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User
Posted 13 Jul 2023 at 14:58

Hi all, just been diagnosed and have Gleason of 4+3 and T3a. 

Options offered are prostatectomy or hormone + radiotherapy.

I have been reading pros and cons for each option and main concern is side effects.

I am fine with the surgery but worried about catheter and possible incontinence issues.

Time for HR and RT are long and issues there if feeling tired for duration.

Obviously down to me to choose, but how did anyone make that choice? Or was it that you knew straight away or took a while to make it. 

In my head I am flipping between each. Would be better if no choice and told this is only treatment option.

Apologies if this doesnt make much sense.

Thanks

Paul

User
Posted 13 Jul 2023 at 14:58

Hi all, just been diagnosed and have Gleason of 4+3 and T3a. 

Options offered are prostatectomy or hormone + radiotherapy.

I have been reading pros and cons for each option and main concern is side effects.

I am fine with the surgery but worried about catheter and possible incontinence issues.

Time for HR and RT are long and issues there if feeling tired for duration.

Obviously down to me to choose, but how did anyone make that choice? Or was it that you knew straight away or took a while to make it. 

In my head I am flipping between each. Would be better if no choice and told this is only treatment option.

Apologies if this doesnt make much sense.

Thanks

Paul

User
Posted 13 Jul 2023 at 19:06

Hi Paul,

Its a difficult one to make but at least you DO have a choice. If you have a Maggies Cancer Support Group near you, go along and speak to others in the Group with personal experience, I think that will help you make your decision. If it’s anything like the Fife Group 90% of the men will be PCa.

Not everyone gets tired with HT and RT…I don’t, but I keep very active. If you’ve done your research on here you will have seen the many side effects you MIGHT get going down that route.
Going for surgery, it seems(to me anyway) that many men expect a quick recovery but 3 months down the line they are disappointed to be still far from back to normal. Although it’s keyhole/robotic surgery it’s a MAJOR op, someone likened it to the severity of a hysterectomy for a woman. The one thing about HT and RT is that many men are able to keep going during treatment even though they may not be functioning at 100%.

All the best with your decision!

Derek

User
Posted 13 Jul 2023 at 20:47

Hi Cambo 1961,

Sorry that you find yourself here...

I'm now aged 67 and was diagnosed just over a year ago (Gleason 3+4 before post-surgery histology report, which raised it to 4+3).

I was offered Radical Prostatectomy (RP) or Radiotherapy + Hormone Therapy (RT/HT).

I chose RP, mainly because they didn't offer RT without the HT.  I didn't want HT because I was concerned about the possible effects on my libido and my emotions.  Sex was a big part of my life.

I was aware of a risk of incontinence and erectile dysfunction (ED) with RP, but my incontinence has been a lot worse than I anticipated.  I'm now a year post-op and am still using 2-3 pads per day.  However, it's important to say that some people are continent almost immediately after the catheter is removed (about a week after the surgery), so I guess I was just unlucky.  The catheter is a bit of bother, but it is soon be out.

As for the ED, that's still almost total, although I supposedly had nerve-sparing surgery.  I have been prescribed Cialis, Penile injections (Viridal) and a Vacuum Pump.  Luckily, I don't have a regular partner at present and live alone, so I can 'practice' with these tools whenever I want to.  Lately, I seem to experience some slight 'stirrings' but this may be wishful thinking.  The general rule seems to be that it gets better in Year 2.  I sincerely hope so!

Would I choose RP again?  Probably.  I'm glad that the post-surgery histology report gave me more information about my cancer than would have been availalble with RT/HT.  However, I don't think I would have had such a bad outcome with the incontinence issue with RT/HT.  

If you do choose RP, try to start doing lower pelvic floor ('Kegel') exercises beofre the surgery.  This will help with any incontinence issues afterwards.

Good luck with whatever you decide to do.

JedSee.

User
Posted 14 Jul 2023 at 09:23

Hi Paul

At least you do have a choice. I didn't. Because of age  78 at diagnosis, and staging T3b I was told that prostatectomy was not an option and the surgeon would decline to do it.

