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3 months post RP appointment

User
Posted 13 Sep 2023 at 23:44

Well it's been 3 months since the RP and tomorrow, Thursday I see the consultant who will hopefully have the results of the biopsy on my prostate and my PSA from blood taken earlier this week. I'm scared and anxious but trying not to expect too much and I guess I'm trying to temper my expectations. My last PSA before the RP was 43 so I imagine 3 months should be enough for it to show negligible traces if I've dodged a bullet but as I say I'm trying not to go in and end up being disappointed. There is without doubt a long road ahead with anxious waits and possible treatment options.

Just wondering what can I expect as regards treatment and care? I know this depends on current PSA and biopsy results but I imagine at the very least quarterly PSA tests to keep an eye on things. Are there any questions I should be asking my Urologist at this stage?

User
Posted 14 Sep 2023 at 01:58

PSA has a half life of just under a week. One week after you RP your PSA was 21.5, two weeks after it was 11 by week 12 it will be about 0.01. Other organs produce PSA so it may be higher than 0.01. If there is a < (less than) sign it is a good result. If there isn't a less than, but it is below 0.09 that is also good.

Over the next few years NEVER accept the results of a PSA test without seeing the numbers. Words like "good" or "normal" only apply to men pre treatment, you must monitor the actual numbers.

Dave

User
Posted 27 Oct 2023 at 10:04
Hi Gerry,

Sorry to hear the unwelcome news.

I think once there's evidence of it breaking through the capsule (T3) then it's considered high risk but I suspect you're also right that your PSA level would contribute to the categorisation.

Intermediate risk is I think when the cancer is contained within the capsule, gleason is 7 or less and PSA is less than 20.

I don't know what happens now but it may be worth a new thread here to ask for advice - have you got a follow up appointment as a result of the histology? Do they consider immediately treating the prostate bed with RT in this situation? I honestly don't know but I'm sure there will people here who do.

Best wishes, Paul

User
Posted 27 Oct 2023 at 11:11
Yes, the 'magic' number is 0.2 before they start to take an interest in further treatment.
User
Posted 27 Oct 2023 at 11:23
Ok so be careful if you have a positive margin and a rising PSA post OP there is probably no point waiting until 0.2 for salvage therapy. The positive margin means they know they left something behind, a rising PSA means whatever they left is viable and growing.

The dilemma really comes from a rising PSA and negative margins because you don't know where it is.

User
Posted 31 Oct 2023 at 07:32

My 3mm positive margin was staged at 3. Overall the staging of the prostate it's self remained the same, 3+4.

User
Posted 15 Sep 2023 at 20:54

Brilliant news Gerry, here's to the future! 🥂

User
Posted 24 Oct 2023 at 13:02

Well finally got my biopsy results in the mail today and it's brought it all back as I had put PC to the back of my mind and had actually forgotten about it and was getting on with things. I guess we've all been there and you know what I'm talking about. BTW I had the RP back in June.

Such a coincidence how only yesterday I saw on the BBC News about the prostate cancer drug Abiraterone and today I get the not so good news. Anyways from the results of the biopsy they've now upgraded me from Gleason 3+4 to 4+3 and in the letter they confirmed it as high risk prostate cancer. Described as positive surgical margin (anterior) and it had gone through the capsule. 

Final Histology Gleason 4+3, pT3a with a positive surgical margin (anterior), Post Op PSA <0.01

One question I have is why is it regarded as high risk. I thought high risk was when one of the gleason figures was 5 (3 being low and 4 being medium). I can only assume it may be based on my very high PSA readings which at their peak reached 69 pre surgery.

Does anyone know what the 'p' in pT3a is?

Edited by member 24 Oct 2023 at 14:37  | Reason: Not specified

User
Posted 24 Oct 2023 at 14:22

I think the 'p' stands for pathological, as the prostate is sliced for analysis after the surgery.

So I was T2b pre surgery,  but increased to pT2c after the prostate was examined. 

P.

User
Posted 27 Oct 2023 at 10:13

Originally Posted by: Online Community Member

I will be checking the actual levels from my quarterly tests over the next 2 years and the Urologists stated they'd be getting me back in if there were 2 consecutive rises or it reached 0.02. I've also been prescribed Viagra as my sexual function is zero.

