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Decision re treatment

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User
Posted 13 Feb 2020 at 09:28

I had my meeting yesterday to discuss the results of my biopsy, not the results that I had hoped for we are where we are, staging is Gleason 3+4 , 4 out of 10 cores involved and % tissue 25 %.

i had actually prepared myself to be told that I had PC but when the specialist nurse to,d me that cancer had been found it was still a big shock.

i have been offered 3 types of treatment,

1. Radical Prostatectomy.

2. External Beam Radiotherapy.

3.Permanent Seed Brachytherapy.

 

Have been given loads of literature and information to assist me in making my decision so any information on experiences etc. would be much appreciated.

 

Regards

D

 

User
Posted 14 Feb 2020 at 12:46

Thank you to everyone for your replies,

I have spent the past 2 days reading up on the various treatments that I have been offered and I have decided to go down the Permanent Seed Brachytherapy route. My Specialist Nurse has advised that if after my meeting with the Consultant I change my mind I can.

I have found this website and the forums extremely beneficial in helping me and indeed supporting me in my deliberations.

I will keep you all informed as to how I get on

 

regards

 

David

User
Posted 13 Feb 2020 at 10:33

Have you had MRI scan to see where the tumours are so that they can give you a T stage?

It’s always a shock. I was in denial when I was told.  Almost an out of body experience.

Given that they are offering the range of treatments it sounds like things may be contained.

 

Ido4

User
Posted 13 Feb 2020 at 10:42

No this wasn’t discussed but I was told that the cancer was contained within the prostate.

User
Posted 13 Feb 2020 at 11:17

Whatto 'D',

I was diagnosed with PCa 10 years and 4 months ago and elected to have L.D.R.(Low Dose Radiation.) and had sixty odd radioactive seeds inserted into my Prostate on 20th April 2010. At the time of Diagnosis my PSA was 5.4 and today stumbles along at 2.5. I invite you to read my profile for more exact details. I am a PCa victim who can testify to the success of Brachytherapy(Seed Implantation)

I was aged 65 at the time of the procedure and for the past 10 years have lived a fully active life, travelling abroad regularly,enjoying life in general and continue to pursue my love of Golf playing 3 times every week.

If you would like to contact me via email for more fuller information of my experience you have my invitation to do so.

 

Michael. Chigwell2010.

 

User
Posted 13 Feb 2020 at 12:31

Been there in December....
Except I was given Gleason 4+4 (now upgraded to 4+5).

I am now 2 weeks post Robotic surgery (at UCLH), and feel fine
(apart from a bit of itching in my scars), and my continence is great.

4+3 is a much much better prognosis. You have more options and much more time to 
think them over.

Best of luck!

User
Posted 13 Feb 2020 at 12:34

Hi,

There are plenty of threads answering this type of question.

It's a hard call with age, Gleason being factors.  I was told the lesion was 13mm diameter near the edge of the apex which led me to believe surgery would give a good chance as none should be left behind near the bladder. 

I was told he'd take the nerves on one side.  It went pretty well.

On my profile is a link to my full account.

At the time I was hell bent on surgery asap as I didn't want it to grow any further.  I sometimes felt anxious about having an op although if you imagine going to sleep and waking up job done what more could you want.  You also know fast if it was successful as your psa goes to almost nothing. Nothing is certain though.

Brachytherapy wasn't offered to me but it sounds attractive and I believe it has fewer side effects.

It can depend on your own fears and hopes and whether you are very keen on retaining maximum sexual function. For me he could have castrated me if it gave a better chance. There is someone on here who refuses treatment to live a fuller life.  We're all different.

Let us know how you feel and how you're going.

Peter

 

 

User
Posted 13 Feb 2020 at 14:58

Hi D,

I can only give you my experience with Brachytherapy with Gleason 3+4=7 and 5 cores out of 20 positive.

I had Brachytherapy at Mount Vernon in London in September 2016 and found it quick and  easy operation as in and out with in two days.I started with PSA 2.19 in April 2016 age 70 and in the January meeting 2020 i was down to 0.18.

If you click on my Avatar you can see my journey so far and if you need any more details please just ask.

Good Luck John. 

User
Posted 13 Feb 2020 at 19:24

Hi 

I am pretty much same age as you. Biopsy was 3+3. Whereas histology post surgery showed 3+4. All localised. 

Originally advised to got active surveillance for a while but when I found out about the London Professor whocannotbenamedonhere and the Retzius sparing robotic assisted radical prostatectomy + NeuroSAFE I decided to bite the bullet and go for it. Had the op end of November at London Bridge with his side kick Da Vinci Xi. 

so far excellent outcome. Completely dry week 6 and no real ED (lucky as expected to lose mojo) issues to speak of. Less pain than a sore throat post op albeit one of two trials and tribulations and soreness with catheter...this group were epic in helping solve them. 

just had 3 month PSA bloods back as measured <0.01 so can’t ask for better news as a first result.

