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User
Posted 27 Nov 2019 at 13:25

Hi all,


I’ve just turned 50 & just been diagnosed with PC. An inheritance from my father I would guess but the positive from this is I went to have my PSA checked, if he hadn’t then I doubt I’d have gone. So if I can be thankful for one thing this is  it.


My PSA is 4.22 & I have a Gleason on 3+4, my biopsy showed the calls to be localised on one side of my prostate.


I was just really after advice/comments re my treatment, as the conversation with the nurse was quite a lot to take in. I’ve had a brief look at the options & my early thoughts are that surgery seems to be the ‘nuclear option’.


Thanks in advance for any advice/comments, they’re much appreciated.

User
Posted 27 Nov 2019 at 14:49

Good afternoon, Lee.  Sorry to see you here, especially at the young age of 50.


I'm not as expert as some of the members of the forum, but it seems to me that you will have some level of choice in your treatment.  However, I was diagnosed at the age of 46 and, partly because I was young and partly because I had a T3a at diagnosis, they said surgery was my best option.   Several younger men have made the comment that they are advised to 'have it out'.  Talk to the specialist nurses at PCUK and I'm sure other members will come along to explain your options.  I've been on the forum for three years now and still rely on the knowledge of members to help me make my decisions.  


Ulsterman 

User
Posted 27 Nov 2019 at 15:10
Download the toolkit from PCUK. It has lots of advice and information about PCa and treatment
Bri
User
User
Posted 27 Nov 2019 at 16:11

Hi Baggers, I was 50 when diagnosed, with a PSA of 4.6, T2b localised.  You can read my profile which describes my particular journey to date.


Time is very much on your side, so as others have said download the toolkit to learn more about the various treatment options. By all means post any questions and there are also prostate nurses you can speak to if need be.


Best


Flexi

User
Posted 27 Nov 2019 at 16:26

Hi,  This is a common question and I think there was one a couple of days ago. The general options for a low risk patient are (without checking the spelling):


Active Surveillance with perhaps more tests.


Surgery:  Robotic or Laporoscopic Prostatectomy.  Rezius Sparing Prostatectomy.  Open Prostatectomy.


Hormones and Radiotherapy, followed by more hormones.


Hormones and Brachytherapy followed by more Hormones


There's a general view that Surgery and RT have very similar outcomes although RT might get stray cells.  Also less fit patients will only be offered RT.  Surgery gives you a quick answer on your condition, RT doesn't.


My own thoughts were I wanted it cut out immediately, in fact the day before.  Many take a more measured view and look around as many hospitals don't offer a complete range or options.


I'm sure others will expand on the above. It's a lot to take in.  Thinking about side effects and personal preferences and emotions.


All the Best
Peter

User
Posted 27 Nov 2019 at 19:10
I had Brachytherapy and Hormone therapy was not offered or required.

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 27 Nov 2019 at 20:01

Sorry to see you here Baggers


I was 52 when diagnosed. Gleason 7 , like you, localised.


The decision  was somewhat straightforward in my case as I had obstructive symptoms and was going to have to have surgery of some sort in a year or two and therefore decided to go for surgery.


Recovery from surgery generally straightforward, but think hard about incontinence issues and erectile dysfunction (ED). Incontinence is a real nuisance although this improves over time in most. ED may not improve in a proportion, although there are other means to keep your sex life active. As its localised you will have nerve sparing that increases the chances of ED improving over time. You will obviously be sterile.


I havent concentrated on RT or HT, but reading through he forum looks like the treatment takes a long time and has its own downside/complications which others will explain better.


Time is on your side 


One thing to have it in your head, you are not going to die because of this.


Thala


 


 


 

User
Posted 28 Nov 2019 at 07:34

Originally Posted by: Online Community Member


As its localised you will have nerve sparing that increases the chances of ED improving over time.


 


 


 



Thala


Localised doesn't mean nerve sparing is guaranteed. It depends on the exact location of the tumor. I had localised gleeson 3+4 and had nerve sparing one side only, some have no nerve sparing and others have full nerve sparing.


Cheers


Bill


 

User
Posted 28 Nov 2019 at 09:26

Baggers,


Your diagnosis, as far as you've given (PSA 4.22, G 7, and probably T2a or T2b) is quite favourable for a prostatectomy. Two bits of information are missing though - how near the edge it is, and if you are likely to be able to have nerve sparing so there's a chance erections will recover afterwards. If it's near the edge, that reduces the chance of the prostatectomy working, and you might then also have to have RT, in which case you should consider having just RT in the first place. If nerves won't be spared and sex is important, again, consider RT as that has a better chance of preserving erections.


