I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

News about my disease

Email this conversation Print this conversation
User
Posted 28 Apr 2016 at 17:45

I ended up getting my pathology and first post-op PSA results today at a review with the consultant.

My 4+3 had gone through the capsule in a 3mm area, so I am T3a.

This is not something he would suggest any treatment for. He informed me about a trial of radiotherapy versus nothing for this stage disease, but pretty much advised against it, and I wouldn't have gone for it as I don't want radiotherapy if I can avoid it.

He said that 1% of people at my stage would die of PCa in 15 years.

I  am over the moon about that last bit. I will take that after some of the scenarios that have gone through my imagination. I am also very pleased about the no more treatment bit.

I had a blood test at the GP's this morning, and it was already on the hospital computer: <0.1 (they don't believe in the super-sensitive machines). Again - great news that this is already 'undetectable'.

I feel so pleased and relieved. I don't have to have any treatment, so I don't have to risk more side-effects. I have been back at work this week. When people ask whether I am pleased to be back at work I have never been able to say 'yes' with such an absence of qualification: I  am very pleased indeed to (be well enough to) be back at work!!

I can focus on dealing with the incontinence and ED now. For the former, I am doing my 'squeezing', as the  surgeon called it, and gradually increasing my level of activity. For the latter I am on Cialis 5 mg daily, using a pump, and using a Viberect, plus I have an appointment for injections in a fortnight.

Next PSA in 3 months or so.

One other thing my consultant mentioned was that the results showed I definitely did need treatment. That was good to hear, too. I have felt at times that this might have been avoidable. (Interesting, the implication that he feels he sometimes does treatment that turns out not to have been necessary.) The HIFU would not have been right for my disease. 

Of course no one knows what will happen, and even the great Mr D can't make promises, but for the moment it's good. Long may it last.

Champagne is on ice.

 

 

User
Posted 28 Apr 2016 at 19:40

Hi Henry
Seems like you are happy and that is half the fight really. You have sort of the same mind-set as me. Unfortunate that there may be spread , but hey let's face it you have the luxury of being undetectable and can keep an eye on it. If it moves you can wait till almost 0.2 before deciding on RT or not. That could be years. If EF hasn't returned then you might go for it. If you are potent again you can make a choice. I'm glad you have that choice Henry. You're lucky. Well lucky in that you're undetectable. Best wishes
Chris

User
Posted 28 Apr 2016 at 20:22

Hi Henry

Your histology and follow up PSA sound much the same as mine, and reading your post, we seem to have reacted to it in a similar fashion, and with the same self reassurance that  treatment was, in fact , needed.

If I'm honest, maybe I was not initially  as sanguine as you. I did have an attack of the collywobbles in the hours following the meeting, probably because I didn't calmly weigh thing up- I had the daft idea of a 500 mile drive down to the New Forest to buy a car straight after my meeting, preceded by insomnia, and followed by driving back the next day.

Interesting to hear you've acquired a Viberect. I received the prescription for the Erecaid esteem today (and after the advice on here, got the GP to add  a couple of packs of differing  tension rings to the scrip').  I'm waiting to see if  the pump is helpful before thinking about injections- which I would rather avoid- not from squeamishness about the procedure, more about the risk of developing Peyronie's ( I have yet to study the evidence on this).

Still no erections- maybe a 'mini-me' now and again, as a change from the 'shar-pei' lookalike, or the relevant bit of Michelangelo's David. I've just  laughed out loud at the notion that I've just  broadcast my new look to the internet! 

 

I shall raise a glass of alcoholic non-champagne to your good news!

User
Posted 28 Apr 2016 at 20:50

H

My stats are also similar to yours 4+3 T3a, also had 2mm positive margins. Two years ago today (28th April) with the help of my surgeon, his robot and a surgical team I said goodbye to my prostate and possibly my cancer.  I still feel a bit in limbo, the PSA started at 0.03 and is still low but slowly rising, 0.07 a month ago, so not sure if the more sensitive results are good or bad. My consultant has many patients who level off at 0.1. The Ed is improving with medication but not sure I will ever achieve pre op status.

All the best with your recovery.

Thanks Chris

 

 

Edited by member 28 Apr 2016 at 20:50  | Reason: Not specified

User
Posted 29 Apr 2016 at 00:06

Surely they would be pushing you towards adjuvant RT if the margin had been positive? Extra capsular extension with a negative margin I can see why you would opt for a wait & see approach; John waited for 2 years until it was absolutely obvious that further treatment was needed but I can't imagine that they would delay with a positive margin?