Knowing what I do about cancer made getting it out an easy choice for me. Just arm yourself with a high volume surgeon is my advice and chat to folks that have been on the journey.

the younger you have surgery the better too from a recovery perspective. I looked at RT but potential of secondary primaries later in life a consideration. Active surveillance and ongoing biopsies and scans also a consideration.

shout if you need anything as there is a wealth of knowledge here...without which would have seen me going down a completely different route and maybe outcome.

best

TG

User
Posted 13 Feb 2020 at 22:27

Originally Posted by: Online Community Member
the younger you have surgery the better too from a recovery perspective

 

..... and the greater the distress may be regarding long term side effects :-/  John was 50; all the advice and leaflets and websites in the world cannot prepare someone for dry orgasms, atrophy, incontinence, ED, lost sense of identity, depression, PSA anxiety, pressure on relationships, etc. Not all happen for every man but imagining what these things are like to live with probably doesn't even touch the edge of the reality. 

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

User
Posted 13 Feb 2020 at 23:18
Quick thought Lyn,

you are looking out for all of us (and I thank you) but who is looking out for you?

Take care

User
Posted 14 Feb 2020 at 02:22

Originally Posted by: Online Community Member

..... and the greater the distress may be regarding long term side effects :-/  John was 50; all the advice and leaflets and websites in the world cannot prepare someone for dry orgasms, atrophy, incontinence, ED, lost sense of identity, depression, PSA anxiety, pressure on relationships, etc. 

Matron is quite correct to point out the potential shortcomings of any treatment plan, but I think the alternative is somewhat bleaker!

The only ones that have affected me are dry orgasms (I would call them ‘sort of’ orgasms), atrophy, including what they call ‘change in physical appearance’ i.e. shrunken dick, and erectile dysfunction. Otherwise I am perfectly happy to be cancer-free (for now).

Best of luck.

Cheers, John.

 

User
Posted 14 Feb 2020 at 06:16
Thank you for the thought, Seldom. I would be fine if I could get some sleep but it just isn't happening :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Feb 2020 at 06:27
"but I think the alternative is somewhat bleaker!"

I don't disagree, Bollinge, although J has said consistently over the 10 years that he regrets having the surgery and a shorter life would have been preferable to life after RP. Of course he can't really know that, as advanced PCa would have led to many of the same problems.

My point in posting the above comment was that over the years it has seemed clear to me that men on here who struggle most with the side effects are those who were unaware of the risks or whose doctors glossed over the reality. We have seen too many men posting in distress because they leak when the catheter comes out or they haven't had an erection 2 days after surgery or they didn't know that they would grow boobs or whatever.

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

User
Posted 14 Feb 2020 at 09:17

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
the younger you have surgery the better too from a recovery perspective

 

..... and the greater the distress may be regarding long term side effects :-/  John was 50; all the advice and leaflets and websites in the world cannot prepare someone for dry orgasms, atrophy, incontinence, ED, lost sense of identity, depression, PSA anxiety, pressure on relationships, etc. Not all happen for every man but imagining what these things are like to live with probably doesn't even touch the edge of the reality. 

Exactly, but trying to get others to understand the wider impact this cancer has is so difficult 

Bri

User
Posted 09 Apr 2020 at 12:38

Very stressful dealing with delays. Hope you get treatment as soon as possible.

Ido4

User
Posted 09 Apr 2020 at 14:56
If you haven't already found my profile you may find it helpful. I had HT before LDR Brachy but to reduce the size of my Prostate before the procedure. Good luck

Tom

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User
Posted 13 Feb 2020 at 10:33

Have you had MRI scan to see where the tumours are so that they can give you a T stage?

It’s always a shock. I was in denial when I was told.  Almost an out of body experience.

Given that they are offering the range of treatments it sounds like things may be contained.

 

Ido4

User
Posted 13 Feb 2020 at 10:41

ThAnks for getting back to me, a lot of information to take in on the day but the cancer is contained in the prostrate, the initial staging was 3+3 but the consultant increased it to 3 + 4 after a second look

User
Posted 13 Feb 2020 at 10:42

No this wasn’t discussed but I was told that the cancer was contained within the prostate.

