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Postive Margins

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User
Posted 01 Nov 2022 at 19:13

I Joined in june having been recently diagnosed . I had prostatectomy on 2nd september , all went well , 

recovered quite quickly now back at work , playing golf , very little incontinence maybe 2 tablespoons a day. 

I count myself quite lucky. I visit weekly to check on how people cope and manage thier symptoms/diagnosis.

I had my PSA done which was 00.01 found that out 4 hours after they took the test spoke to my GP who logged on to the hospital system and told me the reading. Follow up consultation today however , i was told i had positive margins on Histology report. Whilst i am aware of what this means , has anyone had the same?. i believe in postive mindset and all that so i am quite hopeful. I have follow up appointment on 21st november to talk about incontinence /ED and such. what time is an appropiate timescale to try anything other than Tadafil?. 

I know its very very early and dont expect miracles but just wondered at what point did you friendly people look at alternatives and act upon them. Has anyone tried fluxactive.?

 

many TIA colin 

 

User
Posted 02 Nov 2022 at 16:14

Colin , I had positive margins and extraprostatic extension. My cancer was predicted as contained but staging was upgraded after the prostate was examined. I got 23 months under the so called undetectable level. 

At three years post surgery I had Salvage treatment, that didn't work for me, but technology has advanced in the last eight years, so goalposts have moved. 

I had another 5 sessions of SABR treatment a few weeks ago and await the outcome, again a few years ago I would have just gone into HT.

Still here and still moaning, for me PSA anxiety stopped some time ago , it is what it is , worrying won't reduce it. Hope all goes well for you.

Thanks Chris 

 

Edited by member 02 Nov 2022 at 16:25  | Reason: Addressed to wrong person , apologies

User
Posted 02 Nov 2022 at 10:24

Hi Colin, 

I had my RALP in November 2019. My histology showed a positive margin and I had the best part of two years of undetectable PSA results before it started increasing.

This July, I had 20 fractions of SRT to the prostate bed and I found it manageable. As for the outcome, I went for a PSA test yesterday so I'll phone the nurse tomorrow for the results before my oncology appointment next week. 

As for alternatives to tadalafil go, I went for injections which worked for me. It took the best part of a year to organise due to covid shenanigans but well worth it. I find tadalafil works quite well now, but didn't seem to do much in the months post op so I'd say keep trying as it can be a painfully slow process. 

Hopefully others will add their thoughts here.

Good luck. 

Kev.

User
Posted 02 Nov 2022 at 11:32

Hi Colin/Kev,

Similar situation but a good few months on. Now at 16m post-op and last two PSAs have been 0.04 after 3 on the bounce undetectable <0.01. Kind of waiting for the inevitable next steps. Check out my Bio for more info.
I am not aware yet of anyone having RALP; Gl.7(4+3); contained but with positive margins and then not having a rise in PSA at some point in their future. Maybe someone on here can correct me…

User
Posted 02 Nov 2022 at 11:49
Positive margins mean that all the cancer has not been removed, so yes, recurrence will be inevitable. SRT is highly effective, though, so although having two lots of treatment is not what anyone would choose, it's nothing to get too stressed about.

Chris

User
Posted 02 Nov 2022 at 11:55
Cheshire Chris got to disagree a positive margin does not mean a recurrence is inevitable. In fact the stats for positive margins are only marginally worse than negative margins.

All depends on the extent of the margin and the likelihood that the surgeons "hot knife" may have vaporised anything left behind.

User
Posted 02 Nov 2022 at 11:58

Also disagree. Positive margins can in principle be benign or malignant tissue - or so we are told.

User
Posted 02 Nov 2022 at 14:50
When the prostate is removed, it is encased in ink or wax and then sliced very thinly. A positive margin means that when a slice was analysed under a microscope, the cancer was touching the wax. It is possible to have a positive margin but no cancer left behind in the patient - as franci says, the ultimate edge of the cancer may have been just outside the section that has been encased in wax but may have been eradicated during the cutting process. There are two causes of a positive margin - either the cancer had extended outside the prostate gland (in which case, a bit may or may not have been left behind) or a bit of the prostate has been left behind (surgeon error) - these are referred to as an exterior positive margin or an interior (or focal) positive margin. An exterior positive margin is more likely to require adjuvant or salvage treatment; an interior positive margin may not lead to recurrence because the tiny bit of prostate that has been left behind may have been cancer-free. Overall, about 50% of men with a positive margin go on to need further treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Nov 2022 at 15:33

Thx Lyn… Agree - and it is clear that histology is a difficult analysis, however the analysts are hopefully expert. Perhaps the report templates/authors are not so aware of the anxiety they cause…
For example my report simply refers to one circumferential <3mm margin as ‘posteriorly and laterally intraprostatic’ which could be interpreted (I guess) as ‘internal, round the back’; and one apical <3mm with no further definition.
When I tried to explore this more with my surgeon (during my brief 5min phonecall and only follow-up!) he fairly quickly got quite short and shut the conversation down with ‘assume you are cured until PSA tells us otherwise’. I get that ‘sentiment’ but some more thorough explanation would have been nice.

