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Does histology regarding stage usually change after surgery.

User
Posted 16 Jun 2024 at 19:36

Hi there 

I have a question about histology following surgery! 
My husband Gleeson 9 stage 2b currently is due surgery on Tuesday RP

i have looked at some nonograms and felt alarmed at the high percentage it has given of increased stage percentages when  I put in my husbands stats. 

Has anyone had a RP where their initial diagnosis of stage grade etc has been correct or is it common for them to increase. 
I have been worried about the time it has taken from the beginning receiving an elevated PSA to surgery for this aggressive cancer and wonder if it will affect the histology to some degree. 
It will be almost 13 weeks 

thanks in advance 

User
Posted 21 Jun 2024 at 08:21
Hi Margot,

I understand some people actually go down. I have one friend for whom that was the case. He had been told he had Gleason 7 (3+4) but in fact was Gleason 6 (3+3) following the slice and dice.

I was diagnosed on 4th December of 2023. PSA: 2.65 Gleason 7 (4+3), T2a originally but found to be T2c after PSMA PET MRA, N0, M0.

Post PR (27.3.24) my histology confirmed my original diagnosis with negative margins and no additional findings from the surgical procedure. All seemed to have gone well. Only difference was the tumour itself was actually smaller than had been originally reported. I had nerves removed on the left side where the cancer was found in the lower left periphery but spared on the right side where there were only traces of cancer in the transition zone. I was largely continent from the get go and certainly totally at one month. That had been a major concern for me.

I actually got my histology report a day before the third week anniversary date of the operation and not at the follow-up meeting which was scheduled for eight weeks following my surgery. That I felt to be a boon towards my recovery given the positive nature of the results.

Hope this helps.

User
Posted 16 Jun 2024 at 23:06

Hello again Margot.

First of all I wish your husband the very best of luck on Tuesday. I will be thinking of you both.

Prior to surgery I was given as Gleason 8 (4+4) T3a. After surgery Gleason 9 (4+5) T3a. Apparently they said my Gleason may have increased because I was on Bical for 2 months prior to the op. I've never really understood this reasoning. 

Hopefully your hubby's surgery will be successful and the cancer, no matter what the Gleason score, will be removed.

 

User
Posted 17 Jun 2024 at 01:58
Prostate Cancer develops in different ways with individules and a final result can only be given after the Prostate is sliced in the lab and it can be seen whether all the cancer appears to be contained within the Prostate giving a grade varient of 2. There is no way of being sure of this before the Prostatectomy is undertaken and it can happen that staging and indeed gradings can be subsequently reassessed. In your shoes is doesent make a difference how the statistics vary, your concern is what will be seen in your husband's case. A patient has to make a treatment decision based on what is believed to be the case. It seems to me best to not start looking for what might turn out to be a more advanced staging at this late point, particularly if some uncertainty might rub off onto your husband.
Barry
User
Posted 17 Jun 2024 at 09:31
All of the diagnosis from scanning, biopsies etc is always going to be 'best guess' - in many cases it proves to be very accurate but it some cases, mine included, when it was sliced and examined on the lab bench, it isn't quite what we hoped for.

I don't know the percentages and the forum is probably skewed towards the bad news rather than the good news but as the medical profession use their tools every day, I suspect that they are fairly accurate overall.

User
Posted 17 Jun 2024 at 15:52
Thanks

Yes, all going pretty well so far with only minor tiredness (my wife says I'm milking that - she might have a point LOL) and the occasional hot flush from the HT.

:)

User
Posted 17 Jun 2024 at 19:29

We wives know you know 😜 

User
Posted 17 Jun 2024 at 20:06

Hi Margot,

I'm sorry that you find yourself here...

It's my understanding that it's not unusual for the Gleason Grade to be revised (either up or down) after surgery, when tissue samples are sent to the lab. for analysis.

