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first results after op and choice

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User
Posted 28 Jan 2015 at 16:23

HI all been to see surgeon on 20 of Jan who told test on what was removed showed  lymph nodes where clear but margin at base of prostrate showed some cancer just outside prostrate ,took blood for PSA and said it was debatable if all was removed . Saw RT consultant today 28 Jan who had PSA result as undetectable but went on to say it would 50/50 chance of returning and gave me three options, to have RT in about 3 months to wait and see if PSA rises and stay under the urologist care or to go on a trail where they treat you at different stages of PSA rise , has any body been on one of these trials? yours Andy

User
Posted 28 Jan 2015 at 18:26

Hi Andy
Yes I have, it is probably the radicals trial.

I had clear margins but My PSA never went to undetectable after LRP and urology transferred me to oncology, my oncologist recommended RT and enrolled me on the ADT duration part of Radicals - I got 2 years and am just coming to the end of that.

You can see my progress in my profile, I think the RT did the trick
Good luck
Andy

User
Posted 28 Jan 2015 at 19:16
Andy

I am fairly sure this is the radicals trial as mentioned, at least RT is an option after surgery, not the case the other way around. Trials often mean much closer medical attention so any problems tend to be picked up quickly and there is usually a trials clinical nurse you can contact just about any time.

Maybe someone at Newark get together will know a little more about this and almost certainly someone who you can ask about RT and what to expect.

It sounds as though you have some time to do as much research as you can so you now what the options are.

See you soon

XX

Mandy Mo

User
Posted 28 Jan 2015 at 19:45


Hi Andy,

I was given the opportunity of joining the RADICALS trial if it was deemed to be appropriate after my surgery.

Fortunately my post op results were better than I expected and I was not invited to join. ( see my profile )

If you do join the trial I'm pretty sure you will be monitored more closely than you would be otherwise.

Whatever path you choose I wish you well for a successful outcome.

I've tried to attach a link below that gives some basic info on the RADICALS trial... ( not sure if the link will work but you can copy and paste it to your browser I think )
Best Wishes
Luther



http://www.cancerresearchuk.org/about-cancer/trials/a-trial-looking-at-radiotherapy-and-hormone-therapy-after-surgery-for-prostate-cancer

User
Posted 29 Jan 2015 at 11:03

I had my RALP on 20th June.  The histology showed that there was a 2.5mm area of extra capsular spread but the margins were clear and all 11 nodes were free of malignancy.  The urology consultant said the spread increased the likelihood of recurrence and put this ay about a 20% risk.

Since then, three blood tests have shown PSA undetectable at <0.1.

I saw the oncologist to discuss the RADICALS trial and she told me that there was no indication to say whether radiotherapy now or when PSA started to rise was better.  Indeed, that was the point of the trial.  Having ascertained that radiotherapy now would not categorically rule out a recurrence and that there are side effects of the treatment, given that I have been very lucky not to have suffered from incontinence, I decided against the trial.  The oncologist had no problems with my decision.

 

 

User
Posted 17 Feb 2015 at 22:18
Hi Andy

Have they told you what the percentage chance is of a recurrance with your pathology? If so do they know what the chances are if you have RT?

The RADICALS trial is trying to determine the best way to treat high risk men. This trial started as a result of some smaller trials that indicated adjuvant RT had positive outcomes. I believe these trials favoured adjuvant RT over salvage RT. Really difficult call for you...why don't you see what your next PSA test is and take it from there. In the meantime you could do some research.

For info I had adjuvent RT and got through with no side effects (for now anyway). But my PSA had started to creep up which made my decision easy

Good luck

Bri

User
Posted 18 Feb 2015 at 08:49
Andy

The psa result is fantastic news however it must be frustrating for you when the urology team do not give you any specific guidance. Do you know if your case has been discussed by the joint team at their Friday MDT?

You could try ringing your CNS and say to her that you were expecting more information or guidance so that you could assess your options. In my experience the communication between urology and oncology at the hospital is pretty poor but talking to the allocated CNS seemed to have a better outcome.

