019 at 00:02
Hi all,

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.

User
Posted 04 Apr 2019 at 01:23
Great news - now the challenge will be to move towards 6 monthly checks as time goes by ... easy for me to say since John has never progressed beyond 3 monthly :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 04 Apr 2019 at 06:02
Great news Clare. Proved a superb decision all round I reckon x

If life gives you lemons , then make lemonade

User
Posted 08 Apr 2019 at 21:27
Thanks both

Continue to be happy with our decision to get on that plane two years ago. I am really pleased to read the Prostate cancer UK are funding research into focal therapy.

For me I am struggling to agree to the 6 monthly PSA test. A would do what the consultant advises so it’s definitely me struggling to let go of 4 monthly checks!

For those with a low risk diagnosis a focal treatment is worth considering in my view. We have avoided an overtreatment which we were concerned we were being pushed into. We may have avoided an undertrreatment too as AS was on offer too.

I do think the UK needs a middle ground option for those in the same situation as A.

User
Posted 21 Oct 2019 at 20:19

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.

 

 

User
Posted 21 Oct 2019 at 21:21

Great report. I think one of the reasons there is no real appetite for researching FLA in England is that the NHS / NICE are trying to get the message across that G6 will be fine with active surveillance and does not need radical treatment; funding research on a radical option would be counter-productive.

Out of interest, are you willing to post how much the FLA cost you?

Edited by member 21 Oct 2019 at 21:22  | Reason: Not specified

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

User
Posted 21 Oct 2019 at 23:36

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

Barry
User
Posted 22 Oct 2019 at 10:35

Thanks for sharing your detailed report. It appears to have been a great success for you with very limited side effects.

Ido4

User
Posted 22 Oct 2019 at 19:09

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.

 

 

User
Posted 23 Oct 2019 at 20:14

Small correction in charges   3TmpMRI/Biopsy cost $5000, follow up MRI and prostate health check $2500

User
Posted 23 Oct 2019 at 20:37

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

User
Posted 23 Oct 2019 at 23:13
Yes it was the Sperling Clinic I was thinking of, having previously studied their web site and the advantages of the procedure. I note they also have a branch in New York. The reports by Americans on another forum who have had FLA are generally good but as I previously said, all treatments have some failures, perhaps because in some cases patients are not ideal candidates, which is not always definitively known at the time.

Barry
User
Posted 24 Oct 2019 at 17:48

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

User
Posted 18 Nov 2019 at 23:02

Just an update to report though the news could be a lot worse we have had a hiccough..

so latest PSA result came in at 1.6 a rise which led to a second biopsy  ( three years after diagnosing biopsy). Results today has shown Gleason 3+4 in 2 Cores .So A needs a second treatment.

Our prof in London is happy to do a focal HIFU . Also referred to talk to a surgeon who specialises in RP after focal treatment should A choose to lose it.

We have shared MpMRI scan with US consultant who did the FLA  he agreed a new biopsy was needed so we will share results for his opinion too.

So not what we wanted to hear but grateful for the surveillance picking it up

she is confident a focal HIFU is a valid option and that a RP would still be an option down the road if needed (1/15 apparently will still end up with a RP)

she said incontinence risk was very low

With regards to ED she said 1/3 would need tablets.Having used Levitra whilst A recovered from the FLA that no longer seems like a bogeyman.

A decision to be made but a couple of consults first. As I said I know despite this setback A is v lucky compared to many. 

Claret

 

 

User
Posted 20 Nov 2019 at 02:53
So sorry the FLA has not done the job for A and I think it makes sense to obtain other expert opinions on what might be the best way forward now. We are interested in what is decided and hope that it will give a better long term result.
Barry
User
Posted 20 Nov 2019 at 05:56
So sorry to hear this Clare. It seems you never can get rid of this disease totally. Good luck moving forward.

If life gives you lemons , then make lemonade

User
Posted 03 Dec 2019 at 00:42
So decisions decisions

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.

User
Posted 03 Dec 2019 at 02:22

Clare,

I know you and A are looking for best treatment with minimal side effects, Before making the treatment decision you might want to look at two advances on the probe system used on me and I expect would be used on A, namely the Sonablate. I suggest you look at the comparison made between TULSA PRO v HIFU made by my Heidelberg Hospital and DKFZ which I previously posted as the second link in the following link in July https://community.prostatecanceruk.org/posts/t21556-TULSA-PRO-V-HIFU

There is also said to be another advance on the HIFU machine called the Exablate so might be worth looking into this too.

Very interested to learn how you see it and what A opts for.

Edited by member 03 Dec 2019 at 02:44  | Reason: Not specified

Barry
User
Posted 03 Dec 2019 at 22:31
Thank you Barry

Very much appreciated.

Things do seem to be developing in the focal world!

Regards

Clsre

 
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