In my own case, I was thought to be Gleason 7 (3+4), and Grade T2, but it turned our that I was Gleason 7 (4+3) with Grade T3a (the prostate having breached the capsule).

As for the 'delay' of 13 weeks that your husband has experienced from diagnosis to surgery, I don't think that will have made much difference, but other, more knowledgeable people on here may be able to advise you better on that issue.

Best wishes,

JedSee.

User
Posted 17 Jun 2024 at 20:18

I don't know where the figure comes from, but I have heard that the original diagnosis is changed in 40% of prostatectomies, most of which are upgrades, but a small number are downgrades.

I think this just emphasises how imprecise prostate cancer diagnosis still is, although undoubtedly much better than is was in the past. There are some treatments, such as focal therapies and active surveillance, where the diagnosis really does need to be accurate. (Focal therapy centres do sometimes repeat the imaging.)

User
Posted 18 Jun 2024 at 00:00

Margot 

Age 62 Diagnosed with prostate cancer December 18th 2013,PSA of 7.7 Gleason 4+3 T2 (at most)  N0 M0. Pre op PSA was 10.

 

Post op Gleason 4+3 cT3a NO MO. Histology extra prostatic extension, positive margins 30 percent chance of recurrence. The histology also said they found a small amount of Gleason 5.

 

I waited 4 months from diagnosis to surgery.

 

Thanks Chris 

User
Posted 18 Jun 2024 at 09:01
Hope all goes well today, definitely better out than in!
User
Posted 18 Jun 2024 at 10:22

Originally Posted by: Online Community Member
it makes me wonder if the wait you had made a difference. With my husband I could not get a clear indication as to how fast Gleeson 9 grows? 

Hi Margot. I was told that I was Gleason 8 (4+4) mid Covid restrictions. It was 6 months before I was operated on. The surgeon told me that  delays during Covid were lengthy but generally hadn't affected outcomes. 

Best of luck to you both today.

Edited by member 18 Jun 2024 at 10:28  | Reason: Additional text

User
Posted 18 Jun 2024 at 10:46

Margot, hope all goes well, I usually tell guys take it easy but keep mobile. Take care of yourself as well.

In hindsight I probably started with prostate issues when I was 50, I had terminal dribbling and didn't think to mention it to my GP. My GP missed a raised PSA of 6.9.when I was 59. I think those two events may have had more effect on my spread than my four months wait for the robot to be installed at our hospital. Back in those days the MRI was after the biopsy and I believe was looking at surrounding areas not the prostate.

I have had lots of treatments and have another scan on Monday to see what the next step is. I am still here and still moaning and dodging HT after 10 years. Hopefully your husband has many years in front of him. Sending hugs. 

Thanks Chris 

User
Posted 18 Jun 2024 at 23:19

Thanks for the update Margot. I'm so pleased that the op appears to have been successful. I hope that the histology is good.

I'm not medically qualified, but I believe I've read, that removing some nerve bundles to leave negative margins does happen. 

I know in my case the surgeon removed the seminal vesicles, 9 lymph nodes, and the op was non nerve sparing. I apparently ended up with negative margins post op.

The attached link although quite old, 2009, explains things well.

https://www.health.harvard.edu/blog/positive-surgical-margins-following-radical-prostatectomy-20090617171

I hope you both manage to sleep well tonight.

Edited by member 19 Jun 2024 at 07:36  | Reason: Add link

User
Posted 19 Jun 2024 at 08:21

Margot, good to hear things went well. As you probably know nerve bundles affect the ability to get natural erections, but better to lose the nerve bundles than leverage some cancer behind. I supposedly didn't have any nerves spared,but we have had lots of fun.

The surgeon cannot see individual cancer cells but when the prostate is sliced up and looked at under a microscope the may see if there was anything left behind. A recent trial may change that in the coming years.

Take care of each other, thanks Chris.

