Blue light focal laser treatment

User

Posted 11 Dec 2016 at 11:50

Hi all,

Very early days for us. My husbands PSA came in at 3.5 at company medical so was repeated by GP who got the same result.

Referred to urologist who has sent off a urine sample did a contrast MRI and booked husband for biopsy ( FiL died of PC in June) . Just before general anaesthetic he said the MRI showed abnormalities so he was aimi g for those areas.

Awaiting results now and researching. Urologist is a big advocate of surgery.

I am looking to understand what else is available. I see the Sperling clinic in New York offers this blue light focal ablation treatment and there has been a clinical trial in the UK ..,anyone know anything about availability in UK?

User

Posted 31 Dec 2016 at 21:19

Chris,

No doubt Clare will advise but most probably from the results of the PROTEC T trial carried out in the UK. It has been reported on around the world and here in the New England Journal of Medicine. http://www.nejm.org/doi/full/10.1056/NEJMoa1606220#t=article

Although, at 10 years there was little to choose between the groups that had surgery, RT and AS, what I thought was an interesting difference was the significantly greater disease progression in the AS group and the need for treatment intervention in many cases for men in it. It would be interesting to see how in due course this greater disease progression in the AS group affects men over a longer period, say at 15 years for example, compared with those that received early surgery or RT.

Barry

User

Posted 01 Jan 2017 at 02:21

Hi there,

http://prostatecanceruk.org/about-us/news-and-views/2016/12/national-prostate-cancer-audit-results-most-men-happy-with-curative-treatment-but-overtreatment-still-a-problem

This is the link to the 14th December National prostate cancer audit results

It does include the protecT results from the UK which is a big deal for those with a low risk diagnosis and being advised surgery...

I too wish we had 20 year results, but pleased in 2006 someone got their act together to make these 10 year results happen and think the 2026 world of treatment for this disease is going to be radically different thanks to work bring pioneered today.

Prostate cancer UK doing a great job pushing NICE into reviewing the guidelines 2 years ahead of schedule.

Still found no evidence to support this decision to invest NHS resources so heavily in robotics though... Interesting!

I raise a New Year Toast to the work being done by Prostate Cancer UK pushing the boundaries and challenging the accepted.

Clare

User

Posted 20 Dec 2016 at 14:08

From what I read in press this morning it is not available yet on NHS as needs to be evaluated by NICE. 50 per cent of those treated were suceessful which presumably means 50 per cent weren't? No apparent long term side effects. Have you read the toolkit from this site for all options? Good luck with treatment which ever you choose.

Elajai

User

Posted 20 Dec 2016 at 23:03

I saw this on BBC news tonight and recognised the Professor at UCL (UCLH) as the leading UK authority on Focal Therapy, mainly HIFU. He is leading the FORECAST trial in which I had salvage HIFU last year, although he was not my surgeon. He and his team seem to be evaluating several forms of Focal Therapy. Just before I was treated they ended a trial on Nanoknife (Irreversable Electroporation) and now have this study on Focal Photodynamic Laser Therapy. My consultant wants me to be seen by this Professor at my March appointment and if this happens I will take the opportunity to ask how he sees the competing therapies. I suspect he is likely to say it's too soon to say and that some patients are likely to benefit more than others depending on their individual cases. http://www.bbc.co.uk/news/health-38304076 and http://www.nhs.uk/news/2016/12December/Pages/New-laser-therapy-for-low-risk-prostate-cancer-shows-promise.aspx

Edited by member 20 Dec 2016 at 23:12 | Reason: Not specified

Barry

User

Posted 21 Dec 2016 at 02:37

A G7 is medium risk. In the data I think they refer to G2 which is used in some overseas countries but not usually in the UK.

You misunderstand my comment about the minority. A minority of men would benefit from this type of treatment, not a minority of men have G6 at diagnosis.

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

User

Posted 30 Dec 2016 at 10:59

Hi Chris,

[name edited out by Moderator]has had our MRI and biopsy report prior to arranging a conference call with himself and nurse specialist.

He has confirmed my husband is a good candidate ? He takes on higher grade Gleason scores too)

The investment is USD 30,000

We have had initial talks with BUPA that did not write it out under the company scheme. However we are accepting of we go here in all likelihood it will be a self funded exercise.