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

User
Posted 29 Apr 2016 at 19:52

Whilst i want to celebrate your good news i do agree with Lyn. If you have been told the margin was positive i would want to know my options

I had a focal breech also and my consultant told me i had a 30% chance of needing more treatment, where do they get their stats from??
I had the sensitive PSA tests and it started to rise so i, on the advice of the oncologist, opted for RT even though it was still effectively <0.1
My last PSA was 0.01 so think i made the right decision

My post isnt meant to p**s on your bonfire but it's about sharing experiences

Bri

User
Posted 30 Apr 2016 at 12:04

My histology seems much the same, at T3a with positive margin and Gleason 3+4 with 3 at the margin . I dont know if it is  a focal or widespread positive margin. My consultant gave me much the same future management options as Henry.

Googling 'positive margin prostatectomy' I cam up with this

http://www.harvardprostateknowledge.org/positive-surgical-margins-following-radical-prostatectomy

which helps inform my future plans. I will watch out for developments in research and in my own circumstances

User
Posted 01 May 2016 at 23:25

You haven't misunderstood, Luther. It is possible to have no extracapsular extension but a positive margin (the surgeon didn't quite get the whole gland - adjuvant RT probably), extracapsular extension with negative margin (it escaped but they think they got it all), no extension and negative margin (happy days) or extension and positive margin (straight into adjuvant treatment)

I guess extension with negative margin is the most difficult - it is a gambler's choice. John waited, as did Bazza - gamble didn't pay off. But for others, it turned out okay.

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

User
Posted 02 May 2016 at 11:06

Hi, Chris.
Thanks for your post - it is on the more encouraging side. (I am reconciled to hearing the less encouraging news and views too, everyone.)
The course of events for you doesn't seem to suggest you should have done anything other than what you have done in following the advice given to you.
All of what happens to us with this PCa is so random!
The advice from clinicians comes from probabilities. It is no more and no less than the chances of the various risks and benefits of all the possible courses of action including no action ...
Another thing I keep being reminded of is the fact that as soon as each of us makes a choice to venture down one fork in the road as opposed to the other(s) we lose the possibility of ever knowing where the other choices would have lead us.
Good luck with getting the stricture opened up.

Henry

User
Posted 02 May 2016 at 11:36

I was a little simplistic CC - the apex is most common place for a positive margin that doesn't cause future problems, and one margin is less likely to lead on to recurrence than multiple margins. Your specialist looked at your pathology and felt that while you are more likely to have a recurrence, it was worth a 'wait and see'. Clearly, that was right for you because you are still undetectable and you are happy. John's situation was similar except his numbers started to climb (earlier than yours did) and when the urologist began to say 'it's time to rethink' John could not engage with that.

Henry, I am sorry if my post was less than encouraging - I thought you had confused extra-cap and positive margin 😕 It is my biggest flaw so I will butt out in future.

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

User
Posted 02 May 2016 at 13:30

Hi Henry I had positive margin at apex /base and was offered adjuvant R/T wait and see or go on the trial you mentioned , after some soul seeking and advice my brother who is a pharmacist at a hospital he asked which was best, the advice was to have adjuvant rt as they thought it had the edge at the moment so my o/h decided prevention is better than cure so i went down this route at the time my  psa was undetectable which it still is . all the best Andy

Edited by member 02 May 2016 at 13:34  | Reason: Not specified

User
Posted 02 May 2016 at 15:46

When i got my post op pathology...the urologist mentioned the RADICALS trial..i think he was duty bound to as he also said would you want treatment you may never need. But me being me decided to meet with the oncologist anyway for her perspective. She explained about the trial but agreed to see what the PSA was like a few months down the line. As said earlier it started to creep up but was still under 0.1..my oncologist felt early intervention was the best option...i didnt hesitate.

Maybe its worth having a chat with the oncologist.

Unfortunately not all posts are encouraging, but the sharing of experience and information on this forum is invaluable

Bri

Edited by member 02 May 2016 at 15:48  | Reason: Not specified

Show Most Thanked Posts
User
Posted 28 Apr 2016 at 19:40

Hi Henry
Seems like you are happy and that is half the fight really. You have sort of the same mind-set as me. Unfortunate that there may be spread , but hey let's face it you have the luxury of being undetectable and can keep an eye on it. If it moves you can wait till almost 0.2 before deciding on RT or not. That could be years. If EF hasn't returned then you might go for it. If you are potent again you can make a choice. I'm glad you have that choice Henry. You're lucky. Well lucky in that you're undetectable. Best wishes
Chris

User
Posted 28 Apr 2016 at 20:22

Hi Henry

Your histology and follow up PSA sound much the same as mine, and reading your post, we seem to have reacted to it in a similar fashion, and with the same self reassurance that  treatment was, in fact , needed.

If I'm honest, maybe I was not initially  as sanguine as you. I did have an attack of the collywobbles in the hours following the meeting, probably because I didn't calmly weigh thing up- I had the daft idea of a 500 mile drive down to the New Forest to buy a car straight after my meeting, preceded by insomnia, and followed by driving back the next day.