Added.Have a look at Lyn's post,it explains margins.

https://community.prostatecanceruk.org/posts/t29400-Staging-confusion-T2-or-T3

 

Edited by member 19 Jun 2024 at 08:27  | Reason: Not specified

User
Posted 19 Jun 2024 at 08:39
It is my understanding that when the surgeon refers to 'negative margins' it means that they believe that they have removed all of the cancer mass during the operation - whether that includes seminal vessels, nerve bundles, lymph nodes or just the prostate.

Later, when the prostate is examined, they will determine how far it had actually spread within the prostate but the 'negative margins' at this stage is exactly what you want to hear!

User
Posted 19 Jun 2024 at 08:41

I saw this on the site earlier this year:

Is it realistic to think not rushing into anything and taking a year and reevaluating where things are, or the Doctor's just going to focus on my one outlier of 4+4(only 8% tissue) and tell me I need to start treatment. The study I found reported in The Journal of Urology titled Most Gleason 8 Biopsies are downgraded at Prostatectomy - Does 4+4 =7.

Also study Urol Oncol. 2020 Titled Should all prostate needle biopsy Gleason score 4+4=8 prostate cancers be high risk? Found after prostatectomy that if patients had 3 predictive factors that associated with downgrading in almost

60% of patients that had 4+4. One, that < or = 2

biopsy cores of 4+4. Two, < or = 50% maximal

tumor involvement of the cores demonstrating 4+4, and third the presence of a Gleason pattern 3 in separate biopsy cores. The probability of downgrading increased when combinations of these factors were present. I fit that in my pathology report so l am hesitant to run off screaming I have Gleason 8. It was only in one core minimally and I

User
Posted 22 Jun 2024 at 08:30

Hi  Margot.

There seems to be quite a variation in recovering from the op. My goal was to get back to the pub ASAP, and I did it in four days. Others on here have not been so fortunate. 

You'll find that many have suffered pains in the area of surgery, it's quite a big op. Then you'll see there are differences in  incontinence and erectile dysfunction issues.

The main thing is he's eventually had the op and hopefully on his way to a cancer free life.

User
Posted 22 Jun 2024 at 08:55

In my own case - post surgery - I was primarily fine.  The only discomforting element were the surgical clips.  I wrote a note on these boards and one correspondent suggested that I had perhaps been too active.  That was far - in reality - from the case.  It was merely the clips which became progressively troublesome as the skin surrounding them loosened.  (I don't know if this is the same situation with your husband.)  I put dressings back to cover them (stopping them from being pulled by clothing/bed sheets) and was really not troubled after that point.  The awareness made ALL the difference.  Still, mine was simply surface discomfort.  I didn't - and still don't - have any major concern with anything approaching internal pain.  

Don't know if this relates to your husband's case - but certainly I send every good wish for the best possible recovery going in his regard.  

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User
Posted 16 Jun 2024 at 23:06

Hello again Margot.

First of all I wish your husband the very best of luck on Tuesday. I will be thinking of you both.

Prior to surgery I was given as Gleason 8 (4+4) T3a. After surgery Gleason 9 (4+5) T3a. Apparently they said my Gleason may have increased because I was on Bical for 2 months prior to the op. I've never really understood this reasoning. 

Hopefully your hubby's surgery will be successful and the cancer, no matter what the Gleason score, will be removed.

 

User
Posted 17 Jun 2024 at 01:58
Prostate Cancer develops in different ways with individules and a final result can only be given after the Prostate is sliced in the lab and it can be seen whether all the cancer appears to be contained within the Prostate giving a grade varient of 2. There is no way of being sure of this before the Prostatectomy is undertaken and it can happen that staging and indeed gradings can be subsequently reassessed. In your shoes is doesent make a difference how the statistics vary, your concern is what will be seen in your husband's case. A patient has to make a treatment decision based on what is believed to be the case. It seems to me best to not start looking for what might turn out to be a more advanced staging at this late point, particularly if some uncertainty might rub off onto your husband.
Barry
User
Posted 17 Jun 2024 at 04:26

Thanks Adrian

I

User
Posted 17 Jun 2024 at 04:30

Hi Barry

Thanks for the replying to me. 