Our BUPA surgeon has agreed to do the active surveillance psa testing and MPMRI going forward.

At the 6 month heck if you are in the 5% fail rate the re ablation is free. Surgery and or radiation are stil options if you wish to decline tre treatment.

I am talking to TOOkAd guys in an Israel too .. [name edited out by Moderator]agrees this is probably the most exciting new development. We are still in conversation but my husband has bilatterrsl disease and the clinic Al trials have focused on single side disease.

For the USd 30.000 you get [name edited out by Moderator] personally who has done over 1.000 procedures. No occurrence of ED or in contender reported.

Spoke to GP yesterday they have no issues either re referring for active surveillance referral on NHS after this private treatment if needed ( bit the bupa cancer guarantee is pretty sound)

Not decided .., going through the clinical data plus international forums for any bad press... Nothing so far. They are buddying us up with a UK patient who has been through it earlier this year.

Active surveillance still a preference for us from the standard list we were given.

Thanks

Clare

Edited by moderator 03 Jan 2017 at 10:21 | Reason: Not specified

User

Posted 30 Dec 2016 at 13:48

Hi Clare,

Just a bit more info from the leading Prof on focal therapy in the UK. My appointment with him has been brought forward to February and I will be asking whether the small tumour still believed to be in my Prostate could be dealt with by VTP and if so within the NHS if UCLH are willing and able to deliver. https://www.ucl.ac.uk/news/news-articles/1216/201216-prostate-cancer-light-therapy

Barry

User

Posted 31 Dec 2016 at 20:41

Hi Chris.

Re protecT trial

I was looking at data the other week .. ummmm

http://www.medscape.com/viewarticle/868791

I would welcome your view and others in new year.

I would like to see 20 year results.

And population appears to be Gleason 6. I need to analyse more. £39 million spend ???

User

Posted 13 Jan 2017 at 19:33

Interesting stuff but you have named the specialist another thrice even though the moderator has deleted all your previous ones :-(

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

User

Posted 13 Jan 2017 at 20:00

Hi Clare

Thanks for the update. I suggest you start a new post when you and OH start your journey, which will be very informative for other members. I suppose we should say that FLA is available at a variety of facilities in the USA.

Good luck with the journey. If I was at G6, I would definitely be considering it. I know they do accept G7, but having discussed it with the urologist, who is very well respected, I am going ahead with surgery - albeit reluctantly.

Chris

User

Posted 14 Jan 2017 at 11:08

I think you have misunderstood the nature of this forum - if you have grumbles about the information PCUK provides on their website, you need to take that up with them.

On these message boards you will find the things that members raise themselves - there are no threads about treatments in America simply because we haven't had any member in the last 8 years or so that has posted about (or actually gone for) PCa treatments in the USA

Having said that, most of the points you raise above I have posted on numerous times.

PS you state that the strength of erection can be impacted by biopsy - I think this is possibly true in a minority of cases but most likely down to worry/anxiety rather than any physiological cause. There is no mechanical reason for a biopsy to inhibit erections

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

User

Posted 19 Oct 2017 at 18:51

Bounce for bears daughter

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User

Posted 11 Dec 2016 at 16:48

Thank you so much Barry, that is really helpful. I suppose like for everyone it's all a steep learning curve despite having my father in laws experience it has come out of the blue as he has no symptoms is fit and well and it's only the company medical that has flagged this PSA test and at the first consult we are being introduced to the concept of dry orgasm and stats on incontinence post surgery..,

So I now want to learn quickly as if I had read up a week ago we would have travelled for a MpMrI but just took what we were offered this week.... Contrast MRI and straight into template biopsy.

So yes travelling is an option ... We just need the diagnosis but with a family history, a raised PSA and abnormalities on this weeks MRI we are preparing to get the cancer diagnosis but now want full information. Really appreciate the help Barry.

User

Posted 11 Dec 2016 at 19:35

Hi Claire

As Barry said, it's worth seeing what is available within your area but first wait for the results. This site is a fantastic resource, so take the time to read the posts particularly about diagnosis and treatment. in that way you will be fully prepared to ask the right questions at the diagnosis meeting, which will allow you to go away and consider your options.Best of luck,

Chris

User

Posted 11 Dec 2016 at 20:12

Clare,

I didn't mention this in my previous reply because it seems less likely in your husband's case from what you say but sadly PCa is not discovered in some men until it has advanced and metastasised. In some of these cases a common treatment is to have Hormone Therapy and according to developments Chemotherapy and other down the line treatments that treat systemically as those that only reach the prostate or just beyond can be of limited benefit.