If you decide on RT as a primary treatment, there are a number of choices. EBRT (external beam) is what most people will think of first, but you may be suitable for a more closely targeted radiotherapy such brachytherapy (internal radiotherapy) or stereotactic radiotherapy (SBRT, or by a trade name Cyberknife), which are more precision treatments and come with fewer side effects. The downside of RT is that as a younger person, you have a long period of life ahead, and as RT treatments have a small risk of creating cancers decades ahead, that risk will be higher for you than for an 80 year old, where they aren't going to live long enough for that to happen.


As a T2a or T2b, you might also be a suitable candidate for HIFU where the areas of cancer are destroyed by High Intensity Focused Ultrasound. This is focal treatment (targets just the cancer), but is much less proven by data than the other treatments, due to far fewer treatments.


You will probably only be offered treatments which your cancer centre provides (or other centres linked to it). If you want to investigate something like HIFU, you would have to be asked to be referred to one of the hospitals currently trialing it on the NHS.

User
Posted 28 Nov 2019 at 10:37
One other thing to consider with RT is that if it doesn't work prostatectomy is very difficult afterwards if possible at all.

I was T2c pre op and was told beforehand that only nerves one side could be spared. It turned out that I had extra capsular extension so T3. I don't think I would have been offered RP if I was T3 pre op.

As it happens PSA is still undetectable after nearly 3 years. ED recovery is slow but continues still.

Good luck whichever way you go

Cheers
Bill

User
Posted 28 Nov 2019 at 16:46

Hi Baggers,


I'm no expert but, I knew pretty much from the outset what treatment I didn't want, so when nerve sparing surgery was offered, I took it.


My priorities for post op were as follows:


Urinary continence


Erectile function


Nerve sparing


I discussed it with my oncologist an surgeon. The "nuclear option" suited me and I have no regrets.Some people don't want to go under the knife, but for me, it was my best way forward.


I saw it as a rocky road with no guarantees.. so a few things to bear in mind, or questions to ask.. Surgeon's skill? Penis shorter? nerve sparing margins (proximity of cancer to nerves)? Return of cancer? 

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User
Posted 27 Nov 2019 at 14:49

Good afternoon, Lee.  Sorry to see you here, especially at the young age of 50.


I'm not as expert as some of the members of the forum, but it seems to me that you will have some level of choice in your treatment.  However, I was diagnosed at the age of 46 and, partly because I was young and partly because I had a T3a at diagnosis, they said surgery was my best option.   Several younger men have made the comment that they are advised to 'have it out'.  Talk to the specialist nurses at PCUK and I'm sure other members will come along to explain your options.  I've been on the forum for three years now and still rely on the knowledge of members to help me make my decisions.  


Ulsterman 

User
Posted 27 Nov 2019 at 15:00

Hi Ulsterman,


 


46, I’m sorry to hear that, thank you for taking the time to reply, much appreciated. I will contact them when I’m out of hospital. Unrelated issue. 


The nurse I speaking with last week spent quite a lot of time talking about the various options but if I’m being honest the news kind of blew my mind, so didn’t really process it too much. I think I recall him saying it was a T2 but didn’t specify anything more. 


It’s early day’s, I suspect I’ll find out more as time goes on. Again, thanks & hope all is ok with you.


Lee

User
Posted 27 Nov 2019 at 15:10
Download the toolkit from PCUK. It has lots of advice and information about PCa and treatment
Bri
User
User
Posted 27 Nov 2019 at 16:11

Hi Baggers, I was 50 when diagnosed, with a PSA of 4.6, T2b localised.  You can read my profile which describes my particular journey to date.


Time is very much on your side, so as others have said download the toolkit to learn more about the various treatment options. By all means post any questions and there are also prostate nurses you can speak to if need be.


Best


Flexi

User
Posted 27 Nov 2019 at 16:26

Hi,  This is a common question and I think there was one a couple of days ago. The general options for a low risk patient are (without checking the spelling):


Active Surveillance with perhaps more tests.


Surgery:  Robotic or Laporoscopic Prostatectomy.  Rezius Sparing Prostatectomy.  Open Prostatectomy.


Hormones and Radiotherapy, followed by more hormones.


Hormones and Brachytherapy followed by more Hormones


There's a general view that Surgery and RT have very similar outcomes although RT might get stray cells.  Also less fit patients will only be offered RT.  Surgery gives you a quick answer on your condition, RT doesn't.


My own thoughts were I wanted it cut out immediately, in fact the day before.  Many take a more measured view and look around as many hospitals don't offer a complete range or options.


I'm sure others will expand on the above. It's a lot to take in.  Thinking about side effects and personal preferences and emotions.


All the Best
Peter

User
Posted 27 Nov 2019 at 19:10
I had Brachytherapy and Hormone therapy was not offered or required.