Are you sure of your figures. I've had RARP early this year and have had three, 3 monthly PSA checks at 0.02, 0.05 and 0.02. My consultant stated that the critical figure for possible signs of recurrence is 0.2 not 0.02

Apparently all of my post op levels are classed as undetectable. The slight jump from 0.02 to 0.05, was probably due to results being analysed at different labs.

I hate all the letters and figures they use for cancer staging and PSA levels. I was useless at maths at school.

Adrian.

 

 

Edited by member 27 Oct 2023 at 10:46  | Reason: Not specified

User
Posted 28 Oct 2023 at 21:03

Originally Posted by: Online Community Member

Does the positive margin always mean something has been left behind??

 

No, it doesn't. There are two types of positive margin - interior & exterior. An exterior positive margin means that, when they inspected the bits of prostate under a microscope, the cancer was touching the wax edge (they encase the prostate in wax and then slice it up to look at it). It might be that it was a tiny piece and that was cut or burnt during the operation anyway. The risk of recurrence is no higher than for men who had negative margins. An interior positive margin is usually surgeon error - it means that the surgeon left part of the prostate behind by mistake. If the bit left behind was clear of cancer, there is no increased risk of recurrence. If the bit left behind was cancerous, recurrence is more likely. 

Depending on what kind of positive margin it is, some urologists will refer the patient to an oncologist for adjuvant RT. If the positive margin is thought to be cancer-free and the first post-op PSA reading is okay, many urologists & oncologists will advise waiting to see whether a problem does develop and then opting for salvage RT if needed. My husband had exterior positive margins and waited until his PSA rose over 0.1 before he had salvage RT - that was 2 years post-op. 

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

User
Posted 29 Oct 2023 at 21:27
As I understand it, the prostate is surrounded by the nerve sheath and if there is nerve sparing then the surgeon tries to separate the nerve sheath from the prostate and if the cancer has broken through the surface of the gland it may be left behind in the nerve sheath. If they know beforehand that the margin is unclear then they make no attempt at separating the nerve sheath.
User
Posted 30 Oct 2023 at 21:43
For what it is worth, I hadn't come across the terms interior and exterior prostate margin either.

My understanding pretty much accords with Steve86's. The prostate is surrounded by a very thin boundary layer, outside which is a neurovascular layer (also pretty thin) i.e.containing a network of fine blood vessels and nerves. Among those nerves are the ones supplying the penis.

When "sparing nerves" the surgeon tries to leave the neurovascular layer behind when removing the prostate underneath. There is a risk when doing so that the cut won't be neatly outside the prostate boundary, so that wouldn't be done if the original biopsy indicated there was cancerous tissue just under the boundary. However the biopsy is just a collection of samples at a few points, there can be cancer just below the surface where no sample was originally taken which is only seen during pathology on the removed prostate.

The pathology on the removed prostate after surgery should show the boundary layer all the way round - if there is a bit of boundary missing it is a positive margin. The implication is that a tiny bit of boundary and the prostate tissue next to it is still in the patient and a future risk, more so if there turned out to be cancerous cells around that region.

I think what LynEyre is saying is that there is a possibility that when the prostate if prepared for pathology (in a wax block from which microscope sections can be cut) some of the prostate edge hasn't been preserved and can't be examined. In that case they can't tell technically whether the removed prostate includes the thin boundary layer all the way round, which means there is a bit where they can't tell whether there is a risk of prostate tissue left behind or not.

User
Posted 30 Oct 2023 at 23:31

Search for intraprostatic, either on here or on Google. There are numerous references.

Thanks Chris 

Edited by member 30 Oct 2023 at 23:34  | Reason: Not specified

User
Posted 31 Oct 2023 at 07:21

Been following this thread with interest as OH was told he had a positive margin by the surgeon. Just checking the most recent letter it states ‘ with a 1.2 MM left apical anterior margin involvement with Gleason 3+3 disease’. Any thoughts? Presume with a 3+ 3 it’s less worrying than his overall Gleason 4 + 5? But it’s the first I’ve seen of a staging of a positive margin. 
thanks Kate 

User
Posted 01 Nov 2023 at 13:12

Originally Posted by: Online Community Member
Surely if the prostate is removed it's gone completely! Can they make a mistake like that?