Looking at recovery times and side effects I was happy to go down the RT, HT route despite the fatigue, aches and pains, hot flushes and zero libido still with me after a year post HT. But apart from these I generally feel OK.

My psa is still 0.025 but testosterone only 0.9.

Chat with the specialist nurse yesterday said it will improve in time! Oh joy.

Can't make your decision for you. I would have preferred to have it out but that was not possible.

Good luck to us all.

 

Peternigel

User
Posted 14 Jul 2023 at 09:32
Mine was a simple choice - 3+4=7 at the biopsy but resulted in 4+5=9 T3a afterwards with histology. Unclear margins but post-op PSA at <0.01 so I am so glad I went that route.

I have the option of RT later on if it is needed but currently on 3 monthly PSA tests and no need to see the consultant for 6 months.

The op was OK - nothing too dramatic however it wasn't nerve sparing but I still get to enjoy a FWO (floppy willy orgasm) and the incontinence is improving to just a slight dribble when exerting myself.

Only issue has been a 8x5cm lymphocele causing some leg discomfort which may or may not need intervention.

Everyone is different and will react differently so it's no way a recommendation for you, just that for me RARP was, I feel, the right choice.

User
Posted 14 Jul 2023 at 11:28

Paul, I was diagnosed aged 63 with a Gleason of 4+4 which was upgraded to 4+5 following the histology. I was given no choice by my Oncologist/Urologist other than RARP. The operation was very straightforward and nerve-sparing. The catheter was uncomfortable but I have been fortunate that I regained full bladder control within three months of the catheter being removed. Yes, there are ED issues, but there are there signs of ‘recovery’ with the use of Sildenafil, and the vacuum pump is also helping with recovery. PSA is now where is needs to be.

All I can advise is to trust your specialist: they will give you a clear steer as to the best way forward.

User
Posted 14 Jul 2023 at 23:00

Hi Cambo

I was in a very similar position to you in 2011. (Gleason 4+3, 3+4, organ confined with clear margins). I chose prostatectomy for four main reasons. Removing the prostate - and the cancer with it  -  appealed to me but more importantly I had more confidence in my urologist (private treatment) than the oncologist. Robotic surgery was relatively new but my consultant had performed over eighty such procedure whereas the oncologist was trialing Cyberknife technique. I was/am very fit but due to the size of my prostate (age related) I was having urinary problem of frequency and difficulty urinating). Also RT/HT option as a backup seemed attractive. I had prostatectomy at the age of 71. Recovery was difficult (catheter in for 5 weeks). I am reasonably continent except when sexually excited (dribbling!) and also ED which is more due to my age than the surgery. At 84 and 79 we have an active 'new normal' sex life with the helps of VEDs and a vibrator. I am very very lucky that my PSA has remained steady at less than 0.003 since surgery. Treatments have moved on: robotic prostatectomies are normal now and very successful but so are HT/RT techniques. My advice is whatever you choose be confident because cure-rate for this cancer is better than when I had my surgery over 12 years ago. Obviously, don't want to influence you, if you choose surgery you can re-establish your intimate life, Have a look at this link: https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life 

Edited by member 15 Jul 2023 at 14:51  | Reason: Not specified

 '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 15 Jul 2023 at 06:20
Bear in mind that at T3, if you do opt for surgery, you have a high probability (roughly 50%) of subsequently requiring salvage RT, in which case you'll end up with the side-effects of both surgery and RT. Personally I'd just go for the RT in the first place!

Best wishes,

Chris

User
Posted 15 Jul 2023 at 12:53

Hi Paul,  Sorry to hear your diagnosis.  I was faced with the same decision with diagnosis in Jan 23.  Gleason Score 7 (4+3) CPG 3 Stage 1.   My decision was made a bit easier in that my Consultant suggested that because my Bladder was larger than normal, RT may cause damage to it. I also had the fears about incontinence etc etc.  I decided I would rather have it removed knowing that surgery would not be an option If I had RT first.  I had my RALP 8 March and was in hospital 3 nights due to low BP.   Catheter removed 2 weeks later.