It's still very early days for you since your treatment so Bri has made a good point maybe following his advice will give you a chance to go in to the next review ready to push for more specific answers.

Hope you are enjoying the gorgeous weather we have had the last few days.

Xx

Mo

User
Posted 18 Feb 2015 at 13:14

Andy

Still confused by what is being offered to you, but I am sure someone will be along to explain soon. I had positive margins and was told a 30 per cent chance of recurrence, my PSA is still down at 0.03 nine months post op. Have you tried to get a second opinion either thorough your hospital or GP ?  

Thanks Chris

 

User
Posted 26 Mar 2015 at 12:58

Went for CT scan on 17th march to much gas in me so on low fibre diet rebooked CT for 26th March which went ahead ok and tattoo marked for adjuvant RT to start on the 7th April for 33 sessions can,t wait . fully recovered from op no side effects and dry unless I lift heavy objects. Andy

User
Posted 28 Apr 2015 at 22:35
Andy

Good to see you posting Hooe your RT sessions all go well.

X

Mo

User
Posted 29 May 2015 at 06:55
Hi toddy,Ray here pal I had prostate removed. March 25 my phalogy report came back 2mm posteria and 1mm apex broken through?was worried as I was told it was contained. Before surgery toddy?i was sent to radiotherapy. And had a blood test two weeks and she recommended. I wait till my pas starts to rise?she also offered me raduophesrpy as she said where I was worried and gave me the option ?but she said lets wait till there is some trace cancer in ur next blood test late August so that's where I aim roddy? Be nice to stay in touch as we both under same situation fella Ray
User
Posted 29 May 2015 at 07:41

Good result Andy,

Nice to hear from you with good news.

Hope it continues for you.

dave

Edited by member 29 May 2015 at 07:42  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 01 Jun 2015 at 22:08

Hi Andy,

Not long to go now with the RT, hope you continue to avoid the side effects.

Hope the treatment works and you get good results.

Steve 

User
Posted 08 Jun 2015 at 10:19
Well done, Andy.

Steve

User
Posted 08 Jun 2015 at 12:53

Andy

Good news and reassuring to others who may be starting a similar course of treatment.

Thanks Chris

 

User
Posted 08 Jun 2015 at 21:04
Sounds good Andy long may it continue.

I think your 5 miles a day might consist of stepping out with a large IWH.

Xx

Mo

User
Posted 08 Jun 2015 at 21:51

Well done Andy. Just don't fall asleep on your walks.

I probably walk 5 miles playing golf - just wish I could do it every day but the OH thinks she's a golf widow as it is!

Paul

Stay Calm And Carry On.
User
Posted 09 Jun 2015 at 01:31

Congrats on sailing through the RT almost unscathed - judging from various members here, my guess is that having got this far without major problems you are unlikely to develop any serious side effects in the next few weeks xxx

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

User
Posted 09 Jun 2015 at 06:59

Well done Andy...They told me that any side effects would peak about two weeks after finishing RT.

At first I thought it was unusual to get a PSA test so soon after RT but remembered your PSA was negligible anyway prior to commencing RT.

Bri

User
Posted 09 Jun 2015 at 11:18

Thanks for all your kind words , Bri I have been told side effects may increase for about ten days then should tale off, and Mo the walk does consist of two IWH who give me no peace till they have had a walk Andy

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User
Posted 28 Jan 2015 at 18:26

Hi Andy
Yes I have, it is probably the radicals trial.

I had clear margins but My PSA never went to undetectable after LRP and urology transferred me to oncology, my oncologist recommended RT and enrolled me on the ADT duration part of Radicals - I got 2 years and am just coming to the end of that.

You can see my progress in my profile, I think the RT did the trick
Good luck
Andy

User
Posted 28 Jan 2015 at 19:16
Andy

I am fairly sure this is the radicals trial as mentioned, at least RT is an option after surgery, not the case the other way around. Trials often mean much closer medical attention so any problems tend to be picked up quickly and there is usually a trials clinical nurse you can contact just about any time.

