Focal Laser Ablation

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.

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

User

Posted 18 Jan 2020 at 09:16

Hi all

Just an admin point as we move on to a new treatment should I start a new thread or just carry on with this one?

So following an increase in PSA to 1.6, a Biopsy showing a tumour graded at G7 (3+4) ( much smaller than the original) we have been given the following options:

active surveillance is off the table now with all agreeing something needs to be done

surgery - we could opt for a RP and have consulted with a surgeon specialising in removing prostates after focal treatment who was very impressive and offers NeuroSafe but we have decided we are not ready for that and he says another focal treatment will still leave an RP with him on the table.

we have consulted with the original FLA consultant from Florida who said he would treat with another FLA if we want to return ($4,000 for a repeat so a lot cheaper). We also took the opportunity to discuss the focal HIFU option with him and he was clear that this option in his opinion would be just as effective. The 201& published UK clinical trial results are available now which they were not when we first opted for FLA.

Our monitoring professor has offered a focal HIFU under BUPA in London and this is now a decision made and pre assessments were done yesterday for the procedure on 23rd January.

The FLA was done under local anaesthetic but the focal HIFU will be a general which has pleased A as the catheter will be fitted whilst asleep this time! Apparently he gets a tap not a bag too., told he will be fine to wear Jeans etc and to expect to need the catheter for 4 days. Already booked in for TWOC a week on Monday!

So a new plan and continuing to try to avoid both under treatment and over treatment.

Pleased we did something in 2017 as AS would have been an under treatment clearly but still not ready to go radical as maybe an over treatment for this small G7 (3+4).

Anybody with recent experience of a focal HIFU would love to hear your story

We are very confident that the Prof will sort and grateful for the dedication by the UCHL team for pursuing this middle ground approach.

Any advise on starting a new thread or continuing here- unsure of protocols.

Thanks

Clare

User

Posted 18 Jan 2020 at 11:28

I think you can do whatever you like with your own thread, the protocols are fluffy about that kind of thing. If the main purpose is to record your story from start to finish then it seems sensible to keep it all here where the twists and turns will be interesting for others. On the other hand, if I was a new person here interested in alternative treatments, a quick search for ’focal’ or ‘FLA’ would bring me straight to this thread but a search for ‘focal salvage treatment’ or ‘salvage HIFU’ might not.

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

User

Posted 18 Jan 2020 at 14:39

Hi Clare,

As regards posting 'A's treatment and progress you might consider dealing with it as follows :-

Start a new heading something like 'Follow up Treatment by HIFU'

Start the post by giving a link to your previous thread so those that are interested may refer back to the treatment and situation so far and then continue regarding the story from now. Having done that, I suggest you go back to the old thread and say because of the HIFU treatment planned you are continuing with a new thread (Follow up Treatment by HIFU) or whatever you head it and give the link to the new thread. You might add that anybody who wishes to ask a question about FLA could use your old thread. Alternatively, you could of course just continue with this current one if you wish.

Before (possibly) starting a new thread I ask whether you have ascertained if the FLA eradicated 'A's tumour but not completely or whether new tumours have grown in another part of the Prostate rather than was treated by FLA?

I will defer replying about HIFU for the time being in case you start a new thread.

Barry

User

Posted 18 Jan 2020 at 15:09

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

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