Blue light focal laser treatment

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.

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.

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.

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?

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

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

Will do Chris.

Barry that is very interesting - I know who you mean and he is on the BUPA list so we could request a second opinion from him but clearly need to walk a careful path with BUPA requests ... So far had the initial consult, urine tests, blood tests, MPMRI, template biopsy under general and follow up consult with surgeon for diagnosis

They have this cancer care guarantee but given the potential of asking for a FLA or TOOKAD overseas I am not going to ask for a uk second opinion ...yet

So would love to get piggy back intel from your Feb consult Barry! We are not making any quick decision as I say AS is most appealing to us ATM as for guys offered AS the 10 year survival rate is exactly the same for those taking it up as for those opting for surgery

But the piece of mind offered by an FLA or TOOKAD successful outcome would be better again... And the double blind TOOKAD v AS saw TOOKAD outperform active surveillance ( single side disease v my hubbies bilateral d3+3)

Hmmm...

I have not found a blind clinical test As v FLA though but Sperling have sent some links now...

All intel therefore gratefully received!

Fingers crossed for you both

Chris - yes I will do as you suggest and that is true there is available I a number of US centres plus being run as clinical trials at phase 2 in many more across the USA.

I am not trying to be controversial in any way but a thread on the growth of focal alternatives would have been helpful to me certainly when we first got the increased PsA result .

Things I would liked to have had more info about:

1. The diagnostic alternative approaches .This site was fab at explaining the push for Mp MRI scanning before biopsy but the wider this message is spread and the more demanding men are for access the better. Only from USA sites have I gleaned the difference between a 3T version and a a 1.5 ( lower resolution) version

2. The impact of a prostate biopsy was not explained I.e the strength of erection can be impacted after a biopsy so I think this should be spelt out.

3. The complete list of side effects of surgery was not spelt out. We had no mention made of impact on penus length or penal atrophy

4. Headline stats given on iED post surgery were presented in my opinion in a misleading way stating 86% success re ED but when the detail is looked at 45% never get an erection strong enough for penetrative sex again. All go forward drug dependent. These are stats of a top UK surgeon.

5. The definition of 'dry' after surgery is when you only use one pad a day-this is not how we would define dry.

6. The availability of focal treatments was not discussed. - surgery was recommended with an oncology referral. The over treatment issue of G6 was not mentioned ( though AS was on the list given as ways forward.

So our Dec 2016 experience has been interesting and. I think the UK has some way to go in urology before the standards we achieve in breast cancer care are reached.

Regards

Clare

Clare,

I can confirm that all the things you list have to a greater or lesser extent been discussed on this forum at some stage, sometimes on a number of occasions, except the possibility of Blue Light/VTP which has only recently been undertaken in the UK in a small trial which has now ended. This being a UK forum, it naturally majors on treatment that is available in the UK. (I did my own research to find a trial in Germany for the particular radiation treatment I wanted and I don't think anybody else here has had the Carbon iron element, so this has not otherwise been discussed). Reference to Proton Beam has also been lightly touched on as it has not been available in the UK.

One of the problems with this site which I have raised on more than one occasion, has been how poor the search facility is at providing relevant information being sought. Under the previously used format it was possible to search for information and find relevant threads. Having tried this a number of times with the current format, I find even using the filters there is so much unrelated bumph that I gave up. I have found it quicker to Google what I am looking for and this usually leads to a forum post. This shows how lacking the forum search facility is. I, like a number of others was opposed to the forum being made generally available to everybody rather than restricted to members as was the case with the previous format but admit this does help one find information more quickly and successfully.

Finally, I would say that when questions have been asked, members have done their best to answer and where appropriate give support, also posting on advances in treatment. Also, on your point about there being nothing on 3Tesla scans, I am not alone in having commented on these and other scans over a period of several years.

Hi Clare,

Well glad that that misunderstanding has been cleared up. I think it stemmed from your first point when you said 'Only from USA sites have I gleaned the difference between a 3T version and a 1.5 (lower resolution version)' and the rest we now know concerned the system, the information medical staff provide on diagnostic and treatment possibilities and possible consequences, rather than any criticism of this forum.

Most men with PCa have their treatment within the NHS and are not willing or able to have their treatment many miles away from their normal hospital yet alone going abroad. Furthermore, not all commissioners or whatever title the body controlling funds call themselves are prepared to fund treatments elsewhere that are not available in their area. There was one man on here awhile back who was even refused robotic surgery, it not being available in his area. Trials for more novel treatments often involve only a small number of men who meet a strict criteria and can involve them attending a limited number of centres often far from home. It is against this background that overloaded doctors really do not have the time to discuss all possibilities, some of them unproven or which they know little about, perhaps unsuitable for individual patients. To attempt to do so could initiate long debates on relative treatment advantages in general and as applicable specifically in individual cases of patients. For these reasons, a patient is just likely to be told about and offered what his local hospital provides. This might just be basic surgery and not state of the art RT. (I have made this point on the forum several times when patients seek advice on what treatment to have - something we cannot advise on although we can say there are alternatives if men are suitable candidates and are prepared to go out of their way to find them). Where alternative treatment elsewhere will not be funded and is not covered by an insurance scheme, the choice is likely to be restricted to a form of surgery or radiation if the patient is not able or willing or is unable to self fund and also possibly unwilling to travel, maybe even go abroad. One last consideration is that if so much information is given some patients find it difficult to absorb everything and making a decision becomes even more difficult, particularly as possible and likely side effects also have to be considered.

Edited by member 15 Jan 2017 at 15:22  | Reason: Not specified

The procedure went well. Recovery proceeding ( he is back working full time) too early for PSA tests or new scan ATM re success or otherwise regards the PCa

Regards

Clare