There is no single 'best' treatment for PCa; there are pros and cons for each and it is important to consider not just how successful each may be for an individual in terms of slowing or better still curing the cancer but the potential side effects. So the question men should ask themselves is not 'what is the best treatment for PCa?' but 'what is the best treatment for me?' Different men even with similar PCa stats may well arrive at different conclusions. If going abroad, consideration has to be given to the possibility of several visits including a long one for some types of treatment. Some UK areas will not accept anyone treated privately coming back into their NHS area later for monitoring and subsequent treatment should this be needed.
Treatments for PCa have been considerably refined over recent years and this is ongoing. The single most important factor is early diagnosis.

Barry

User

Posted 11 Dec 2016 at 21:55

Oh sh%t,

My last post on this thread took ages to come up so I assumed it was not going to do so. Of course as soon as I tried again it double posted! I then tried to delete one of the two but instead it deleted my original reply to Clare. As least she did receive it previously although it's no longer there now.

Barry

User

Posted 11 Dec 2016 at 23:54

Thank you Chris and Barry,

I will definitely use this community, it has already been so informative and I really wish I'd visited it last week. I am reading the threads. Trying to master the lingo and am seeing that this cancer is a tricky tricky one.

With the PSA trigger test coming from a company medical we are curreny getting diagnosed privately via BUPA but that didnot get us an MpmRI scan as it doesn't appear we have one in the area. So the fundraising being done on this site is amazing - everyone should be getting this type of MRI before a biopsy in my opinion.,
Great advice re being careful on NHS v Private.. That hadn't crossed my mind. All we have used NHS for was the repeat PSA and referral from GP.., we may have been better off in NHS and need to understand all imitations...
So when we get the doagnosis we will listen to advice .. Our urologist is a top surgeon but I will want going forward to have full info and so I really appreciate the forum.

My father in law was a late diagnosis and had the hormone treatment chemo and radiotherapy route..,diagnosed 20 years older than my hubbie is today.

Thank you both so much.. For me I need to research to give me a feeling of control so I can keep it together.

User

Posted 14 Dec 2016 at 21:40

Gosh - waiting for a diagnosis does make time seem different! Biopsy was only last Thursday and I am going mad with the wait!

User

Posted 20 Dec 2016 at 09:55

Just seen on bbc really positive news about the European focal laser treatment for low risk prostate cancer.

Due to get results on Thursday

So far we know

53 years old
PSA 3.5
DRE showed nothing
MRI showed abnormalities
Biopsy results informally that it's not benign nor is is bad
Family history - his dad diagnosed advanced at 72 died at 78

Am def leaning to a focal laser solution ... Any thoughts?

User

Posted 20 Dec 2016 at 14:08

Elajai

User

Posted 20 Dec 2016 at 23:03

Edited by member 20 Dec 2016 at 23:12 | Reason: Not specified

Barry

User

Posted 21 Dec 2016 at 00:19

Hi Elijah,

Thank you' re toolkit reminder - I have indeed read all options ...it's been a learning curve but I do feel happier going in to the diagnosis understanding more so thank you to prostate cancer UK for this wonderful resource and indeed to all the contributors.

Clearly until we have the actual figures it's all academic but I have explored all focal treatments that I can find info on as well as all the currently available options.

I had a very detailed e mail replay from the Israeli company who make TOOKAD with the data of their definition of low risk , which may not apply to us but I prefer to know the data. You are correct it is not approved for use in the UK at the moment . To access it would involve a wait or a private trip overseas.

I think the guys taking part in the trial had no downside given they were low risk and of the 206 allocated to the TOOKAD treatment 100 are cancer free at the 2 year mark without the side effects of the traditional options... The 12 who ended up in surgery anyway are no worse off than with a traditional treatment choice - the rest are still being actively monitored is my understanding.

So all academic till Thursday for us but hopefully in the future it will mean less side effects for at least some and that seems to be the main upside to me.