Another point is that if positive margins are present and so difficult to judge, how can they confidently state ‘confined to prostate’ and ‘no extraprostatic extension’? If there’s a positive margin then those conclusions are surely a little premature?

User
Posted 02 Nov 2022 at 16:35

Chris ,

 

Thanks for your imput and wishes , my is extended outside the prostate as lyn helpfully explained , originally before the removal the consultant believed it was contained within , but unfortunately not. I am due another PSA in January 

so guess just have to crack on with things, remain postive and cross my fingers and toes , i understand this is a journey very many of us are on. Wishing you well .

Thanks Colin (YOLO)

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User
Posted 02 Nov 2022 at 10:24

Hi Colin, 

I had my RALP in November 2019. My histology showed a positive margin and I had the best part of two years of undetectable PSA results before it started increasing.

This July, I had 20 fractions of SRT to the prostate bed and I found it manageable. As for the outcome, I went for a PSA test yesterday so I'll phone the nurse tomorrow for the results before my oncology appointment next week. 

As for alternatives to tadalafil go, I went for injections which worked for me. It took the best part of a year to organise due to covid shenanigans but well worth it. I find tadalafil works quite well now, but didn't seem to do much in the months post op so I'd say keep trying as it can be a painfully slow process. 

Hopefully others will add their thoughts here.

Good luck. 

Kev.

User
Posted 02 Nov 2022 at 11:32

Hi Colin/Kev,

Similar situation but a good few months on. Now at 16m post-op and last two PSAs have been 0.04 after 3 on the bounce undetectable <0.01. Kind of waiting for the inevitable next steps. Check out my Bio for more info.
I am not aware yet of anyone having RALP; Gl.7(4+3); contained but with positive margins and then not having a rise in PSA at some point in their future. Maybe someone on here can correct me…

User
Posted 02 Nov 2022 at 11:49
Positive margins mean that all the cancer has not been removed, so yes, recurrence will be inevitable. SRT is highly effective, though, so although having two lots of treatment is not what anyone would choose, it's nothing to get too stressed about.

Chris

User
Posted 02 Nov 2022 at 11:55
Cheshire Chris got to disagree a positive margin does not mean a recurrence is inevitable. In fact the stats for positive margins are only marginally worse than negative margins.

All depends on the extent of the margin and the likelihood that the surgeons "hot knife" may have vaporised anything left behind.

User
Posted 02 Nov 2022 at 11:58

Also disagree. Positive margins can in principle be benign or malignant tissue - or so we are told.

User
Posted 02 Nov 2022 at 14:50
When the prostate is removed, it is encased in ink or wax and then sliced very thinly. A positive margin means that when a slice was analysed under a microscope, the cancer was touching the wax. It is possible to have a positive margin but no cancer left behind in the patient - as franci says, the ultimate edge of the cancer may have been just outside the section that has been encased in wax but may have been eradicated during the cutting process. There are two causes of a positive margin - either the cancer had extended outside the prostate gland (in which case, a bit may or may not have been left behind) or a bit of the prostate has been left behind (surgeon error) - these are referred to as an exterior positive margin or an interior (or focal) positive margin. An exterior positive margin is more likely to require adjuvant or salvage treatment; an interior positive margin may not lead to recurrence because the tiny bit of prostate that has been left behind may have been cancer-free. Overall, about 50% of men with a positive margin go on to need further treatment.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 02 Nov 2022 at 15:33

Thx Lyn… Agree - and it is clear that histology is a difficult analysis, however the analysts are hopefully expert. Perhaps the report templates/authors are not so aware of the anxiety they cause…
For example my report simply refers to one circumferential <3mm margin as ‘posteriorly and laterally intraprostatic’ which could be interpreted (I guess) as ‘internal, round the back’; and one apical <3mm with no further definition.
When I tried to explore this more with my surgeon (during my brief 5min phonecall and only follow-up!) he fairly quickly got quite short and shut the conversation down with ‘assume you are cured until PSA tells us otherwise’. I get that ‘sentiment’ but some more thorough explanation would have been nice.

