Hi everyone

Good. load up your profile it helps we all take notice and read. I am new to this (5 months) and have take a lot of interest in peoples back stories and history/progress. lots of experts in this forum and the membership is growing so fast now. 

Fresh

Personally I would want it out and maybe opt for open surgery to minimse any ED.

If you are offered AS you should also consider making some significant diet / lifestyle changes to see if you can improve your staging.

In some strange way, I think we are approaching a crossroads on PCa treatment. As someone who has had HT plus RT and am waiting for the all clear, personally, I think RP will become a less attractive option, with its inherent risks. All surgery carries risks and it’s my personal opinion we should mitigate that risk wherever possible.

I had my 20 fractions of RT on a brand new IMRT machine with ultrasound support. I know some NHS Trusts don’t offer the ultrasound support. I am through the first week post treatment, with no urinary issues and no rectal toxicity problems.

The staff were very skilled and professional plus I stuck to the enema and drinking drills to the letter and kept fit and exercised ever since I started HT.

Every treatment my live ultrasound was overlaid on my planning CT scan and my tattoos  lined up by lasers. After going through all the warnings of numerous side effects etc, I can’t believe how well I feel

Alan

Oh, and Lyn, I've had my family and had a vasectomy about 10 years ago, so that's not a concern thankfully. I'm very much aware that this could all be so much worse. The bad news is I've found out I have PCa, the good news is I've found out I have PCa (so hopefully can do something about it) :)

All paths lead the same way. They seek to destroy the prostate cancer, collateral damage limitation is subjective and case by case on all treatment paths. Your diagnosis is similar to mine. The problem we face is that each of us has made a decision and are invariable wedded to that course of action and often advocate it (maybe without objectivity always).

My rational was that my primary objective is to get rid of the cancer. The best route for oncological control that (subject to staging) gives you two bites of the cherry is RALP (Conventional, open or Reitz) followed by HT+RT if needed. There is less chance of going HT+RT and then Surgery, why, because no matter how much you dress up RT it mashes up the prostate and welds it to surrounding structures, making surgery as a backup highly risky. 

The effectiveness of RT post RALP was initially a question I put to surgeons and oncos both felt that it was acceptable in the face of the most effective treatment line.

Guess what, when Both procedures RALP and RT work as one off procedures they both get similar outcomes. When nerve sparing is 100% then ED becomes Unlikely. 

AS is something I would only do if you plan to go to RT because every day on AS becomes a day with reducing surgical margins. If you get an mpMRI image get it copied onto disk. Look at the imaging report and if there is capsular contact then the position of that contact is key. NEROSAFE May becomes a potential option.

My surgery was a breeze But there is hardly a day that goes by when I don’t try and second guess my choices. As if this was not hard enough 😂 

Fresh

Edited by member 11 Sep 2018 at 13:38  | Reason: Not specified

50% of the cores on LHS is rather high - I suspect that will rule out AS as anything other than a short term holding position.

HIFU has good results as a salvage treatment but the outcomes as a radical (primary) treatment for HIFU have been very disappointing so far. If you have money, you could talk to Claret about travelling to the US for focal laser ablation?

I disagree with Fresh's statement above - that with 100% nerve sparing, permanent ED is unlikely. Even with complete nerve sparing there is still a high chance of erectile problems. NHS stats are that 90% of men can get an erection at 12 months either naturally or using mechanical/ chemical assistance after nerve-sparing but worth noting that this is about getting some kind of erection - the stats for achieving an erection sufficiently solid for penetrative sex are lower at around 80%. Plus, anecdotal evidence here suggests that it is worse than that and the surgeons may be over-reporting:-/

Edited by member 11 Sep 2018 at 14:59  | Reason: Not specified

Hi Stephen,

My husband like you had surgery at the bottom of his list and it felt like an over treatment of a low risk ( though high volume ) diagnosis.

We would have chosen AS but as we could afford an out of pocket solution we travelled to the USA for a focal laser ablation (FLA). This is also available in Holland.