Interesting to hear you've acquired a Viberect. I received the prescription for the Erecaid esteem today (and after the advice on here, got the GP to add  a couple of packs of differing  tension rings to the scrip').  I'm waiting to see if  the pump is helpful before thinking about injections- which I would rather avoid- not from squeamishness about the procedure, more about the risk of developing Peyronie's ( I have yet to study the evidence on this).

Still no erections- maybe a 'mini-me' now and again, as a change from the 'shar-pei' lookalike, or the relevant bit of Michelangelo's David. I've just  laughed out loud at the notion that I've just  broadcast my new look to the internet! 

 

I shall raise a glass of alcoholic non-champagne to your good news!

User
Posted 28 Apr 2016 at 20:50

H

My stats are also similar to yours 4+3 T3a, also had 2mm positive margins. Two years ago today (28th April) with the help of my surgeon, his robot and a surgical team I said goodbye to my prostate and possibly my cancer.  I still feel a bit in limbo, the PSA started at 0.03 and is still low but slowly rising, 0.07 a month ago, so not sure if the more sensitive results are good or bad. My consultant has many patients who level off at 0.1. The Ed is improving with medication but not sure I will ever achieve pre op status.

All the best with your recovery.

Thanks Chris

 

 

Edited by member 28 Apr 2016 at 20:50  | Reason: Not specified

User
Posted 28 Apr 2016 at 21:00

Hi Henry,

I suspect the trial you speak of is the RADICALS trial?

Pre op this was offered to me as a potential route to take,  depending on my post op histology.

Fortunately for me, my histology results proved to be better than expected ( pT2c )  and so the 'Trial' was never mentioned again.

Were surgical margins negative?


I can relate to how you were feeling when told that further treatment will not be required at present.

Best wishes for your continued recovery

Luther

User
Posted 28 Apr 2016 at 22:10

Thanks, Guys.
Luther my margin was positive in a 3mm bit as I understand it.
Henry

User
Posted 29 Apr 2016 at 00:06

Surely they would be pushing you towards adjuvant RT if the margin had been positive? Extra capsular extension with a negative margin I can see why you would opt for a wait & see approach; John waited for 2 years until it was absolutely obvious that further treatment was needed but I can't imagine that they would delay with a positive margin?

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

User
Posted 29 Apr 2016 at 19:52

Whilst i want to celebrate your good news i do agree with Lyn. If you have been told the margin was positive i would want to know my options

I had a focal breech also and my consultant told me i had a 30% chance of needing more treatment, where do they get their stats from??
I had the sensitive PSA tests and it started to rise so i, on the advice of the oncologist, opted for RT even though it was still effectively <0.1
My last PSA was 0.01 so think i made the right decision

My post isnt meant to p**s on your bonfire but it's about sharing experiences

Bri

User
Posted 29 Apr 2016 at 20:06

Maybe Henry is confusing extra capsular extension with a positive margin?

As I understand things it's possible for histology to come back as  T3a but with negative margins?

Perhaps someone could correct me if I have misunderstood this....

Luther

User
Posted 29 Apr 2016 at 22:11
I agree with Lyn.. I was clear after surgery but with a small focal margin so upgraded to T3a. I opted to wait before salvage RT and believe this cost me my life. I am now metastatic after having waited for a PSA rise before salvage RT and should have had, in hindsight, adjuvant soon after surgery. Do explore this with more than one consultant and think very carefully. No two cases of PCa are ever the same but if I had the chance over again, I would never have presumed that I was cured and never have waited to have SRT like I did. Good luck brother

Bazza

Edited by member 29 Apr 2016 at 22:12  | Reason: Not specified

User
Posted 30 Apr 2016 at 12:04

My histology seems much the same, at T3a with positive margin and Gleason 3+4 with 3 at the margin . I dont know if it is  a focal or widespread positive margin. My consultant gave me much the same future management options as Henry.

Googling 'positive margin prostatectomy' I cam up with this

http://www.harvardprostateknowledge.org/positive-surgical-margins-following-radical-prostatectomy

which helps inform my future plans. I will watch out for developments in research and in my own circumstances

User
Posted 01 May 2016 at 23:25

You haven't misunderstood, Luther. It is possible to have no extracapsular extension but a positive margin (the surgeon didn't quite get the whole gland - adjuvant RT probably), extracapsular extension with negative margin (it escaped but they think they got it all), no extension and negative margin (happy days) or extension and positive margin (straight into adjuvant treatment)

I guess extension with negative margin is the most difficult - it is a gambler's choice. John waited, as did Bazza - gamble didn't pay off. But for others, it turned out okay.