Its not that I’m so much doubting the treatment decision more that I’m more surprised what the nonogram ‘predicts’ 

It’s made me wonder why so many men would have (especially)  EC when it didn’t appear on the MRI ie is G9 so fast growing that it’s happened in the time MRI to surgery? 

M

User
Posted 17 Jun 2024 at 09:31
All of the diagnosis from scanning, biopsies etc is always going to be 'best guess' - in many cases it proves to be very accurate but it some cases, mine included, when it was sliced and examined on the lab bench, it isn't quite what we hoped for.

I don't know the percentages and the forum is probably skewed towards the bad news rather than the good news but as the medical profession use their tools every day, I suspect that they are fairly accurate overall.

User
Posted 17 Jun 2024 at 11:54

Thanks for reply Steve , I’ve read your profile and you certainly had an interesting time! 
I hope your RT is going well and you are felling as ok as can hope for? 

M

User
Posted 17 Jun 2024 at 15:52
Thanks

Yes, all going pretty well so far with only minor tiredness (my wife says I'm milking that - she might have a point LOL) and the occasional hot flush from the HT.

:)

User
Posted 17 Jun 2024 at 19:29

We wives know you know 😜 

User
Posted 17 Jun 2024 at 20:06

Hi Margot,

I'm sorry that you find yourself here...

It's my understanding that it's not unusual for the Gleason Grade to be revised (either up or down) after surgery, when tissue samples are sent to the lab. for analysis.

In my own case, I was thought to be Gleason 7 (3+4), and Grade T2, but it turned our that I was Gleason 7 (4+3) with Grade T3a (the prostate having breached the capsule).

As for the 'delay' of 13 weeks that your husband has experienced from diagnosis to surgery, I don't think that will have made much difference, but other, more knowledgeable people on here may be able to advise you better on that issue.

Best wishes,

JedSee.

User
Posted 17 Jun 2024 at 20:18

I don't know where the figure comes from, but I have heard that the original diagnosis is changed in 40% of prostatectomies, most of which are upgrades, but a small number are downgrades.

I think this just emphasises how imprecise prostate cancer diagnosis still is, although undoubtedly much better than is was in the past. There are some treatments, such as focal therapies and active surveillance, where the diagnosis really does need to be accurate. (Focal therapy centres do sometimes repeat the imaging.)

User
Posted 17 Jun 2024 at 20:33

Hi 

thanks for the reply, it’s the monogram that has shocked me that when I put in my husbands stats it gave a likelyhood of over 80% that there would be EC. It just seems so high presumably as it’s Gleeson9. Just seems odd that the MPRI would be wrong in saying no EC in that percentage? 

M

User
Posted 17 Jun 2024 at 20:35

Hi 

thanks for the reply 

Yes it does seem that the MPRI can under stage in many cases from what I’m reading about a Gleeson 9 anyway! 

Well it surgery day for my husband tomorrow so at least something is happening at last!

M

 

User
Posted 18 Jun 2024 at 00:00

Margot 

Age 62 Diagnosed with prostate cancer December 18th 2013,PSA of 7.7 Gleason 4+3 T2 (at most)  N0 M0. Pre op PSA was 10.

 

Post op Gleason 4+3 cT3a NO MO. Histology extra prostatic extension, positive margins 30 percent chance of recurrence. The histology also said they found a small amount of Gleason 5.

 

I waited 4 months from diagnosis to surgery.

 

Thanks Chris 

User
Posted 18 Jun 2024 at 09:01
Hope all goes well today, definitely better out than in!
User
Posted 18 Jun 2024 at 10:00

Hi Chris

Thanks for reply

it makes me wonder if the wait you had made a difference. With my husband I could not get a clear indication as to how fast Gleeson 9 grows? 
It’s very upsetting waiting when you know you have aggressive disease and makes you ponder on the campaign to get tested earlier. 