Maybe someone at Newark get together will know a little more about this and almost certainly someone who you can ask about RT and what to expect.

It sounds as though you have some time to do as much research as you can so you now what the options are.

See you soon

XX

Mandy Mo

User
Posted 28 Jan 2015 at 19:45


Hi Andy,

I was given the opportunity of joining the RADICALS trial if it was deemed to be appropriate after my surgery.

Fortunately my post op results were better than I expected and I was not invited to join. ( see my profile )

If you do join the trial I'm pretty sure you will be monitored more closely than you would be otherwise.

Whatever path you choose I wish you well for a successful outcome.

I've tried to attach a link below that gives some basic info on the RADICALS trial... ( not sure if the link will work but you can copy and paste it to your browser I think )
Best Wishes
Luther



http://www.cancerresearchuk.org/about-cancer/trials/a-trial-looking-at-radiotherapy-and-hormone-therapy-after-surgery-for-prostate-cancer

User
Posted 29 Jan 2015 at 11:03

I had my RALP on 20th June.  The histology showed that there was a 2.5mm area of extra capsular spread but the margins were clear and all 11 nodes were free of malignancy.  The urology consultant said the spread increased the likelihood of recurrence and put this ay about a 20% risk.

Since then, three blood tests have shown PSA undetectable at <0.1.

I saw the oncologist to discuss the RADICALS trial and she told me that there was no indication to say whether radiotherapy now or when PSA started to rise was better.  Indeed, that was the point of the trial.  Having ascertained that radiotherapy now would not categorically rule out a recurrence and that there are side effects of the treatment, given that I have been very lucky not to have suffered from incontinence, I decided against the trial.  The oncologist had no problems with my decision.

 

 

User
Posted 17 Feb 2015 at 21:14

saw urology consultant today who confirmed previous report psa undetectable , also went through histology report clear seminal vessels ,clear lymph nodes ,margins at base, still unsure what to do may toss a coin joy .Andy

Edited by member 17 Feb 2015 at 21:16  | Reason: Not specified

User
Posted 17 Feb 2015 at 22:18
Hi Andy

Have they told you what the percentage chance is of a recurrance with your pathology? If so do they know what the chances are if you have RT?

The RADICALS trial is trying to determine the best way to treat high risk men. This trial started as a result of some smaller trials that indicated adjuvant RT had positive outcomes. I believe these trials favoured adjuvant RT over salvage RT. Really difficult call for you...why don't you see what your next PSA test is and take it from there. In the meantime you could do some research.

For info I had adjuvent RT and got through with no side effects (for now anyway). But my PSA had started to creep up which made my decision easy

Good luck

Bri

User
Posted 18 Feb 2015 at 08:49
Andy

The psa result is fantastic news however it must be frustrating for you when the urology team do not give you any specific guidance. Do you know if your case has been discussed by the joint team at their Friday MDT?

You could try ringing your CNS and say to her that you were expecting more information or guidance so that you could assess your options. In my experience the communication between urology and oncology at the hospital is pretty poor but talking to the allocated CNS seemed to have a better outcome.

It's still very early days for you since your treatment so Bri has made a good point maybe following his advice will give you a chance to go in to the next review ready to push for more specific answers.

Hope you are enjoying the gorgeous weather we have had the last few days.

Xx

Mo

User
Posted 18 Feb 2015 at 13:14

Andy

Still confused by what is being offered to you, but I am sure someone will be along to explain soon. I had positive margins and was told a 30 per cent chance of recurrence, my PSA is still down at 0.03 nine months post op. Have you tried to get a second opinion either thorough your hospital or GP ?  