Another point is that if positive margins are present and so difficult to judge, how can they confidently state ‘confined to prostate’ and ‘no extraprostatic extension’? If there’s a positive margin then those conclusions are surely a little premature?

User
Posted 02 Nov 2022 at 16:14

Colin , I had positive margins and extraprostatic extension. My cancer was predicted as contained but staging was upgraded after the prostate was examined. I got 23 months under the so called undetectable level. 

At three years post surgery I had Salvage treatment, that didn't work for me, but technology has advanced in the last eight years, so goalposts have moved. 

I had another 5 sessions of SABR treatment a few weeks ago and await the outcome, again a few years ago I would have just gone into HT.

Still here and still moaning, for me PSA anxiety stopped some time ago , it is what it is , worrying won't reduce it. Hope all goes well for you.

Thanks Chris 

 

Edited by member 02 Nov 2022 at 16:25  | Reason: Addressed to wrong person , apologies

User
Posted 02 Nov 2022 at 16:19

Kev ,

Wishing you a great PSA result 

thank you for your input

thanks to everyone else who contributed .

 

Colin. YOLO ( as my daughter says )

Edited by member 02 Nov 2022 at 16:21  | Reason: Not specified

User
Posted 02 Nov 2022 at 16:35

Chris ,

 

Thanks for your imput and wishes , my is extended outside the prostate as lyn helpfully explained , originally before the removal the consultant believed it was contained within , but unfortunately not. I am due another PSA in January 

so guess just have to crack on with things, remain postive and cross my fingers and toes , i understand this is a journey very many of us are on. Wishing you well .

Thanks Colin (YOLO)

User
Posted 03 Nov 2022 at 16:47

Originally Posted by: Online Community Member
When the prostate is removed, it is encased in ink or wax and then sliced very thinly. A positive margin means that when a slice was analysed under a microscope, the cancer was touching the wax. It is possible to have a positive margin but no cancer left behind in the patient - as franci says, the ultimate edge of the cancer may have been just outside the section that has been encased in wax but may have been eradicated during the cutting process. There are two causes of a positive margin - either the cancer had extended outside the prostate gland (in which case, a bit may or may not have been left behind) or a bit of the prostate has been left behind (surgeon error) - these are referred to as an exterior positive margin or an interior (or focal) positive margin. An exterior positive margin is more likely to require adjuvant or salvage treatment; an interior positive margin may not lead to recurrence because the tiny bit of prostate that has been left behind may have been cancer-free. Overall, about 50% of men with a positive margin go on to need further treatment.

This is such a brilliant reply, concise, easy to understand and lifts right off the page. It's the kind of reply that probably helps a thousand men in less than a thousand hours, as how best to compute and therefore what to expect after surgery.

Thank you Lyn.

Jamie.

User
Posted 03 Nov 2022 at 20:40

Originally Posted by: Online Community Member
Another point is that if positive margins are present and so difficult to judge, how can they confidently state ‘confined to prostate’ and ‘no extraprostatic extension’? If there’s a positive margin then those conclusions are surely a little premature?

 

No, because your specified positive margin was intraprostatic (aka internal or focal) - the surgeon cut too finely and didn't actually remove the whole prostate (probably in an attempt to save the nerve bundles in that area). But in the petrie dish, they could perhaps see that the cancer was all quite central and well contained ... it hadn't got anywhere near the edge of the gland. Also, in your case, both positive margins were less than 3mm which significantly reduces the risk of recurrence (refer back to franci's comment about the edge being fried with the surgeon's hot knife).

The positive margin at the apex is very common; it is the most difficult bit to remove cleanly and therefore usually focal / internal rather than external. Positive margins at the apex appear have little relevance to recurrence.

It is no great surprise that the surgeon was touchy about the report - the lab is reporting that the surgeon made a little bit of an error. It isn't always the fault of the surgeon; I can think of a couple of men on here in the past who were advised that nerve-sparing was not advisable who then either a) pushed the surgeon to try anyway or b) went to a different surgeon and went on to have a recurrence. In those cases, the surgeon may leave a little bit of cancer behind due to being overconfident about the possibility of nerve-sparing (ego) or feeling pressurised to save the nerves (lack of experience).    

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

 
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