He is on 4 monthly surveillance in the UK ( down from 3 monthly) and still has his prostate with latest PSA of 1.44

only side effect was a dry orgasm ( happens in 30% of cases after FLA)

we uploaded scan here and had 2 phone consults before booking. In addition we asked our UK consultant for an opinion and her opinion was ‘if you can afford it, do it’

i am sure RP will not be around in the future.. your TURP point is interesting .. I hadn’t thought of that but seems a very good question.

FLA does not stop a radical treatment being taken up in the future if things change but for now lack of side effects means we have zero regrets. 

Good luck

Claret

And the ‘unattraction‘ of surgery is the distinct possibility of incontintence (not me - thank you Professor X), impotence (me - no thank you Professor X, not your fault), and the loss of penis length (down to either the Prof or his sidekick Da Vinci) which seems to largely go unmentioned and unmentionable here!

If, as in my case the post-operative biopsy showed spread to my lymph nodes, not shown on my MRI, although I have been told I am cured, I may end up having HT and RT anyway at some point in the future.

These are some of choices for you, and everyone here is trying to help you make the right decision.

Cheers, John

In a recent interview the leading advocate of focal therapy in the UK discussed various treatments of which long term assessments can only be made but interestingly he said the way forward in the future may be by injection into the tumour

There are quite a lot of conversations on here about loss of length / girth and the causes and I have posted on it numerous times. Our uro told us that he has had a patient who lost so much they could no longer urinate standing up. 

General rule is that with surgery, you will lose approximately the same length as the length of the prostate that has been removed. Some surgeons claim that this is a fallacy and the bladder simply sits lower in the pelvic cavity once the prostate has gone, but that isn’t the story we see on here.

Loss of testosterone can put the genitals into a pre-pubescent-like state, hence the disappearing balls.

Penile atrophy, whether that is through surgery-induced ED, RT induced ED of HT induced loss of libido, will cause loss of length and girth when erect. Lose it or lose it is a real thing - it is a scandal that not all men on HT are given advice and referral to an ED clinic when they first start treatment.

Edited by member 13 Sep 2018 at 02:06  | Reason: Not specified

So, some good news. Bone scan was all clear 🙂

Saw the urologist today, same one that did my DRE during my initial referral. Seems like an eminently sensible and pragmatic chap. He went through the various options including AS, surgery and Brachytherapy. He was pretty clear that a focal approach wasn’t an option, but not overly clear why not.

Said with AS I could potentially ‘get away with it’ for years, but given there was some GS4 cancer his concern was that it at least has the potential to spread - at which point it’s either too late for a curative outcome or likelihood of NS is decreased and positive margins decreased. In addition there’s the psychological overhead of dealing with the anxiety.

Discussed nerve sparing and his view was it would likely be unilateral. I asked about neurosafe, but they don’t do it - subtext was that it adds additional time and cost so hasn’t really taken off across much of the NHS.

Discussed RT - stated that this is generally kinder to erections although my age was a concern due to length of time available to develop a recurrence, secondary cancers or other complications. But has referred me to an oncologist to explore further (also did a flow test so they have some data for that). Did state that salvage RP could be attempted post RT if needed.

Said I can get copies of my notes etc. Told me that the MRI wasn’t really good enough to get a clear steer on the location of the cancer - other than the LHS was suspicious - so biopsy wasn’t that targeted after all.

Cautioned that some other surgeons, whilst good, are also perhaps better at self promotion, so advised being wary of those that promise the earth - they don’t always deliver.

I’m edging toward a surgical option. Good curative chance, RT available as a backup plan and will have to cross fingers re continence and ED - although I think neurosafe is a potentially beneficial option to maximise chances of negative margins whilst maintaining function. My prostrate is relatively small at 20ml - so hopefully that reduces risk/extent of shrinkage ...

Ok - that’s enough for me for now. Keeping an open mind until I’ve seen the onco and been for a 2nd opinion with a certain Guildford based professor who has been mentioned on here several times.

Have a good weekend everyone!

Edited by member 14 Sep 2018 at 19:51  | Reason: Not specified