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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

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
 
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