I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

12>

Radical Treatment or Active Surveillance?

User
Posted 13 Sep 2023 at 22:56

Hello. Today I was told I have prostate cancer, widespread but confined to the prostate. I'm an otherwise fit and healthy 55-year-old. My PSA level was 4.4 but I have a family history - brother had RP aged 47. Father and grandfather also had prostate cancer, but it did not kill them.

Biopsy results: 3+4 with 10% 4

 

Left posterior extreme apex: 3+4; 10% 4; 4mm

Left peripheral zone apex-base 3+4 10% 4; 2mm

Right peripheral zone apex to base 3+4; 10% 4; 4mm

(9 of 21 cores positive)

 

I've been told by a consultant at UCLH that RP is the recommended treatment. I had pinned my hopes on focal therapy but was told owing to cancer being in both the left and right of the gland, and towards the apex, this would not be an option. I was told radiotherapy might not be ideal, for the same reasons.

 

We discussed estimated prognosis using Cambridge University's Predict Prostate tool, which generated the following estimates:

 

81 out of 100 men are alive at 15 years with initial conservative treatment.

86 out of 100 men treated (an extra 5) are alive because of radical treatment.

Of the men who would not survive, 8 would die due to causes not related to prostate cancer.

 

Given that I value quality of life over longevity, I'm wondering why I would accept greater risk of incontinence and sexual disfunction when the survival rates aren't that different? (I accept there are limitations with the tool.)

 

I'm wondering what others have decided in this situation, and if perhaps the tide is shifting away from radical treatment towards active surveillance?

 

Naturally I value quality of life, but equally I wonder if i'll regret not having had surgery when the disease spreads to my bones.

 

These are existential questions and I understand there's no right or wrong - I can only do what I believe is right for me. But I'm leaning towards watching and waiting.

 

All thoughts and insights welcome.  Thanks for reading this.

 

Dylan

Edited by member 13 Sep 2023 at 23:18  | Reason: Not specified

User
Posted 14 Sep 2023 at 22:17
Hi Dylan,

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!

User
Posted 06 Oct 2023 at 16:11

There are a small number of people whose prostate cancer doesn't get worse, or only so slowly it's not going to cause an issue, and consequently a small percentage are still on AS after 10 or more years. Also some men on AS die from something unrelated, so they benefited from avoiding what would have been a pointless prostate treatment.

However, AS clear comes with risk too, and there are a small percentage of men who end up metastatic either while on AS or after switching to active treatment which failed to cure. There are also men who were offered AS but went for prostatectomy instead, and their Gleason/Staging is upgraded from the histology to a level where AS wasn't ever appropriate. Indeed, 40% of patients who have a prostatectomy have their Gleason/Staging uprated by histology, so our ability to accurately diagnose Gleason/Staging in the first place isn't fantastic.

A long time on AS does seem to result on gradual reduction of erectile function and at 10 years it's pretty similar to those who had prostatectomy or radiotherapy. This may be caused by the multiple biopsies during that period.

The key things are how good the scans and biopsy were at accurately assessing your diagnosis, and how good the surveillance is while you're on AS (PSA tests, mpMRI scans, biopsies all being offered when they should be).

If eligible for AS, you can start with it while you take longer to decide what you really want to do, and also re-evaluate if the surveillance provided isn't top notch.

Edited by member 06 Oct 2023 at 16:17  | Reason: Not specified

User
Posted 13 Sep 2023 at 23:16

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 23:18  | Reason: Not specified

User
Posted 13 Sep 2023 at 23:52

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 👍

User
Posted 14 Sep 2023 at 02:41

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.

 

Dave

User
Posted 14 Sep 2023 at 09:58
Hi Dylan

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.

User
Posted 14 Sep 2023 at 13:15

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

User
Posted 14 Sep 2023 at 16:13

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. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 05 Oct 2023 at 20:35
It's interesting to learn of other's experience but you can't know yours will be the same even with almost identical prognosis. You don't know where on the scale of outcomes you might be for a particular treatment or AS. You can study all the pros and cons and potential and variable side effects and of course the views of Consultants who are in the best position to make clinical assessments but ultimately it can come down to the way you assess risk and how much importance you place on QOL. There are no guarantees with treating this disease and although Consultants clinical opinions are generally nearest correct, even they can be wrong sometimes. One man may well choose a different option to another based on his reasoning and what he hopes to avoid and how bady. This may also take into account what options might be available as back up if the original treatment does not work as it doesn't in a significant number of cases whatever you plump for.