Regards

Clare

User

Posted 21 Dec 2016 at 00:24

As far as I can see, they are suggesting that as a primary treatment it would only be suitable for men who currently would be encouraged to consider active surveillance, and/or G6 (3+3) or below ... since it is rare in the UK for men to be allocated less than a 3 this is only going to benefit a small minority of patients. Not then a future reduction in side effects for men with PCa that needs treatment but a possible drop in the number of men who opt for AS

Edited by member 21 Dec 2016 at 00:27 | Reason: Not specified

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

User

Posted 21 Dec 2016 at 00:53

Hi Lynn,

They say it's for Gleason 6 (3+3) but will consider Gleason 7 (3+4) but with other proviso's ! So yes it's a treatment for low risk PCa.

From the lancet figures 12 of the guys who had the new treatment ended up having surgery by the 2 year mark
62 of the active surveillance control group ended up having had surgery at the 2 year mark

But no help as you say to those with higher Gleason scores. Interested in your point re Diagnosis at Gleason 6 being a minority .. Are the stats available on this site as I haven't seen those yet.

My father in law was diagnosed with advanced prostate cancer at 72 but had never had a PSA until symptomatic so we will never know when it began for him ...

User

Posted 21 Dec 2016 at 02:37

A G7 is medium risk. In the data I think they refer to G2 which is used in some overseas countries but not usually in the UK.

You misunderstand my comment about the minority. A minority of men would benefit from this type of treatment, not a minority of men have G6 at diagnosis.

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

User

Posted 21 Dec 2016 at 11:02

This is what they have told me directly

'TOOKAD has been approved for use in Mexico and is also available in Israel under special permit.

The current indication for TOOKAD is for the treatment of localised prostate cancer Gleason ≤ 6; (Gleason 3+4 is acceptable provided that none of the biopsies indicate that it is present in more than 2 samples from a series of 12 or that no sample consists of 50% or more of cancer) with serum levels of Prostate Specific Antigen PSA < 10 ng/mL; clinical stage T1 to T2a'

Hopefully it will get approved across Europe so at least those in this category have a choice

Regards

Clare

User

Posted 30 Dec 2016 at 08:13

Just in case anybody is Iinterested we are seriously considering FLA i. The USA .

Spoke with [Name edited out by Moderator] yesterday

Not sure why the NHS put its recent investment in robotic surgery rather than MpMRI guided focal laser ...next thing on my list to research though ...

Edited by moderator 03 Jan 2017 at 10:17 | Reason: Not specified

User

Posted 30 Dec 2016 at 09:18

Hi Clare
I looked at [Name edited out by Moderator] site. Have you determined your husband's staging is acceptable for FLA? Did they indicate costs? What are the implications for post-treatment care back here in UK?
Have you looked at TOOKAD availability in EU?
Chris

Edited by moderator 03 Jan 2017 at 10:19 | Reason: Not specified

User

Posted 30 Dec 2016 at 10:59

Hi Chris,

[name edited out by Moderator]has had our MRI and biopsy report prior to arranging a conference call with himself and nurse specialist.

He has confirmed my husband is a good candidate ? He takes on higher grade Gleason scores too)

The investment is USD 30,000

We have had initial talks with BUPA that did not write it out under the company scheme. However we are accepting of we go here in all likelihood it will be a self funded exercise.

Our BUPA surgeon has agreed to do the active surveillance psa testing and MPMRI going forward.

At the 6 month heck if you are in the 5% fail rate the re ablation is free. Surgery and or radiation are stil options if you wish to decline tre treatment.

For the USd 30.000 you get [name edited out by Moderator] personally who has done over 1.000 procedures. No occurrence of ED or in contender reported.

Spoke to GP yesterday they have no issues either re referring for active surveillance referral on NHS after this private treatment if needed ( bit the bupa cancer guarantee is pretty sound)

Not decided .., going through the clinical data plus international forums for any bad press... Nothing so far. They are buddying us up with a UK patient who has been through it earlier this year.

Active surveillance still a preference for us from the standard list we were given.

Thanks

Clare

Edited by moderator 03 Jan 2017 at 10:21 | Reason: Not specified

User

Posted 30 Dec 2016 at 11:01

Oh - after FLA around 30%habe reduced or no semen ..,,

This is main side effect..,

User

Posted 30 Dec 2016 at 13:48

Hi Clare,

Barry

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