Yes initially the incontinence was bad but by diligently doing the pelvic exercises things improved very quickly and the using pads gave me confidence to go out.  I have now been able to abandon the pads and to resume Bowling,  My follow up PSA at 3 months was < 0.01 which is considered undetectable.  my next test is in a couple of weeks.

You have to make your own decision, it is not easy but for me the relief of having the cancer removed in one procedure was the way to go.   

I wish you well.

Rob

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User
Posted 13 Jul 2023 at 19:06

Hi Paul,

Its a difficult one to make but at least you DO have a choice. If you have a Maggies Cancer Support Group near you, go along and speak to others in the Group with personal experience, I think that will help you make your decision. If it’s anything like the Fife Group 90% of the men will be PCa.

Not everyone gets tired with HT and RT…I don’t, but I keep very active. If you’ve done your research on here you will have seen the many side effects you MIGHT get going down that route.
Going for surgery, it seems(to me anyway) that many men expect a quick recovery but 3 months down the line they are disappointed to be still far from back to normal. Although it’s keyhole/robotic surgery it’s a MAJOR op, someone likened it to the severity of a hysterectomy for a woman. The one thing about HT and RT is that many men are able to keep going during treatment even though they may not be functioning at 100%.

All the best with your decision!

Derek

User
Posted 13 Jul 2023 at 20:47

Hi Cambo 1961,

Sorry that you find yourself here...

I'm now aged 67 and was diagnosed just over a year ago (Gleason 3+4 before post-surgery histology report, which raised it to 4+3).

I was offered Radical Prostatectomy (RP) or Radiotherapy + Hormone Therapy (RT/HT).

I chose RP, mainly because they didn't offer RT without the HT.  I didn't want HT because I was concerned about the possible effects on my libido and my emotions.  Sex was a big part of my life.

I was aware of a risk of incontinence and erectile dysfunction (ED) with RP, but my incontinence has been a lot worse than I anticipated.  I'm now a year post-op and am still using 2-3 pads per day.  However, it's important to say that some people are continent almost immediately after the catheter is removed (about a week after the surgery), so I guess I was just unlucky.  The catheter is a bit of bother, but it is soon be out.

As for the ED, that's still almost total, although I supposedly had nerve-sparing surgery.  I have been prescribed Cialis, Penile injections (Viridal) and a Vacuum Pump.  Luckily, I don't have a regular partner at present and live alone, so I can 'practice' with these tools whenever I want to.  Lately, I seem to experience some slight 'stirrings' but this may be wishful thinking.  The general rule seems to be that it gets better in Year 2.  I sincerely hope so!

Would I choose RP again?  Probably.  I'm glad that the post-surgery histology report gave me more information about my cancer than would have been availalble with RT/HT.  However, I don't think I would have had such a bad outcome with the incontinence issue with RT/HT.  

If you do choose RP, try to start doing lower pelvic floor ('Kegel') exercises beofre the surgery.  This will help with any incontinence issues afterwards.

Good luck with whatever you decide to do.

JedSee.

User
Posted 14 Jul 2023 at 09:23

Hi Paul

At least you do have a choice. I didn't. Because of age  78 at diagnosis, and staging T3b I was told that prostatectomy was not an option and the surgeon would decline to do it.

Looking at recovery times and side effects I was happy to go down the RT, HT route despite the fatigue, aches and pains, hot flushes and zero libido still with me after a year post HT. But apart from these I generally feel OK.

My psa is still 0.025 but testosterone only 0.9.

Chat with the specialist nurse yesterday said it will improve in time! Oh joy.

Can't make your decision for you. I would have preferred to have it out but that was not possible.

Good luck to us all.

 

Peternigel

User
Posted 14 Jul 2023 at 09:32
Mine was a simple choice - 3+4=7 at the biopsy but resulted in 4+5=9 T3a afterwards with histology. Unclear margins but post-op PSA at <0.01 so I am so glad I went that route.