Yes, it has happened to men on here although fortunately,  it is less common than an exterior positive margin. As it is often down to surgeon error, it has to be recorded as a medical incident. 

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

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User
Posted 14 Sep 2023 at 00:27

You should get 3 monthly PSA tests, for at least a year, 6 months there after and then yearly. Ask the consultant what their preferred testing routine is.

If you install the NHS app you will be able to see your medical records and get the result of the test quicker. Better than going through a GP receptionist.

There is a lot of depends at this point. But if you PSA result remains low i.e < 0.1 then depending on your trust  you may get little if any contact with them there after. Book the blood tests yourself, monitor the results yourself, take any other issues such as ED to your GP who may refer you to the appropriate clinic. If you need further treatment then you can expect them to monitor you more closely.

User
Posted 14 Sep 2023 at 01:58

PSA has a half life of just under a week. One week after you RP your PSA was 21.5, two weeks after it was 11 by week 12 it will be about 0.01. Other organs produce PSA so it may be higher than 0.01. If there is a < (less than) sign it is a good result. If there isn't a less than, but it is below 0.09 that is also good.

Over the next few years NEVER accept the results of a PSA test without seeing the numbers. Words like "good" or "normal" only apply to men pre treatment, you must monitor the actual numbers.

Dave

User
Posted 14 Sep 2023 at 21:51

Hi Gerry, hope it all went well 🤞 - have been in the same anxious position myself today!

User
Posted 15 Sep 2023 at 17:28

Thank you Stan and others for your replies. 

I must admit I hadn't allowed myself to expect a positive outcome so when the surgeon nonchalantly just read out that my PSA level was undetectable I almost missed it. When I got home I felt so tired but relieved. At the very worst  I've bought myself time and can make decisions about my future without worrying too much if I'll be around, at least for now.

I will be checking the actual levels from my quarterly tests over the next 2 years and the Urologists stated they'd be getting me back in if there were 2 consecutive rises or it reached 0.02. I've also been prescribed Viagra as my sexual function is zero.

User
Posted 15 Sep 2023 at 20:54

Brilliant news Gerry, here's to the future! 🥂

User
Posted 16 Sep 2023 at 12:09

Thank you Stan very much appreciated :)

User
Posted 24 Oct 2023 at 13:02

Well finally got my biopsy results in the mail today and it's brought it all back as I had put PC to the back of my mind and had actually forgotten about it and was getting on with things. I guess we've all been there and you know what I'm talking about. BTW I had the RP back in June.

Such a coincidence how only yesterday I saw on the BBC News about the prostate cancer drug Abiraterone and today I get the not so good news. Anyways from the results of the biopsy they've now upgraded me from Gleason 3+4 to 4+3 and in the letter they confirmed it as high risk prostate cancer. Described as positive surgical margin (anterior) and it had gone through the capsule. 

Final Histology Gleason 4+3, pT3a with a positive surgical margin (anterior), Post Op PSA <0.01

One question I have is why is it regarded as high risk. I thought high risk was when one of the gleason figures was 5 (3 being low and 4 being medium). I can only assume it may be based on my very high PSA readings which at their peak reached 69 pre surgery.

Does anyone know what the 'p' in pT3a is?

Edited by member 24 Oct 2023 at 14:37  | Reason: Not specified

User
Posted 24 Oct 2023 at 14:22

I think the 'p' stands for pathological, as the prostate is sliced for analysis after the surgery.

So I was T2b pre surgery,  but increased to pT2c after the prostate was examined. 

P.

User
Posted 27 Oct 2023 at 01:38
One question I have is why is it regarded as high risk. I thought high risk was when one of the gleason figures was 5 (3 being low and 4 being medium). I can only assume it may be based on my very high PSA readings which at their peak reached 69 pre surgery.

Would anyone be able to answer the above question for me please?