Anyway he’s in surgery as we speak so 🙄

User
Posted 18 Jun 2024 at 10:22

Originally Posted by: Online Community Member
it makes me wonder if the wait you had made a difference. With my husband I could not get a clear indication as to how fast Gleeson 9 grows? 

Hi Margot. I was told that I was Gleason 8 (4+4) mid Covid restrictions. It was 6 months before I was operated on. The surgeon told me that  delays during Covid were lengthy but generally hadn't affected outcomes. 

Best of luck to you both today.

Edited by member 18 Jun 2024 at 10:28  | Reason: Additional text

User
Posted 18 Jun 2024 at 10:44
I'm not sure I would classify PCa as 'aggressive' - I understand to be one of the slower growing ones and delays of even months in treatment has very little impact on survivability. From my first diagnosis, through scans, biopsy, more scans, interviews and planning was almost a year and looking back on the first scan results, nothing obvious had changed.

In my case, I just left the initial PSA test too late but that was Covid restrictions for you :)

User
Posted 18 Jun 2024 at 10:46

Margot, hope all goes well, I usually tell guys take it easy but keep mobile. Take care of yourself as well.

In hindsight I probably started with prostate issues when I was 50, I had terminal dribbling and didn't think to mention it to my GP. My GP missed a raised PSA of 6.9.when I was 59. I think those two events may have had more effect on my spread than my four months wait for the robot to be installed at our hospital. Back in those days the MRI was after the biopsy and I believe was looking at surrounding areas not the prostate.

I have had lots of treatments and have another scan on Monday to see what the next step is. I am still here and still moaning and dodging HT after 10 years. Hopefully your husband has many years in front of him. Sending hugs. 

Thanks Chris 

User
Posted 18 Jun 2024 at 22:15

Thanks for all the good wishes everyone! 
Surgery over my husband is sore but doing well! 

The surgeon said he has taken the nerve bundle on the left and my husband thinks he said something about getting a negative margin? 
Does this sound like the reason he would have taken these nerves and would it be likely that it hadn’t been contained? 
Surgeon then said all looks contained but will need to wait for final histology? Patient 

I’m a bit confused by this? 
Relieved it’s over for him

User
Posted 18 Jun 2024 at 23:19

Thanks for the update Margot. I'm so pleased that the op appears to have been successful. I hope that the histology is good.

I'm not medically qualified, but I believe I've read, that removing some nerve bundles to leave negative margins does happen. 

I know in my case the surgeon removed the seminal vesicles, 9 lymph nodes, and the op was non nerve sparing. I apparently ended up with negative margins post op.

The attached link although quite old, 2009, explains things well.

https://www.health.harvard.edu/blog/positive-surgical-margins-following-radical-prostatectomy-20090617171

I hope you both manage to sleep well tonight.

Edited by member 19 Jun 2024 at 07:36  | Reason: Add link

User
Posted 19 Jun 2024 at 08:21

Margot, good to hear things went well. As you probably know nerve bundles affect the ability to get natural erections, but better to lose the nerve bundles than leverage some cancer behind. I supposedly didn't have any nerves spared,but we have had lots of fun.

The surgeon cannot see individual cancer cells but when the prostate is sliced up and looked at under a microscope the may see if there was anything left behind. A recent trial may change that in the coming years.

Take care of each other, thanks Chris.

Added.Have a look at Lyn's post,it explains margins.

https://community.prostatecanceruk.org/posts/t29400-Staging-confusion-T2-or-T3

 

Edited by member 19 Jun 2024 at 08:27  | Reason: Not specified

User
Posted 19 Jun 2024 at 08:39
It is my understanding that when the surgeon refers to 'negative margins' it means that they believe that they have removed all of the cancer mass during the operation - whether that includes seminal vessels, nerve bundles, lymph nodes or just the prostate.