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

User
Posted 02 May 2016 at 09:06

Thanks for the comments, sharing of experience, gentle warnings and facts.
I will never bank on the cancer all being gone, and absolutely know there could be some there. This is true even if everything had looked intracapsular with shiny margins - it is all just probabilities. Nonetheless I am very pleased the news wasn't worse.
I will clarify with my CNS what the finding was re: capsule versus margin.
I do feel clear what the surgeon was advising and what my own preference is for the short term (no treatment for now and PSA and review appointment in 3 months). My OH and I definitely need a break from treatments that are so severe with regards to side effects, even if this only turns out to be a short respite ...
Henry

User
Posted 02 May 2016 at 10:39

Just to be clear Henry...i got my post op results in March and we decided four months later to go for the RT...

Bri

User
Posted 02 May 2016 at 10:46

I was happily going along thinking things were reasonably okay until this conversation popped up. I was told by phone "I had positive margins and a 30% chance of reoccurrence" or my take on it 70 % chance of no reoccurrence. When I looked into positive margins I came across lots of articles that suggested a positive margin does not always mean there is any cancer left in the body, to quote a line from one article,  "And, even if the surgical margins are positive, this does not necessarily mean that the cancer is left behind" .

While checking the post histology letter from my consultant today I read what it actually said.

"His specimen confirmed the presence of extra prostatic extension with a small positive margin of 2mm. The prostate contained Gleason 4+3 with a tertiary of Grade 5,

Although he does have some adverse pathology, I would recommend a watching brief .. If his PSA ever breached the threshold value of 0.1 then I would like to see him in clinic myself ."  Margin was apical 2mm  grade cT3a.

 I am now 2 years and 3 days post op and my PSA has slowly risen from 0.03 post op to 0.07 a few weeks ago, I have been told several times that the PSA may level off at 0.1.

Fortunately or perhaps unfortunately I have an appointment this week with the head urology consultant for my stricture problem so I can bring this up with him. (flow down to 6ml/sec again.)

What would determine why some guys have early RT, am I even heading for RT or should I have been in the " extension and positive margin (straight into adjuvant treatment) as Lyn,s post.

 

Thanks Chris

 

 

 

 

User
Posted 02 May 2016 at 11:06

Hi, Chris.
Thanks for your post - it is on the more encouraging side. (I am reconciled to hearing the less encouraging news and views too, everyone.)
The course of events for you doesn't seem to suggest you should have done anything other than what you have done in following the advice given to you.
All of what happens to us with this PCa is so random!
The advice from clinicians comes from probabilities. It is no more and no less than the chances of the various risks and benefits of all the possible courses of action including no action ...
Another thing I keep being reminded of is the fact that as soon as each of us makes a choice to venture down one fork in the road as opposed to the other(s) we lose the possibility of ever knowing where the other choices would have lead us.
Good luck with getting the stricture opened up.

Henry

User
Posted 02 May 2016 at 11:36

I was a little simplistic CC - the apex is most common place for a positive margin that doesn't cause future problems, and one margin is less likely to lead on to recurrence than multiple margins. Your specialist looked at your pathology and felt that while you are more likely to have a recurrence, it was worth a 'wait and see'. Clearly, that was right for you because you are still undetectable and you are happy. John's situation was similar except his numbers started to climb (earlier than yours did) and when the urologist began to say 'it's time to rethink' John could not engage with that.

Henry, I am sorry if my post was less than encouraging - I thought you had confused extra-cap and positive margin 😕 It is my biggest flaw so I will butt out in future.

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

User
Posted 02 May 2016 at 13:30

Hi Henry I had positive margin at apex /base and was offered adjuvant R/T wait and see or go on the trial you mentioned , after some soul seeking and advice my brother who is a pharmacist at a hospital he asked which was best, the advice was to have adjuvant rt as they thought it had the edge at the moment so my o/h decided prevention is better than cure so i went down this route at the time my  psa was undetectable which it still is . all the best Andy

Edited by member 02 May 2016 at 13:34  | Reason: Not specified

User
Posted 02 May 2016 at 15:46

When i got my post op pathology...the urologist mentioned the RADICALS trial..i think he was duty bound to as he also said would you want treatment you may never need. But me being me decided to meet with the oncologist anyway for her perspective. She explained about the trial but agreed to see what the PSA was like a few months down the line. As said earlier it started to creep up but was still under 0.1..my oncologist felt early intervention was the best option...i didnt hesitate.

Maybe its worth having a chat with the oncologist.

Unfortunately not all posts are encouraging, but the sharing of experience and information on this forum is invaluable

Bri

Edited by member 02 May 2016 at 15:48  | Reason: Not specified

 
Forum Jump  
Email this conversation Print this conversation

Join the online community now.

Click through to become a member and gain access to support, information and real time replies.




MenuTop ▲
©2024 Prostate Cancer UK