User
Posted 27 Oct 2023 at 10:04
Hi Gerry,

Sorry to hear the unwelcome news.

I think once there's evidence of it breaking through the capsule (T3) then it's considered high risk but I suspect you're also right that your PSA level would contribute to the categorisation.

Intermediate risk is I think when the cancer is contained within the capsule, gleason is 7 or less and PSA is less than 20.

I don't know what happens now but it may be worth a new thread here to ask for advice - have you got a follow up appointment as a result of the histology? Do they consider immediately treating the prostate bed with RT in this situation? I honestly don't know but I'm sure there will people here who do.

Best wishes, Paul

User
Posted 27 Oct 2023 at 10:13

Originally Posted by: Online Community Member

I will be checking the actual levels from my quarterly tests over the next 2 years and the Urologists stated they'd be getting me back in if there were 2 consecutive rises or it reached 0.02. I've also been prescribed Viagra as my sexual function is zero.

Are you sure of your figures. I've had RARP early this year and have had three, 3 monthly PSA checks at 0.02, 0.05 and 0.02. My consultant stated that the critical figure for possible signs of recurrence is 0.2 not 0.02

Apparently all of my post op levels are classed as undetectable. The slight jump from 0.02 to 0.05, was probably due to results being analysed at different labs.

I hate all the letters and figures they use for cancer staging and PSA levels. I was useless at maths at school.

Adrian.

 

 

Edited by member 27 Oct 2023 at 10:46  | Reason: Not specified

User
Posted 27 Oct 2023 at 11:11
Yes, the 'magic' number is 0.2 before they start to take an interest in further treatment.
User
Posted 27 Oct 2023 at 11:23
Ok so be careful if you have a positive margin and a rising PSA post OP there is probably no point waiting until 0.2 for salvage therapy. The positive margin means they know they left something behind, a rising PSA means whatever they left is viable and growing.

The dilemma really comes from a rising PSA and negative margins because you don't know where it is.

User
Posted 28 Oct 2023 at 17:11

Originally Posted by: Online Community Member
Ok so be careful if you have a positive margin and a rising PSA post OP there is probably no point waiting until 0.2 for salvage therapy. The positive margin means they know they left something behind, a rising PSA means whatever they left is viable and growing.

The dilemma really comes from a rising PSA and negative margins because you don't know where it is.

Does the positive margin always mean something has been left behind??

User
Posted 28 Oct 2023 at 21:03

Originally Posted by: Online Community Member

Does the positive margin always mean something has been left behind??

 

No, it doesn't. There are two types of positive margin - interior & exterior. An exterior positive margin means that, when they inspected the bits of prostate under a microscope, the cancer was touching the wax edge (they encase the prostate in wax and then slice it up to look at it). It might be that it was a tiny piece and that was cut or burnt during the operation anyway. The risk of recurrence is no higher than for men who had negative margins. An interior positive margin is usually surgeon error - it means that the surgeon left part of the prostate behind by mistake. If the bit left behind was clear of cancer, there is no increased risk of recurrence. If the bit left behind was cancerous, recurrence is more likely. 

Depending on what kind of positive margin it is, some urologists will refer the patient to an oncologist for adjuvant RT. If the positive margin is thought to be cancer-free and the first post-op PSA reading is okay, many urologists & oncologists will advise waiting to see whether a problem does develop and then opting for salvage RT if needed. My husband had exterior positive margins and waited until his PSA rose over 0.1 before he had salvage RT - that was 2 years post-op. 

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

User
Posted 29 Oct 2023 at 20:26

Originally Posted by: Online Community Member

Originally Posted by: Online Community Member

Does the positive margin always mean something has been left behind??

 

No, it doesn't. There are two types of positive margin - interior & exterior. An exterior positive margin means that, when they inspected the bits of prostate under a microscope, the cancer was touching the wax edge (they encase the prostate in wax and then slice it up to look at it). It might be that it was a tiny piece and that was cut or burnt during the operation anyway. The risk of recurrence is no higher than for men who had negative margins. An interior positive margin is usually surgeon error - it means that the surgeon left part of the prostate behind by mistake. If the bit left behind was clear of cancer, there is no increased risk of recurrence. If the bit left behind was cancerous, recurrence is more likely. 