User
Posted 13 Feb 2020 at 11:17

Whatto 'D',

I was diagnosed with PCa 10 years and 4 months ago and elected to have L.D.R.(Low Dose Radiation.) and had sixty odd radioactive seeds inserted into my Prostate on 20th April 2010. At the time of Diagnosis my PSA was 5.4 and today stumbles along at 2.5. I invite you to read my profile for more exact details. I am a PCa victim who can testify to the success of Brachytherapy(Seed Implantation)

I was aged 65 at the time of the procedure and for the past 10 years have lived a fully active life, travelling abroad regularly,enjoying life in general and continue to pursue my love of Golf playing 3 times every week.

If you would like to contact me via email for more fuller information of my experience you have my invitation to do so.

 

Michael. Chigwell2010.

 

User
Posted 13 Feb 2020 at 12:31

Been there in December....
Except I was given Gleason 4+4 (now upgraded to 4+5).

I am now 2 weeks post Robotic surgery (at UCLH), and feel fine
(apart from a bit of itching in my scars), and my continence is great.

4+3 is a much much better prognosis. You have more options and much more time to 
think them over.

Best of luck!

User
Posted 13 Feb 2020 at 12:34

Hi,

There are plenty of threads answering this type of question.

It's a hard call with age, Gleason being factors.  I was told the lesion was 13mm diameter near the edge of the apex which led me to believe surgery would give a good chance as none should be left behind near the bladder. 

I was told he'd take the nerves on one side.  It went pretty well.

On my profile is a link to my full account.

At the time I was hell bent on surgery asap as I didn't want it to grow any further.  I sometimes felt anxious about having an op although if you imagine going to sleep and waking up job done what more could you want.  You also know fast if it was successful as your psa goes to almost nothing. Nothing is certain though.

Brachytherapy wasn't offered to me but it sounds attractive and I believe it has fewer side effects.

It can depend on your own fears and hopes and whether you are very keen on retaining maximum sexual function. For me he could have castrated me if it gave a better chance. There is someone on here who refuses treatment to live a fuller life.  We're all different.

Let us know how you feel and how you're going.

Peter

 

 

User
Posted 13 Feb 2020 at 13:33

Hi Michael,

Thanks for your reply, it was really helpful, I have read all the information that I received prior to asking the question on the forum, I was Leaning towards the permanent seed brachytherapy and your reply supports what I was thinking, I too am a golfer and active and this procedure appears to be the one that while providing the required treatment causes the least disruption to life

User
Posted 13 Feb 2020 at 13:46

Thanks Peter

User
Posted 13 Feb 2020 at 14:58

Hi D,

I can only give you my experience with Brachytherapy with Gleason 3+4=7 and 5 cores out of 20 positive.

I had Brachytherapy at Mount Vernon in London in September 2016 and found it quick and  easy operation as in and out with in two days.I started with PSA 2.19 in April 2016 age 70 and in the January meeting 2020 i was down to 0.18.

If you click on my Avatar you can see my journey so far and if you need any more details please just ask.

Good Luck John. 

User
Posted 13 Feb 2020 at 19:24

Hi 

I am pretty much same age as you. Biopsy was 3+3. Whereas histology post surgery showed 3+4. All localised. 

Originally advised to got active surveillance for a while but when I found out about the London Professor whocannotbenamedonhere and the Retzius sparing robotic assisted radical prostatectomy + NeuroSAFE I decided to bite the bullet and go for it. Had the op end of November at London Bridge with his side kick Da Vinci Xi. 

so far excellent outcome. Completely dry week 6 and no real ED (lucky as expected to lose mojo) issues to speak of. Less pain than a sore throat post op albeit one of two trials and tribulations and soreness with catheter...this group were epic in helping solve them. 

just had 3 month PSA bloods back as measured <0.01 so can’t ask for better news as a first result.

Knowing what I do about cancer made getting it out an easy choice for me. Just arm yourself with a high volume surgeon is my advice and chat to folks that have been on the journey.

the younger you have surgery the better too from a recovery perspective. I looked at RT but potential of secondary primaries later in life a consideration. Active surveillance and ongoing biopsies and scans also a consideration.

shout if you need anything as there is a wealth of knowledge here...without which would have seen me going down a completely different route and maybe outcome.

best

TG

User
Posted 13 Feb 2020 at 22:27

Originally Posted by: Online Community Member
the younger you have surgery the better too from a recovery perspective

 

..... and the greater the distress may be regarding long term side effects :-/  John was 50; all the advice and leaflets and websites in the world cannot prepare someone for dry orgasms, atrophy, incontinence, ED, lost sense of identity, depression, PSA anxiety, pressure on relationships, etc. Not all happen for every man but imagining what these things are like to live with probably doesn't even touch the edge of the reality. 

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

User
Posted 13 Feb 2020 at 23:18
Quick thought Lyn,

you are looking out for all of us (and I thank you) but who is looking out for you?

