Deciding between AS or RP

User

Posted 24 Jan 2018 at 10:39

Hello all and thanks for sustaining this excellent community. I've put details in my profile, but I was diagnosed a week ago at age 59 with localised PCa, PSA 6.0, GS 7=3+4 with low volume 4, and put into Gleason Grade II (low intermediate risk). It was a template biopsy with cancer found in a single core out of 40, and that was low volume. My brilliant consultant outlined the options (effectively I have pretty much all options which makes choice harder!), but suggested I read all the info on this site regarding AS, RP, RT, HIFU etc and then discuss more in a couple of weeks.

Being a curious type and having scientific background I've also been reading a lot of the academic papers relevant to my diagnosis and choices. I feel as if I could sit an exam in Urology!

I've narrowed the choice down to AS or robotic RP. What sways me towards AS is that it would be automatic choice for GS6, and I've seen studies showing evidence that the small group of GS7 "favourable" I fall into should be regarded as essentially GS6 (both groups show very similar prostate pathology when they have RP). RP for GS6 is certainly over-treatment, given that many medical pros believe it shouldn't be labelled a cancer at all given the indolent way it behaves and its formal characteristics, and most importantly its non-metastasizing nature. Psychologically I would be fine under AS — I had much more serious cancer treatment thirty years ago so have been very used to living with cancer, and the diagnosis didn't stir any panic or shock or "get it out fast" attitude which might be more likely insomeone fortunate enough not to have prior experience of cancer.

But other points argue for RP now. There's the rise in my PSA from 4.7 to 6.0 in 3 months which had I already been under AS would have rung alarm bells (some protocols call for AS patients to be re-biopsied for a +1 increase in 12 months) and the deterioration in PIRADS from 3 to 4. The template biopsy is pretty accurate but not infallible, so I could be hiding higher grade disease. Another factor is that my consultant is regarded as one of the very best RALP surgeons, and he's been doing them since 2007.

I know it's a very personal decision given the ED and incontinence etc factors (I have two wonderful sons so no ambitions to sire a second family!), but would still love to hear any thoughts from people here to help me decide.

Thanks a lot!

Adrian

User

Posted 24 Jan 2018 at 20:38

Hello Adrian, I have much the same decision, I am Gleason 6 3+3 and as you say, not considered a "proper" cancer by some experts. I have opted for AS for now, if my PSA rises above some figure that I am not sure of, 10? 15? A question for my next Urology visit in March, anyway, if it does rise then I will probably go for Brachytherapy. I like the thought of "getting it all out" but not the well known problems that can occur afterwards.

Like you, I have studied hard and, for a humble engineer, I reckon I have a reasonable understanding of this complex subject.

No doubt you found the research that indicates that 10 and 15 year survival rates are better for RP, although even this is not certain, treatments have changed and improved since the research was done.

The oft repeated "It's a personal decision" and " We are all different" are very true. I suppose we must make our choice and hope we got it reasonably right.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 24 Jan 2018 at 14:30

Firstly how pleasing to know that a consultant is advising his patients to use the guidance on the PCUK website! That was how I originally came to be a member but I think it is quite rare and some unfortunates find that their medics are rather anti any kind of online information :-(

None of us can help you to decide which to go for - what I would say is try to keep in mind that AS is not a permanent choice - you can opt for AS now and change tack at any point if your scores start to rise or you begin to wobble. You are correct that template biopsy is not infallible but it is very close to - to have low volume in only one core seems like a very reliable baseline to me. Also, was there a DRE between the 4.7 test and the 6.0 one? Was the DRE done very soon before the second lot of blood was taken?

If you do decide to go for radical treatment rather than AS, don't discount brachytherapy without seeing an oncologist - for your stats it may be a much better option than RP.

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

User

Posted 24 Jan 2018 at 16:29

Hi Adrian,

Welcome to this forum, though sorry for the diagnosis that brings you here.

Please be aware that your Profile/Bio and posts can easily be obtained by scammers joining the forum and t and many people here omit their surname. You may wish to consider therefore whether you wish to remove your surname if it is indeed yours and this is of concern to you.

You seem to have done your homework to help you come to a decision but it could still be useful obtaining further reliable information by obtaining the 'Toolkit' available from the publications section of this charity.

PCa is a complicated disease where men respond differently to a treatment even when they have a seemingly similar diagnosis. In fact there are different types of PCa, possibly as many as 27 or more. Most often surgeons favour surgery and oncologists, radiation treatment of one sort or another and then for suitable men there is the option of AS as you are aware. If you do take this route suggest you resort to radical treatment whilst the opportunity of best chance of cure is still available to you should circumstances suggest.

Barry

User

Posted 24 Jan 2018 at 17:02

Hi,

I agree with Lyn don't discount Brachytherapy, I am 16 months after my Brachytherapy and very happy with the results.

I was offered Radical robotic removal or Brachytherapy with PSA 2.19 Gleason 3+4=7 and 5 out of 20 Positive,Psa test this week 0.44.

Good luck. John.

User

Posted 24 Jan 2018 at 19:30

Hiya Adrian,

You certainly have thoroughly researched our shared malady. We are about the same age with similar diagnosis. On diagnosis I almost immediately opted for Active Surveillance, whereas my partner just as quickly favoured Da Vinci prostatectomy. We went away and thought about it for a week whereupon I changed my mind. That was just over two and a half years ago. Now, whilst my partner has been absolutely supportive and honest without question, there exists a sense of real loss. I really don't want to impact on your wonderful attitude and positivity, but I just thought my experience could be relevant as I occasionally, albeit fleeting, wonder if maybe I should have had a period of AS. As LynEyre says AS is not a permanent choice. Take care Adrian and remain as upbeat as you can.

