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Post op follow up

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User
Posted 18 Jun 2016 at 15:13

Had my prostatectomy 9 weeks ago . Follow up appointment just this week . Consultant gave me a histology report which was all a bit confusing to me . Says I have Margin positive .pT2c+ ,fat Unremarkable . He also said , I think , PSA 0.016 , following the op .Then he talked about the RADICALS trial . I've another PSA test in 6 weeks followed by another appt . At this point the thoughts of radiotherapy seems a bit extreme to me . What do others think ?

User
Posted 18 Jun 2016 at 21:53
A

There are some guys who had RT soon after surgery I am sure they will be along soon.

I assume you were offered RADICALS due to the positive margin.

I had positive margins and a PSA of 0.03 post op but was not offered RT. My PSA has been slowly rising in the last 2 years, another PSA test on Tuesday next week will be interesting.

Thanks Chris

User
Posted 18 Jun 2016 at 22:53

Our local cancer centre is taking part in the bit if RADICALS that offers RT to men after surgery regardless of whether there was a positive margin. The results so far have been very convincing that men who have surgery followed by RT are more likely to get full remission than those who have only surgery. John waited but his PSA slowly crept up and he had salvage DR / HT 2 years later.

In your case, it might be a good idea to clarify with the surgeon at the next appointment whether your PSA was 0.16 or 0.016 and whether you have been offered RADICALS because of your PSA + margin or on the arm I described above?

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

User
Posted 19 Jun 2016 at 09:08
One other consideration that comes to mind is how continent you are following surgery. Comming to the end of my salvage EBRT I fully understand why I would not have been able to do this earlier as I would not have been able to hold a bladder full of water which you need to be able to do in order to minimize the risk of damage.

Kevan

User
Posted 19 Jun 2016 at 21:03

Hi Alan I had positive margins at post op and was offered to go on trial or wait and see or adjuvant RT my post op psa was undetectable , but I opted for RT , which I had about 4 months after op when I had control of my bladder and time to heal. Only side effects was I went back to one pad a day for a short period near the end of RT and fatigue, just coming up to my 18month psa week on Monday for result so fingers crossed . Hard decision for you all the best Andy

User
Posted 20 Jun 2016 at 08:51

Hi the radicals trial does have eligibity stipulations ie

One or more of
Pre op PSA >10
Gleason 7-10
Positve margin

Also need to have RT within 22 weeks of the RP

Bri

User
Posted 22 Jun 2016 at 19:31

Alan

Teddyedward  had positive margins and adjuvant RT and so far at 18 months his PSA is undetectable, subject to Monday's test. I had positive margins and no adjuvant RT my PSA has slowly risen to 0.13 at 26 months and future RT possible. The chairman of our support group is 16 years cancer free after open surgery and no other treatment. Hard Choice.

Thanks Chris

 

Edited by member 22 Jun 2016 at 19:33  | Reason: Not specified

User
Posted 14 Aug 2016 at 15:18
I'm no expert but that sounds good to me, Alan

All the best

Arthur

User
Posted 14 Aug 2016 at 16:45
I was told that 0.2 is the point at which salvage RT is considered and so 0.05 looks good to me as well.

Kevan

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User
Posted 18 Jun 2016 at 21:53
A

There are some guys who had RT soon after surgery I am sure they will be along soon.

I assume you were offered RADICALS due to the positive margin.

I had positive margins and a PSA of 0.03 post op but was not offered RT. My PSA has been slowly rising in the last 2 years, another PSA test on Tuesday next week will be interesting.

Thanks Chris

User
Posted 18 Jun 2016 at 22:53

Our local cancer centre is taking part in the bit if RADICALS that offers RT to men after surgery regardless of whether there was a positive margin. The results so far have been very convincing that men who have surgery followed by RT are more likely to get full remission than those who have only surgery. John waited but his PSA slowly crept up and he had salvage DR / HT 2 years later.

In your case, it might be a good idea to clarify with the surgeon at the next appointment whether your PSA was 0.16 or 0.016 and whether you have been offered RADICALS because of your PSA + margin or on the arm I described above?

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

User
Posted 19 Jun 2016 at 09:08
One other consideration that comes to mind is how continent you are following surgery. Comming to the end of my salvage EBRT I fully understand why I would not have been able to do this earlier as I would not have been able to hold a bladder full of water which you need to be able to do in order to minimize the risk of damage.

Kevan

User
Posted 19 Jun 2016 at 11:58

Thanks , guess I need to clarify the P S A result and hope that the following appt then shows no sign of going up . Otherwise I guess it's Hobsons choice .

User
Posted 19 Jun 2016 at 12:07

Yeah , thanks . Still not fully continent myself , although it's getting better .[Surely there must be other ways of re-gaining continence not just Kegals ?]. Just feel the things I've already put on hold for the last 3 mths , playing footy , running , going to the gym , volunteering for the Red Cross ,as well a bit of intimacy and a pint or two , are a long way off and the thoughts of extending that time frame doesn't thrill me . The next PSA test will be crucial I guess .

User
Posted 19 Jun 2016 at 21:03

Hi Alan I had positive margins at post op and was offered to go on trial or wait and see or adjuvant RT my post op psa was undetectable , but I opted for RT , which I had about 4 months after op when I had control of my bladder and time to heal. Only side effects was I went back to one pad a day for a short period near the end of RT and fatigue, just coming up to my 18month psa week on Monday for result so fingers crossed . Hard decision for you all the best Andy

User
Posted 20 Jun 2016 at 08:51

Hi the radicals trial does have eligibity stipulations ie

One or more of
Pre op PSA >10
Gleason 7-10
Positve margin

Also need to have RT within 22 weeks of the RP

Bri

User
Posted 22 Jun 2016 at 19:31

Alan

Teddyedward  had positive margins and adjuvant RT and so far at 18 months his PSA is undetectable, subject to Monday's test. I had positive margins and no adjuvant RT my PSA has slowly risen to 0.13 at 26 months and future RT possible. The chairman of our support group is 16 years cancer free after open surgery and no other treatment. Hard Choice.

Thanks Chris

 

Edited by member 22 Jun 2016 at 19:33  | Reason: Not specified

User
Posted 14 Aug 2016 at 14:37

P S A now down to 0.05 .Should I have hoped for it to be less or is this reasonable 4 months post op ?

User
Posted 14 Aug 2016 at 15:18
I'm no expert but that sounds good to me, Alan

All the best

Arthur

User
Posted 14 Aug 2016 at 16:45
I was told that 0.2 is the point at which salvage RT is considered and so 0.05 looks good to me as well.

Kevan

User
Posted 14 Aug 2016 at 20:33

I'm back playing footy and going to the gym and doing my volunteering at Red Cross .Still not got rid of the pads and hoping to have a try at being a sex god soon .Life,s gradually getting back to normal thank goodness.
Thanks everyone for the advice and support - hope I can give another positive report back following my next follow-up appt in 3 months time .

User
Posted 02 Dec 2016 at 12:43

Just got back from latest appt with Consultant . PSA gone up slightly to 0.08 . He said nothing to worry about at this stage - not that reassuring in my mind though .

Still not absolutely dry and wear a pad some days dependent on what I'm doing ,so still making slow progress in that respect .

Consultant was concerned about my E D and stressed the importance of using the vacuum pump plus tablets for rehab purposes as much as sex . Attempts at getting back a sex life so far been a flop and all the messing about with the pump and tablets doesn't exactly act as a turn on .Consultant stressed we need to keep trying .

Important thing is I'm still here to tell the tale and nearly back to pre-op lifestyle .

Best wishes and good luck to you all .

 
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