Depending on what kind of positive margin it is, some urologists will refer the patient to an oncologist for adjuvant RT. If the positive margin is thought to be cancer-free and the first post-op PSA reading is okay, many urologists & oncologists will advise waiting to see whether a problem does develop and then opting for salvage RT if needed. My husband had exterior positive margins and waited until his PSA rose over 0.1 before he had salvage RT - that was 2 years post-op. 

 

Oh now I'm confused. In particular this...

An interior positive margin is usually surgeon error - it means that the surgeon left part of the prostate behind by mistake.

Surely if the prostate is removed it's gone completely! Can they make a mistake like that?

I've tried Googling interior & exterior positive margin and can't find anything. I do need to confirm with the Urologist if there was cancer found on the outside i.e. on the prostate shell as my current understanding is the prostate lining wasn't clear. I didn't ask at our last meeting as I'd assumed if there was it would have been mentioned. Gleason score was upgraded from 3+4 to 4+3 and tumour was anterior:

Final Histology Gleason 4+3, pT3a with a positive surgical margin (anterior), Post Op PSA <0.01

So what they found in the prostate was classed as high risk prostate cancer!

User
Posted 29 Oct 2023 at 21:27
As I understand it, the prostate is surrounded by the nerve sheath and if there is nerve sparing then the surgeon tries to separate the nerve sheath from the prostate and if the cancer has broken through the surface of the gland it may be left behind in the nerve sheath. If they know beforehand that the margin is unclear then they make no attempt at separating the nerve sheath.
User
Posted 30 Oct 2023 at 21:43
For what it is worth, I hadn't come across the terms interior and exterior prostate margin either.

My understanding pretty much accords with Steve86's. The prostate is surrounded by a very thin boundary layer, outside which is a neurovascular layer (also pretty thin) i.e.containing a network of fine blood vessels and nerves. Among those nerves are the ones supplying the penis.

When "sparing nerves" the surgeon tries to leave the neurovascular layer behind when removing the prostate underneath. There is a risk when doing so that the cut won't be neatly outside the prostate boundary, so that wouldn't be done if the original biopsy indicated there was cancerous tissue just under the boundary. However the biopsy is just a collection of samples at a few points, there can be cancer just below the surface where no sample was originally taken which is only seen during pathology on the removed prostate.

The pathology on the removed prostate after surgery should show the boundary layer all the way round - if there is a bit of boundary missing it is a positive margin. The implication is that a tiny bit of boundary and the prostate tissue next to it is still in the patient and a future risk, more so if there turned out to be cancerous cells around that region.

I think what LynEyre is saying is that there is a possibility that when the prostate if prepared for pathology (in a wax block from which microscope sections can be cut) some of the prostate edge hasn't been preserved and can't be examined. In that case they can't tell technically whether the removed prostate includes the thin boundary layer all the way round, which means there is a bit where they can't tell whether there is a risk of prostate tissue left behind or not.

User
Posted 30 Oct 2023 at 23:31

Search for intraprostatic, either on here or on Google. There are numerous references.

Thanks Chris 

Edited by member 30 Oct 2023 at 23:34  | Reason: Not specified

User
Posted 31 Oct 2023 at 07:21

Been following this thread with interest as OH was told he had a positive margin by the surgeon. Just checking the most recent letter it states ‘ with a 1.2 MM left apical anterior margin involvement with Gleason 3+3 disease’. Any thoughts? Presume with a 3+ 3 it’s less worrying than his overall Gleason 4 + 5? But it’s the first I’ve seen of a staging of a positive margin. 
thanks Kate 

User
Posted 31 Oct 2023 at 07:32

My 3mm positive margin was staged at 3. Overall the staging of the prostate it's self remained the same, 3+4.

User
Posted 01 Nov 2023 at 13:12

Originally Posted by: Online Community Member
Surely if the prostate is removed it's gone completely! Can they make a mistake like that?

Yes, it has happened to men on here although fortunately,  it is less common than an exterior positive margin. As it is often down to surgeon error, it has to be recorded as a medical incident. 

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

 
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