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 27 Nov 2019 at 20:01

Sorry to see you here Baggers


I was 52 when diagnosed. Gleason 7 , like you, localised.


The decision  was somewhat straightforward in my case as I had obstructive symptoms and was going to have to have surgery of some sort in a year or two and therefore decided to go for surgery.


Recovery from surgery generally straightforward, but think hard about incontinence issues and erectile dysfunction (ED). Incontinence is a real nuisance although this improves over time in most. ED may not improve in a proportion, although there are other means to keep your sex life active. As its localised you will have nerve sparing that increases the chances of ED improving over time. You will obviously be sterile.


I havent concentrated on RT or HT, but reading through he forum looks like the treatment takes a long time and has its own downside/complications which others will explain better.


Time is on your side 


One thing to have it in your head, you are not going to die because of this.


Thala


 


 


 

User
Posted 28 Nov 2019 at 07:34

Originally Posted by: Online Community Member


As its localised you will have nerve sparing that increases the chances of ED improving over time.


 


 


 



Thala


Localised doesn't mean nerve sparing is guaranteed. It depends on the exact location of the tumor. I had localised gleeson 3+4 and had nerve sparing one side only, some have no nerve sparing and others have full nerve sparing.


Cheers


Bill


 

User
Posted 28 Nov 2019 at 09:26

Baggers,


Your diagnosis, as far as you've given (PSA 4.22, G 7, and probably T2a or T2b) is quite favourable for a prostatectomy. Two bits of information are missing though - how near the edge it is, and if you are likely to be able to have nerve sparing so there's a chance erections will recover afterwards. If it's near the edge, that reduces the chance of the prostatectomy working, and you might then also have to have RT, in which case you should consider having just RT in the first place. If nerves won't be spared and sex is important, again, consider RT as that has a better chance of preserving erections.


If you decide on RT as a primary treatment, there are a number of choices. EBRT (external beam) is what most people will think of first, but you may be suitable for a more closely targeted radiotherapy such brachytherapy (internal radiotherapy) or stereotactic radiotherapy (SBRT, or by a trade name Cyberknife), which are more precision treatments and come with fewer side effects. The downside of RT is that as a younger person, you have a long period of life ahead, and as RT treatments have a small risk of creating cancers decades ahead, that risk will be higher for you than for an 80 year old, where they aren't going to live long enough for that to happen.


As a T2a or T2b, you might also be a suitable candidate for HIFU where the areas of cancer are destroyed by High Intensity Focused Ultrasound. This is focal treatment (targets just the cancer), but is much less proven by data than the other treatments, due to far fewer treatments.


You will probably only be offered treatments which your cancer centre provides (or other centres linked to it). If you want to investigate something like HIFU, you would have to be asked to be referred to one of the hospitals currently trialing it on the NHS.

User
Posted 28 Nov 2019 at 10:37
One other thing to consider with RT is that if it doesn't work prostatectomy is very difficult afterwards if possible at all.

I was T2c pre op and was told beforehand that only nerves one side could be spared. It turned out that I had extra capsular extension so T3. I don't think I would have been offered RP if I was T3 pre op.

As it happens PSA is still undetectable after nearly 3 years. ED recovery is slow but continues still.

Good luck whichever way you go

Cheers
Bill

User
Posted 28 Nov 2019 at 16:46

Hi Baggers,


I'm no expert but, I knew pretty much from the outset what treatment I didn't want, so when nerve sparing surgery was offered, I took it.


My priorities for post op were as follows:


Urinary continence


Erectile function


Nerve sparing


I discussed it with my oncologist an surgeon. The "nuclear option" suited me and I have no regrets.Some people don't want to go under the knife, but for me, it was my best way forward.


I saw it as a rocky road with no guarantees.. so a few things to bear in mind, or questions to ask.. Surgeon's skill? Penis shorter? nerve sparing margins (proximity of cancer to nerves)? Return of cancer? 

User
Posted 28 Nov 2019 at 19:22

Originally Posted by: Online Community Member
One other thing to consider with RT is that if it doesn't work prostatectomy is very difficult afterwards if possible at all.


I see this comment often, but I think it's largely bogus.


In most circumstances where prostatectomy fails (patient was too high a risk in the first place, or has been restaged to too high a risk after histology), RT would not have failed, and if it had been done in the first place, side effects would have been less than having both procedures, particularly ED and incontinence.


When RT fails, failure in the target area is rare, so chances are that removal of prostate isn't likely to solve anything, even if it was easy to do afterwards.

User
Posted 29 Nov 2019 at 09:32

My surgeon told me ( in the pre-op interview) that Surgery would be very much


more difficult and probably not offered if after a course of RT.

 
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