Thanks Chris

 

User
Posted 18 Feb 2015 at 13:27

Thanks Bri and Mo urology consultant is seeing me in about 10 weeks after another psa he did go through options with me and said early RT had the edge, but this was still up in the air and i would have the possible side effects to consider and it would have to be my decision , as they required a reply if i was going on the radicals trial this week I phoned this morning to say i would not be and would be going with the early RT option . I am enjoying the weather Mo and trying to catch up with the outside jobs( think there is no chance as i cleared up one area went round the other side and those wolfhounds had dug a hole which would make a good pond lol) .thanks Andy

User
Posted 26 Mar 2015 at 12:58

Went for CT scan on 17th march to much gas in me so on low fibre diet rebooked CT for 26th March which went ahead ok and tattoo marked for adjuvant RT to start on the 7th April for 33 sessions can,t wait . fully recovered from op no side effects and dry unless I lift heavy objects. Andy

User
Posted 28 Apr 2015 at 21:57

started adjuvant RTon the 21 April, had blood test told today this showed psa still undetectable so 28 more visits to go getting to make friends with some i see most days and compare how we are getting on .Andy

User
Posted 28 Apr 2015 at 22:35
Andy

Good to see you posting Hooe your RT sessions all go well.

X

Mo

User
Posted 29 May 2015 at 06:55
Hi toddy,Ray here pal I had prostate removed. March 25 my phalogy report came back 2mm posteria and 1mm apex broken through?was worried as I was told it was contained. Before surgery toddy?i was sent to radiotherapy. And had a blood test two weeks and she recommended. I wait till my pas starts to rise?she also offered me raduophesrpy as she said where I was worried and gave me the option ?but she said lets wait till there is some trace cancer in ur next blood test late August so that's where I aim roddy? Be nice to stay in touch as we both under same situation fella Ray
User
Posted 29 May 2015 at 07:41

Good result Andy,

Nice to hear from you with good news.

Hope it continues for you.

dave

Edited by member 29 May 2015 at 07:42  | Reason: Not specified

All we can do - is do all that we can.

So, do all you can to help yourself, then make the best of your time. :-)

I am the statistic.

User
Posted 01 Jun 2015 at 21:45

Thanks Dave & Ray just 5 more days on RT to go , going well incontinence back to one pad a day and just aching in treatment area apart from this no other side effects as yet. Andy

Edited by member 01 Jun 2015 at 21:46  | Reason: Not specified

User
Posted 01 Jun 2015 at 22:08

Hi Andy,

Not long to go now with the RT, hope you continue to avoid the side effects.

Hope the treatment works and you get good results.

Steve 

User
Posted 08 Jun 2015 at 10:08

Finished Rt today gone quiet well just dull pain in treatment area think walking 5 miles a day has helped , do nod off a few times a day but told this is normal and I have done well to avoid other side effects ,about 6 weeks to see consultant and next psa results joy . Andy

Edited by member 08 Jun 2015 at 13:47  | Reason: Not specified

User
Posted 08 Jun 2015 at 10:19
Well done, Andy.

Steve

User
Posted 08 Jun 2015 at 12:53

Andy

Good news and reassuring to others who may be starting a similar course of treatment.

Thanks Chris

 

User
Posted 08 Jun 2015 at 21:04
Sounds good Andy long may it continue.

I think your 5 miles a day might consist of stepping out with a large IWH.

Xx

Mo

User
Posted 08 Jun 2015 at 21:51

Well done Andy. Just don't fall asleep on your walks.

I probably walk 5 miles playing golf - just wish I could do it every day but the OH thinks she's a golf widow as it is!

Paul

Stay Calm And Carry On.
User
Posted 09 Jun 2015 at 01:31

Congrats on sailing through the RT almost unscathed - judging from various members here, my guess is that having got this far without major problems you are unlikely to develop any serious side effects in the next few weeks xxx

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

User
Posted 09 Jun 2015 at 06:59

Well done Andy...They told me that any side effects would peak about two weeks after finishing RT.

At first I thought it was unusual to get a PSA test so soon after RT but remembered your PSA was negligible anyway prior to commencing RT.

Bri

User
Posted 09 Jun 2015 at 11:18

Thanks for all your kind words , Bri I have been told side effects may increase for about ten days then should tale off, and Mo the walk does consist of two IWH who give me no peace till they have had a walk Andy

 
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