Paul

User

Posted 24 Jan 2018 at 21:41

Thanks John and no I hadn’t seen that data point on survival rates - the studies I had seen were most striking for how similar the - always high - survival rates were for AS, RP and RT. It may sound callous but it seems quite hard to actually die from early diagnosed PCa, though it’s a big killer at advanced metastatic stage. Hence most of my thinking so far has been around issues of side effects and recovery. I hope the fates aren’t reading this!

All the best

Adrian

User

Posted 25 Jan 2018 at 08:39

Good morning Adrian,

Good question regarding this sense of loss I sometimes feel. It certainly is the absence of what you might call a full and active sex life, but alongside that I've felt older and more vulnerable. I am fully aware that as we age we experience a gradual decline of our former powers, and I'm usually the type of person who can naturally see the humorous side of this. But, the RP,at least for me, has been an abrupt change. Of course our whole life circumstances also impact greatly. Nevertheless in my initial contact with you I did use the words 'occasionally' and 'fleetingly' so probably the problem is lessening with the passage of time. All the very best Adrian, I'm sure you will reach the best decision for you.

Paul

Edited by member 25 Jan 2018 at 17:14 | Reason: Not specified

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User

Posted 24 Jan 2018 at 14:30

If you do decide to go for radical treatment rather than AS, don't discount brachytherapy without seeing an oncologist - for your stats it may be a much better option than RP.

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

User

Posted 24 Jan 2018 at 16:29

Hi Adrian,

Welcome to this forum, though sorry for the diagnosis that brings you here.

Barry

User

Posted 24 Jan 2018 at 17:02

Hi,

I agree with Lyn don't discount Brachytherapy, I am 16 months after my Brachytherapy and very happy with the results.

I was offered Radical robotic removal or Brachytherapy with PSA 2.19 Gleason 3+4=7 and 5 out of 20 Positive,Psa test this week 0.44.

Good luck. John.

User

Posted 24 Jan 2018 at 19:22

Thanks to all who have replied so far, and regarding non-clinical matters thanks for heads-up on surname in profile which I’ve radically removed!

Yes I had a DRE just after last blood test and MRI - it was completely normal insofar as the consultant could tell (but I understand they can’t feel the whole prostate).

Thanks also for suggestion of Brachytherapy which I’m investigating and considering more seriously now as an option. On first read the other day I was a little alarmed by idea of ejaculating a radioactive seed! Seriously I’m reconsidering. The consultant open enough to point me here, also stressed that he would arrange for me to see a radiologist before I made any treatment decision.

AS does seem a sensible and flexible option, but there’s that risk of any sneaky cancer escaping through the prostate while the guards aren’t looking so to speak, and the undeniable fact of sooner the better if my disease is to worsen. But AS is rapidly become the standard choice for low risk and low-intermediate. In the US it moved from being recommended to 9% of such patients to 40% and rising 2009-13, so there are genuinely a lot of changes and constantly new info surrounding prostate cancer. Lots to think about...

User

Posted 24 Jan 2018 at 19:30

Hiya Adrian,

Paul

User

Posted 24 Jan 2018 at 20:38

Like you, I have studied hard and, for a humble engineer, I reckon I have a reasonable understanding of this complex subject.

The oft repeated "It's a personal decision" and " We are all different" are very true. I suppose we must make our choice and hope we got it reasonably right.

John

Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1 Jan. 21 < 0.1 Dec 21 <0.01 June '22 <0.01 April '23 <0.01

User

Posted 24 Jan 2018 at 21:28

Hi Paul

I’m sanguine about it but not positive - feel quite p***ed off to be honest! Saw off three episodes of cancer 25-30 years ago and the damn thing’s coming at me again. Still have had 25 years with literally zero effect of those past brushes, so have been fortunate really.

May I ask whether the sense of loss you occasionally feel is related to sex, or some other side-effect of treatment? Or put another way, what would you have valued in period of AS (and I guess that might have been years but possibly just months)?

All the best

Adrian

User

Posted 24 Jan 2018 at 21:35

Large scale research published in 2017 showed that for equal diagnoses at T1 or T2a the 10 year outcomes were almost identical for men on AS as for those that chose radical treatments. Large scale EU research over recent years has shown that for equal diagnoses, RT has exactly the same success rate as RP - and although they don't have full data yet because brachy hasn't been around for as long, it seems that brachy is as successful as RT & RP but with fewer side effects.

Just as a point of note, you misunderstood my reason for asking about DRE I think. Some doctors are not aware that the DRE must be done after the bloods not before, as prodding and poking the prostate temporarily raises the PSA - I wondered whether that might explain the rise to 6. But obviously not applicable if your DRE was done afterwards.

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

User

Posted 24 Jan 2018 at 21:41

All the best

Adrian

User

Posted 25 Jan 2018 at 08:39

Good morning Adrian,

Paul

Edited by member 25 Jan 2018 at 17:14 | Reason: Not specified

User

Posted 25 Jan 2018 at 10:17

Thanks Paul I didn't wish to be intrusive but It all helps me make a decision so really appreciate your frankness. We all live with gradual decline in all sorts of areas, but I hadn't thought about PCa being a step change in some of the more obvious symbols of that decline till your thoughtful reply. If these feelings are lessening with time then that's good too.

Adrian

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