I have the option of RT later on if it is needed but currently on 3 monthly PSA tests and no need to see the consultant for 6 months.

The op was OK - nothing too dramatic however it wasn't nerve sparing but I still get to enjoy a FWO (floppy willy orgasm) and the incontinence is improving to just a slight dribble when exerting myself.

Only issue has been a 8x5cm lymphocele causing some leg discomfort which may or may not need intervention.

Everyone is different and will react differently so it's no way a recommendation for you, just that for me RARP was, I feel, the right choice.

User
Posted 14 Jul 2023 at 11:28

Paul, I was diagnosed aged 63 with a Gleason of 4+4 which was upgraded to 4+5 following the histology. I was given no choice by my Oncologist/Urologist other than RARP. The operation was very straightforward and nerve-sparing. The catheter was uncomfortable but I have been fortunate that I regained full bladder control within three months of the catheter being removed. Yes, there are ED issues, but there are there signs of ‘recovery’ with the use of Sildenafil, and the vacuum pump is also helping with recovery. PSA is now where is needs to be.

All I can advise is to trust your specialist: they will give you a clear steer as to the best way forward.

User
Posted 14 Jul 2023 at 23:00

Hi Cambo

I was in a very similar position to you in 2011. (Gleason 4+3, 3+4, organ confined with clear margins). I chose prostatectomy for four main reasons. Removing the prostate - and the cancer with it  -  appealed to me but more importantly I had more confidence in my urologist (private treatment) than the oncologist. Robotic surgery was relatively new but my consultant had performed over eighty such procedure whereas the oncologist was trialing Cyberknife technique. I was/am very fit but due to the size of my prostate (age related) I was having urinary problem of frequency and difficulty urinating). Also RT/HT option as a backup seemed attractive. I had prostatectomy at the age of 71. Recovery was difficult (catheter in for 5 weeks). I am reasonably continent except when sexually excited (dribbling!) and also ED which is more due to my age than the surgery. At 84 and 79 we have an active 'new normal' sex life with the helps of VEDs and a vibrator. I am very very lucky that my PSA has remained steady at less than 0.003 since surgery. Treatments have moved on: robotic prostatectomies are normal now and very successful but so are HT/RT techniques. My advice is whatever you choose be confident because cure-rate for this cancer is better than when I had my surgery over 12 years ago. Obviously, don't want to influence you, if you choose surgery you can re-establish your intimate life, Have a look at this link: https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life 

Edited by member 15 Jul 2023 at 14:51  | Reason: Not specified

 '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 15 Jul 2023 at 06:20
Bear in mind that at T3, if you do opt for surgery, you have a high probability (roughly 50%) of subsequently requiring salvage RT, in which case you'll end up with the side-effects of both surgery and RT. Personally I'd just go for the RT in the first place!

Best wishes,

Chris

User
Posted 15 Jul 2023 at 08:58
Cambo, have they said whether your RP would be nerve sparing or non nerve sparing? They are two completely different things when considering treatment options.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 15 Jul 2023 at 12:53

Hi Paul,  Sorry to hear your diagnosis.  I was faced with the same decision with diagnosis in Jan 23.  Gleason Score 7 (4+3) CPG 3 Stage 1.   My decision was made a bit easier in that my Consultant suggested that because my Bladder was larger than normal, RT may cause damage to it. I also had the fears about incontinence etc etc.  I decided I would rather have it removed knowing that surgery would not be an option If I had RT first.  I had my RALP 8 March and was in hospital 3 nights due to low BP.   Catheter removed 2 weeks later.

Yes initially the incontinence was bad but by diligently doing the pelvic exercises things improved very quickly and the using pads gave me confidence to go out.  I have now been able to abandon the pads and to resume Bowling,  My follow up PSA at 3 months was < 0.01 which is considered undetectable.  my next test is in a couple of weeks.

You have to make your own decision, it is not easy but for me the relief of having the cancer removed in one procedure was the way to go.   

I wish you well.

Rob

 
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