Radical Treatment or Active Surveillance?

You should take the advice of the medical professionals. Have you been offered the chance to discuss RT with an oncologist?

You will read many posts agonising over the same question. Usually its laid out what the treatment options are then you choose. However sometimes the medical professionals will nudge you a little in the direction of the treatment which they consider has the highest chance of success.

Edited by member 13 Sep 2023 at 22:18  | Reason: Not specified

Hi Dylan

Im in a similar position. I was diagnosed last week. PSA 5.9, 11 cores positive for 18, 6 on right side and 5 on left. Originally diagnosed as 3+4 by Hinchingbrooke, but now being told it’s 3+3 by Addenbrookes. Was steered towards RP by my consultant based on the volume found (hence Addenbrookes becoming involved) but have now been told AS is an option if downgraded diagnosis is correct.

Bit of a change in thought process now I have to make that decision, but think I’m still going for RP as I am relatively young at 59, and just want rid of it to be honest. I’m young enough to hopefully recover well from the op, and frankly would rather gamble with the side effects than with the cancer spreading without being caught. 

I also looked at the stats, and for me it said 72% for 15 years with conservative treatment Vs 79% with radical treatment. That’s a big enough difference for me.

I’m a natural worrier, my dad had this disease, my mum has terminal cancer and my younger brother has oesophageal cancer, so I don’t think AS is the route I want to risk.

Good luck with whatever you decide though mate, and keep us updated 👍

Well I was  53 at diagnosis, and all my scores were a bit worse than yours, but you are roughly in the same position I was. Prostate predict gave me about a 40% chance of living to 68 but a bit over 55% with treatment. In my case the recommendation was very strong for HDR, HT and EBRT. So I didn't really have to make a decision. 

As any treatment offered will have about a 70% chance of working, you are wise to be looking at minimising side effects and maintaining quality of life, rather than looking for the most aggressive treatment you can find.

The prostate predict tool only shows figures at up to 15 years. If you are diagnosed with PCa in your late 60s that is good enough, but 55 plus 15 = 70 and I'm sure you were hoping to live well beyond that. In prostate predict you can view the results as curves. Though the curves only extend to 15 years you can look at the shape of them and extrapolate to 25 or 30 years ahead. If you want to live life in to your 80s I think you will need treatment at some point.

As long as things are not progressing fast then Active surveillance is a great way of avoiding side effects, and if you ride a motorcycle, sky dive or scuba dive you may die long before you get around to thinking of treatment. Once AS is showing progression, you have shortened your odds of a cure by a tiny percent, but had many years of sex which is good compensation. I would then consider RT probably with HT as the next least aggressive treatment with a reasonable chance of success.

What I am saying is only food for thought. Your medics have said RP now is your best option. Their opinion and your opinion are much more use to you than my opinions.

As far as my own disease is concerned treatment seems to have worked. My view is that the cancer could return anytime, but effectively the clock has been reset, and if/when it returns I will have 15 years from that date until death. So now I think it unlikely cancer will get me before I'm 74 which is better than 68, and next year I will extend that 74 to 75.

It's not a nice place to be in, having to make decisions that will affect the rest of your life but unfortunately you do have to make those decisions bearing in mind that this cancer is not going to get any better - it is going to get worse. AS is sometimes offered but is just prolonging the inevitable.

RP ensures that you remove the mothership but you may suffer incontinence and ED - both might be short term or permanent - until they remove it you won't really know. eg my incontinence has almost completely stopped 4 months after RP but my ED is permanent - so we have found other ways to enjoy bedroom time!

If RP isn't offered due to the cancer spread, then RT will be available with or without HT - again incontinence and ED/libido loss may be the side effects - until you are on it you won't really know how your body will react.

Then there is the issue of the diagnosis at this stage being their best guess - you will have had the MRI and biopsy that gives them the best info they can get but only when the prostate is on the lab table being sliced can they be definitive - something else to consider.

It's a horrible place to be in but listen to the urologist and oncologist - they deal with these cases every day and can give you the best advice - but push for a cure, don't put off the inevitable.