Later, when the prostate is examined, they will determine how far it had actually spread within the prostate but the 'negative margins' at this stage is exactly what you want to hear!

User
Posted 19 Jun 2024 at 08:41

I saw this on the site earlier this year:

Is it realistic to think not rushing into anything and taking a year and reevaluating where things are, or the Doctor's just going to focus on my one outlier of 4+4(only 8% tissue) and tell me I need to start treatment. The study I found reported in The Journal of Urology titled Most Gleason 8 Biopsies are downgraded at Prostatectomy - Does 4+4 =7.

Also study Urol Oncol. 2020 Titled Should all prostate needle biopsy Gleason score 4+4=8 prostate cancers be high risk? Found after prostatectomy that if patients had 3 predictive factors that associated with downgrading in almost

60% of patients that had 4+4. One, that < or = 2

biopsy cores of 4+4. Two, < or = 50% maximal

tumor involvement of the cores demonstrating 4+4, and third the presence of a Gleason pattern 3 in separate biopsy cores. The probability of downgrading increased when combinations of these factors were present. I fit that in my pathology report so l am hesitant to run off screaming I have Gleason 8. It was only in one core minimally and I

User
Posted 21 Jun 2024 at 08:21
Hi Margot,

I understand some people actually go down. I have one friend for whom that was the case. He had been told he had Gleason 7 (3+4) but in fact was Gleason 6 (3+3) following the slice and dice.

I was diagnosed on 4th December of 2023. PSA: 2.65 Gleason 7 (4+3), T2a originally but found to be T2c after PSMA PET MRA, N0, M0.

Post PR (27.3.24) my histology confirmed my original diagnosis with negative margins and no additional findings from the surgical procedure. All seemed to have gone well. Only difference was the tumour itself was actually smaller than had been originally reported. I had nerves removed on the left side where the cancer was found in the lower left periphery but spared on the right side where there were only traces of cancer in the transition zone. I was largely continent from the get go and certainly totally at one month. That had been a major concern for me.

I actually got my histology report a day before the third week anniversary date of the operation and not at the follow-up meeting which was scheduled for eight weeks following my surgery. That I felt to be a boon towards my recovery given the positive nature of the results.

Hope this helps.

User
Posted 22 Jun 2024 at 08:14

Hi 

Thanks so much for the reply! 
My husband is now recovering from the surgery he’s felt quite sore and off but I’m hoping this will soon go away! 
He to had the nerves taken on the left side of the prostate where he had one tumour thought to be 16mm before surgery 

So now it’s the anxious wait foe histology, he is Gleeson 9 so I hope it remains the same but also have a worry it won’t! However the surgeon did say the prostate looked intact from his eye but we have to wait to see! 
Can I ask how you felt after surgery and how long before you wasn’t so uncomfortable? 

User
Posted 22 Jun 2024 at 08:30

Hi  Margot.

There seems to be quite a variation in recovering from the op. My goal was to get back to the pub ASAP, and I did it in four days. Others on here have not been so fortunate. 

You'll find that many have suffered pains in the area of surgery, it's quite a big op. Then you'll see there are differences in  incontinence and erectile dysfunction issues.

The main thing is he's eventually had the op and hopefully on his way to a cancer free life.

User
Posted 22 Jun 2024 at 08:55

In my own case - post surgery - I was primarily fine.  The only discomforting element were the surgical clips.  I wrote a note on these boards and one correspondent suggested that I had perhaps been too active.  That was far - in reality - from the case.  It was merely the clips which became progressively troublesome as the skin surrounding them loosened.  (I don't know if this is the same situation with your husband.)  I put dressings back to cover them (stopping them from being pulled by clothing/bed sheets) and was really not troubled after that point.  The awareness made ALL the difference.  Still, mine was simply surface discomfort.  I didn't - and still don't - have any major concern with anything approaching internal pain.  

Don't know if this relates to your husband's case - but certainly I send every good wish for the best possible recovery going in his regard.  

 
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