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.

Barry
User
Posted 06 Oct 2023 at 15:34
I am always a little surprised when people decide to go down the AS route and maybe someone can explain the reasoning.

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

User
Posted 09 Oct 2023 at 11:27

Yes. I was on AS from around April 2021 (when I was diagnosed) until September 2021 when my PSA was recorded at 6.01. I had various scans during that time and there was no indication that the cancer was bulging out of the prostate. My initial biopsy indicated that the cancer was only in a small area of my prostate, hence me agreeing to go on AS, but a further biopsy some 6 months later suggested that it was throughout my prostate. It is very unlikely, not least because of my relatively low PSA score, that the cancer had grown considerably during those 6 months so must have been present when the initial biopsy had taken place. The scan directing the original biopsy needles obviously did not pick up the extent of the cancer. And from memory, the scan before the subsequent biopsy did not either.

A  low grade single prostate cancer cell takes around 450 days to form so a lesion of 1.5 cm as mine was would suggest my prostate cancer may have started around 30 years earlier. Evidence from Japan and the US, where the person has died from something other than prostate cancer, suggests that a number of men aged around 30  are already showing signs of prostate cancer so the need to test from at least age 50  seems a very good idea.

 

Ivan 

Edited by member 09 Oct 2023 at 13:56  | Reason: Not specified

User
Posted 09 Oct 2023 at 14:44

Originally Posted by: Online Community Member

One of the main drivers for me agreeing to go on AS was the fact that currently, having an extended period off work, or worst case having to retire early (leakage when you run a food factory is not ideal) would be a pain. If I can live with being monitored for a couple more years, then that would make the decision easier at that point.

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!

Show Most Thanked Posts
User
Posted 13 Sep 2023 at 23:16

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 23:18  | Reason: Not specified

User
Posted 13 Sep 2023 at 23:23

Thank you for asking that question. Yes, I will speak with the surgeon and the RT team, though it was suggested that the widespread nature of the cancer, and the involvement of HT treatment, mean that RT would not be their first choice for me. I'm hoping for more clarity when the meetings happen. It was clear that the consultant thinks RP is the right choice for me. But I'm not yet convinced.

Edited by member 13 Sep 2023 at 23:28  | Reason: Not specified

User
Posted 13 Sep 2023 at 23:52

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 👍

User
Posted 14 Sep 2023 at 00:32

Thank you Harty. Sounds like you know what direction is right for you. I was originally rated PIRADS 3 (equivocal for cancer) in Eastbourne but when UCLH looked at the same MPMRI images they upgraded me to Likert 4. And the biopsies proved them right. As if the process isn’t stressful enough without different measures and interpretations! Best of luck and let me know how you get on.

Dylan

Edited by member 14 Sep 2023 at 00:33  | Reason: Not specified

User
Posted 14 Sep 2023 at 02:41

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.

 

Dave

User
Posted 14 Sep 2023 at 09:17

Thanks Dave. If can cope mentally with the idea of active surveillance then I agree that’s my better option - for now at least. And I need to understand RT options more fully and why the consultant seemed to point me only in the direction of RP. Sounds like you’re doing well - best of luck and long may that continue! 

Edited by member 14 Sep 2023 at 09:19  | Reason: Not specified

User
Posted 14 Sep 2023 at 09:58
Hi Dylan

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.

User
Posted 14 Sep 2023 at 10:28

Thanks Steve. That’s helpful, sound advice. I shall meet the surgeon and the oncologist with an open mind, be open about my hopes and fears, take onboard their recommendations, and go from there.

User
Posted 14 Sep 2023 at 13:15

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

User
Posted 14 Sep 2023 at 13:55

Thanks Mike, encouraging to read about your experience and progress!

User
Posted 14 Sep 2023 at 16:13

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. 

 'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.'                    Richard Feynman (1918-1988) Nobel Prize laureate

 

 

User
Posted 14 Sep 2023 at 16:24

Thank you for your reply. Great to hear that you are finding your way through this. I will certainly take a look at the link.

Dylan

User
Posted 14 Sep 2023 at 22:17
Hi Dylan,

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!

User
Posted 16 Sep 2023 at 01:29

Hi Dylan,

I'm another in a similar position as you and Harty, with a recent diagnosis at age 58. For now, I have chosen AS.

In my case, the consultant was concerned about the risk of general anaesthetic due to quite advanced artery calcification in the heart. Hence, he was not leaning towards RP.