Take care

User
Posted 14 Feb 2020 at 02:22

Originally Posted by: Online Community Member

..... and the greater the distress may be regarding long term side effects :-/  John was 50; all the advice and leaflets and websites in the world cannot prepare someone for dry orgasms, atrophy, incontinence, ED, lost sense of identity, depression, PSA anxiety, pressure on relationships, etc. 

Matron is quite correct to point out the potential shortcomings of any treatment plan, but I think the alternative is somewhat bleaker!

The only ones that have affected me are dry orgasms (I would call them ‘sort of’ orgasms), atrophy, including what they call ‘change in physical appearance’ i.e. shrunken dick, and erectile dysfunction. Otherwise I am perfectly happy to be cancer-free (for now).

Best of luck.

Cheers, John.

 

User
Posted 14 Feb 2020 at 06:16
Thank you for the thought, Seldom. I would be fine if I could get some sleep but it just isn't happening :-/
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 14 Feb 2020 at 06:27
"but I think the alternative is somewhat bleaker!"

I don't disagree, Bollinge, although J has said consistently over the 10 years that he regrets having the surgery and a shorter life would have been preferable to life after RP. Of course he can't really know that, as advanced PCa would have led to many of the same problems.

My point in posting the above comment was that over the years it has seemed clear to me that men on here who struggle most with the side effects are those who were unaware of the risks or whose doctors glossed over the reality. We have seen too many men posting in distress because they leak when the catheter comes out or they haven't had an erection 2 days after surgery or they didn't know that they would grow boobs or whatever.

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

User
Posted 14 Feb 2020 at 09:17

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member
the younger you have surgery the better too from a recovery perspective

 

..... and the greater the distress may be regarding long term side effects :-/  John was 50; all the advice and leaflets and websites in the world cannot prepare someone for dry orgasms, atrophy, incontinence, ED, lost sense of identity, depression, PSA anxiety, pressure on relationships, etc. Not all happen for every man but imagining what these things are like to live with probably doesn't even touch the edge of the reality. 

Exactly, but trying to get others to understand the wider impact this cancer has is so difficult 

Bri

User
Posted 14 Feb 2020 at 12:46

Thank you to everyone for your replies,

I have spent the past 2 days reading up on the various treatments that I have been offered and I have decided to go down the Permanent Seed Brachytherapy route. My Specialist Nurse has advised that if after my meeting with the Consultant I change my mind I can.

I have found this website and the forums extremely beneficial in helping me and indeed supporting me in my deliberations.

I will keep you all informed as to how I get on

 

regards

 

David

User
Posted 14 Feb 2020 at 14:51

One question to throw in to the mix..maybe to ask your consultant. You mention in your bio that you had difficulty passing urine. Will Permanent Seed Brachytherapy fix this, or will you require additional treatment for it?

Kev.

User
Posted 09 Apr 2020 at 11:04
Just to update my situation.

I had my telephone consultation with my Consultant, we discussed my preferred option which is Brachytherapy, he advised me that Brachytherapy had been stopped 4 weeks ago due to the anaesthetists all being redeployed to CV, he then discussed the combined HT and external RT as an option but advised that in his opinion I had time to consider this, he did say that they would have a clearer picture about the Brachytherapy in 3 months time, my PSA has increased slightly from 5.6 to 6.2 from October to March so basically my treatment has been pushed down the line for 3 months.

User
Posted 09 Apr 2020 at 12:38

Very stressful dealing with delays. Hope you get treatment as soon as possible.

Ido4

User
Posted 09 Apr 2020 at 13:32

I would suggest you talk to your consultant about starting hormone therapy now. It will be needed before LDR/seed brachytherapy or external beam radiotherapy anyway, and it will stop the cancer in its tracks for now.

User
Posted 09 Apr 2020 at 14:56
If you haven't already found my profile you may find it helpful. I had HT before LDR Brachy but to reduce the size of my Prostate before the procedure. Good luck

Tom

User
Posted 09 Apr 2020 at 19:32

What was your T score?

 

User
Posted 09 Apr 2020 at 19:37

Humans Man

What was your T score?

User
Posted 09 Apr 2020 at 20:40

Hi my T score was 2a and Gleason score of ( 3+4 )and my PSA IN Oct was 5.6 and in March was 6.2.adde

Edited by member 09 Apr 2020 at 20:41  | Reason: Added PSA

User
Posted 09 Apr 2020 at 20:45

Consultant felt that there was no need at this stage to start HT, however in 3 months time and Brachytherapy is still not available I will be starting HT as part of external RT, not the way I want to go but in the current climate I may have no other choice, at least 8 have the option.

 
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