Different for everyone but I decided on RP 3 1/2 years ago after a period of AS. Can't say I really have any side effects so was glad I chose the route I did. Good luck

Hi Dylan

I had robotic RP 12 years ago. The surgery was a little complex and recovery was difficult because the catheter had to remain in place for 5 weeks. Initially I suffered from total incontinence but 5/6 weeks after surgery I was 99% continent (I leak sometimes when standing up from a squatting position and when sexually excited so I wear a pad for safety) and in spite of nerve saving prostatectomy I suffer from ED which is not helped by the fact that I was 72 at the time; my erections were waning anyway. I am very lucky that my PSA has remained stable at <0.003 for the past 12 years. In spite of my problem with minor climacturia  and ED I am pleased that I chose that option at the time. As we were sexually active before the surgery we had to adapt to my new situation and have managed to re-establish our sex life and now we are leading a happy intimate life. To get some idea of how men like me deal with ED and incontinence and re-establish theirs lives have a look at this link:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

There has been an amazing development in other less invasive treatments in recent years. Would I still choose RP now? Honestly I can't answer that with any confidence. All I can say is that if your cancer is well contained within the gland with good negative margins and you can find a consultant with a lot of experience it is something you may wish to consider after having had a number of opinions from oncologists as well as urologist. It is a tough call and I wish you luck. 

Sorry you're here, especially with the family history.

I know you value QoL over longevity but I hope that doesn't mean you're writing off treatment just yet!

You are, on the face of it, early stage and eminently treatable and curable.

AS may just delay the inevitable. Given your age, you will almost certainly eventually need treatment and if that's the case, why not tackle the problem when it's the easiest it will ever be to tackle?

Yes, treatment carries risk to QoL but that QoL could well be worse in the future if your PCa becomes more advanced.

I'm not a medic but I would agree that focal treatment isn't always a great option for multifocal disease.

RP is obviously a great option with a very high chance of a successful cure. It sounds however that maybe your family experience has highlighted potential issues with side effects from RP that you're not willing to risk?

If so, you may also consider Brachytherapy as a radiotherapeutic treatment and I'm not sure why this would be advised as unsuitable for someone in your position except that Consultant urological surgeons (which I'm guessing is who you've seen), will generally tell you surgery is the best (possibly only) real option because that's what they do, that's their speciality and that's what they're paid to do.

That's completely fine but given your concerns, I'm sure you would find it useful to at least talk to a oncologist who specialises in Brachy because providing there's no pre existing urinary function problems or oversized prostate to preclude treatment, Brachy can be just as successful as RP but with potentially far fewer side effects.

I've recently had Brachy and you can read my story in my profile but my Dad also had PCa detected close to the apex like yourself and because of the associated risk, he chose to be treated with a very short dose of HT followed by 'brachy boost' (IMRT and then LDR brachy). Nearly 18 years later and he's fit as a fiddle with no side effects and a psa less than 0.1 .

Whatever you decide, I wish you the very best of luck!

So I believe you need to assemble as much information about your case as possible, look at options that are open to you and relate these to your age, priorities over potential side effects and lifestyle. For many, probably most, it is a daunting decision but at least you know you have played the hand that you have been dealt the best way you judged at the time.

PCa does not get better, it can only get worse and the worse it is, the higher the risks of whatever treatment is chosen not being so successful.

I do understand the arguments between HT/RT and RP - there is some logic to that discussion and neither is clearly more successful than the other but AS to me, seems to be just putting off the inevitable with no positives.

I guess I might be biased in that my biopsy result was severely downgraded after RP and so I'm pretty sure that they can not be 100% sure of the actual diagnosis until it's out on a lab table but I really am unsure of why AS would be a chosen option - so what am I missing?

Thanks

Thanks, yes I can kind of see the logic there although I would caution you about expecting the incontinence to be as bad as you seem to fear especially given your age.
I am 62 and now 4 months post RARP and the incontinence has all but gone. I am using #1 pads which are very discrete and most days they are completely clean at the end of the day. A sneeze might catch me out but all that does is release a dribble - probably less than a teaspoon.
Even just after surgery, I was never filling a pad (#3) and never ever had one leak. I believe the Tena Men that I use have some sort of gel and it can be no worse or different for the women that you employ during their periods or the older ladies who likely have similar leakage.

So, apart from being signed off work for 6 weeks (although I could have gone back to a desk job after 3 if needed) then I personally would not worry about that as a reason to delay the treatment - especially if December brings a PSA > 6. 

Good luck!