I was also keen to better understand PCa, options and others experiences before I make any major decisions. And of course, to see how my PSA readings measure over time. That may well push a decision sooner than later, just depends on the trajectory of the PCa.

Quality of life is paramount to me too. Having gone through a major operation 10 years ago for an Aortic aneurysm, I like to analyse the risk and consequences (not that I had any choice in that particular situation).

Family longevity doesn’t look great at all for me, if genetics and history is anything to go by it is pretty awful. But I am also wrestling with the same choice of should I, shouldn't I, in case it spreads and gets a hold in my body. If my longevity is not looking appealing because of other health problems, do I risk PCa surgery and a lower QoL for whatever the future might bring. No-one else can make these decisions, and I really don’t wish to impact my partner or families lives too significantly earlier than I can help. These are indeed very agonising questions.

One point I've picked up on this forum is just how much detail many of you have about your PCa, that seems to differ greatly from what I have. I wonder if you are better at taking notes and questions than I may have been, or has the consultant given you far more detailed written reports than what I have. Something I may need to address I suspect.

It’s clear some on here have had a very bad experience and equally many others very good (within reason of expectation) and got on with their life without too much impact. We often tend to focus on the bad experiences and that’s what I've been trying to weigh up. I've not yet come across a detailed report on each treatment option, the outcome in terms of percentages across all subjects and a general "scoring" for want of a better term. Maybe such a document doesn't exist.

But all said and done, this forum is a fantastic resource in itself both in technical and emotional content. Truly invaluable to all of us. However insignificant one’s experiences are through their PCa journey, informing the rest of us really does help.

User
Posted 05 Oct 2023 at 16:39

I'm another one just diagnosed (Gleason 3+4) and have been advised AS.

I'm 60 and healthy(?), just wondering if I should take up motorcycling, scuba and parachuting to increase my chances of not needing surgery....

My cancer was found by accident, MRI scan showed "something", the biopsy proved the "something" to be chronic inflamation, but cancer was found in a different area (3 out of 12 cores).

My dilemma is: choosing RP, (so also resolving the inflamation I've had for years), or RT, which would have been my prefered option, but could well leave my prostate in very poor condition having been weakened by the inflamation.

The options may be clearer when the time comes to move on from AS.

I also read about HIFU, which seems an interesting but less discussed option...

 

Edited by member 05 Oct 2023 at 16:42  | Reason: Not specified

User
Posted 05 Oct 2023 at 17:42

Hi Dylan,

I was diagnosed in 2016 at 70 with Psa 2,19 Gleason 3+4 with 5 out of twenty cores positive and was given a choice of Robotic removal or brachytherapy and the reason i took the Brachytherapy route was i felt is was less invasive with possibly fewer side affects and also a friend had the same two years earlier .

I have been very lucky so far with no real side affects apart from ED put that has improved over the years with the help of Viagra and nocturnal erections have returned over the last year. I was 7 years in September with PSA 0.10 and very happy with my journey so far.

If you click on my avatar you can see the journey.

Regards John.

 

User
Posted 05 Oct 2023 at 20:35
It's interesting to learn of other's experience but you can't know yours will be the same even with almost identical prognosis. You don't know where on the scale of outcomes you might be for a particular treatment or AS. You can study all the pros and cons and potential and variable side effects and of course the views of Consultants who are in the best position to make clinical assessments but ultimately it can come down to the way you assess risk and how much importance you place on QOL. There are no guarantees with treating this disease and although Consultants clinical opinions are generally nearest correct, even they can be wrong sometimes. One man may well choose a different option to another based on his reasoning and what he hopes to avoid and how bady. This may also take into account what options might be available as back up if the original treatment does not work as it doesn't in a significant number of cases whatever you plump for.

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.

Barry
User
Posted 06 Oct 2023 at 09:59

Hi Matt

Sorry you find yourself here. I am in a very similar position to you. 59 and fit & healthy (apart from this lark). Originally told 3+4, then told 3+3 by a different pathologist, so who knows. Probably borderline between the two. 11 cores positive from 18 (5 left and 6 right side). Have also accepted AS as the best option for now, due to not wanting to live with the side effects of the treatment options offered just yet.

It's clearly a bit of a gamble, but at our relatively young age, one that I think is worth pursuing for now.

Keep smiling mate!

User
Posted 06 Oct 2023 at 15:34
I am always a little surprised when people decide to go down the AS route and maybe someone can explain the reasoning.

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

 
Forum Jump  
12>
©2025 Prostate Cancer UK