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The cells left behind

User
Posted 17 Jul 2018 at 09:33

My husband had a prostectamy last month and we were told last week that what we thought was all within the prostate gland itself, wasn't and there is still an area of T3a cells (2mm x under 1mm) which they didn't take out.

Any one else had this?

We have no idea how to react to this - we thought it was all going to be 'easy' and removed and life would carry on. I know this was a bit silly, but my husband is really struggling with accepting that it wasn't all removed.

Is this acceptable? (that they missed a bit)

Should we be panicking?

We know we need to wait for it to settle down and then do a PSA in a few months, but getting the right sense of perspective is so hard.

 

Thank you.

User
Posted 18 Jul 2018 at 19:59

Originally Posted by: Online Community Member

No, a post-op PSA of 0.2 or above is the accepted indicator of remaining cancer / biochemical recurrence (or 3 successive rises above 0.1) .... 0.05 is NOT a clear indicator that the op has failed.

Latest research and frankly common sense should say in a man with no prostate a rising PSA above 0.05 is cause for concern and an indicator that further treatment should be considered will / be required.

 

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User
Posted 17 Jul 2018 at 14:34
It’s actually quite common to have positive margins where they didn’t quite get it all. That’s why many men now have RT immediately following surgery ( adjuvant ) or when there are slight rises in psa over a period of time ( salvage RT ).

I have positive margins on my bladder neck. Read my profile. But my psa is so bad ( now 38 ) that they insist I have spread elsewhere ( I had 5 lymph cancerous ). So I’ve not had RT. I hate what happened to me at 48 and am not going through it again. It’s taken me 3 yrs to recover yet still mentally tattered. But if they use the word cure then you could go for it. But likely permanent ED , chance of Lymphodema , bladder and bowel issues , risk of bladder bowel cancer etc. The stats say that SRT is only 50% successful but does slow things down a bit. I just want quality now and will take what comes my way

If life gives you lemons , then make lemonade

User
Posted 17 Jul 2018 at 15:18
Hello,

I had similar after my RP, some of the cells were left in the pelvic area , please read my profile. I had Radiotheraphy in April this year, had blood test since & don't need to see Oncologist until November next.

Regards

James

User
Posted 17 Jul 2018 at 16:23
Hi I was supposedly low risk and only a T2 - even considered AS but because of family history I decided to have the op this decision was helped by the consultant telling me the lesion was quite near the capsule, as post op pathology proved it was actually a T3a so I made the correct decision. My margins were clear but I still have residual PSA and it is the post op PSA reading combined with the Gleaston score and the extent of the margin that will feed the debate about further radiotherapy. High Gleason (4+3 or above) large positive margin and or residual PSA would indicate RT is required.

Positive margins do not always cause trouble as the cells left behind may have been killed by the trauma of the operation unfortunately only time will tell. Fingers crossed for an undetectable PSA (make sure it's the supersensitive assay) at 3 to 6 months post op..

User
Posted 17 Jul 2018 at 16:49

Originally Posted by: Online Community Member
Have Fingers crossed for an undetectable PSA (make sure it's the supersensitive assay) at 3 to 6 months post op.

Where can I find such accuracy in a PSA test? My recent post-op PSA came up on my iPad screen as 0.1, when further investigation involving a biochemist at one of the biggest teaching hospitals in Britain (University Hospital Coventry & Warwickshire) resulted in <0.1 - undetectable. She said that’s the most accurate they can be....but there may be a more accurate machine in Birmingham.....

The Patient Access EMIS doesn’t allow a < character symbol on their web page. I have emailed them about this discrepancy, but to date, no reply.

User
Posted 17 Jul 2018 at 17:12
Wolverhampton New Cross Hospital do them (that's where I go)

The supersensitive is not without its critics (me for one!) but it can provide real reassurance if you have positive margins AND a low G score.

If you have a high G and positive margins then the pecieved wisdom would say ajuvant RT is best regardless of PSA score but again nothing is fixed and there are no garuantees... That's the good AND bad news with PC!! So many choices..

User
Posted 17 Jul 2018 at 18:43

When I had the op in July 2015 I was upgraded from T2c to T3a. Unfortunately my PSA started to rise rapidly around a year after surgery (the previous tests were <0.1 I.e. undetectable). Recurrence was found in MRI and PET scans in the prostate bed and in a seminal vesicle remnant left behind.

I think the anatomy means surgical margins are very tight so sometimes not everything can be removed.

That was what I was told when I queried why part of the seminal vesicle had been left behind.

I have since had salvage radiotherapy (oncologis quoted a 40% chance of success) and have been on hormone therapy since the end of 2016. My last PSA was undetectable next one due 1st August So squeaky bum time again until I get the result. 

Keeping an eye on PSA for a few months is sensible but I would have a discussion with the medical team about adjuvant radiotherapy should the need arise.

I was devastated when my PSA started to rise so I am not surprised he is struggling to come to terms with his situation given that we all go in to this operation hoping that will be it once and for all.

Best wishes,

Ido4

 

User
Posted 17 Jul 2018 at 19:18

Hi, Please don't think your question is silly.  When you get these pieces of information it's hard to take it in. 

If it was me I'd now want to know how they know that, was it that diameter on the outer edge of the margin for example, although I'm not sure what difference it makes if it's a fact.   

I'd also be wanting to know what further treatment they're offering and when.   Is another MRI or other test offered?  What is the next psa test going to mean even if it's very low or it's higher. 

As others have said hormones and radiotherapy seem an option and if it was me I'd be asking for the plan for when it starts and be wanting it to start.

We're all different in how we react so you might have other ideas as will others, and there might be other options.   

I'd think it's good to have had the operation and now to get those remnants sorted.

Regards
Peter

User
Posted 17 Jul 2018 at 22:30
It is a shame if your OH didn’t fully understand that the operation isn’t guaranteed to get it all - they can only give a best prediction prior to surgery of whether the cancer is contained. It isn’t that they have left behind a bit of the gland; more that they now know the cancer had already escaped out of the gland. My husband had a similar situation in that the cancer had gone to his bladder so they did a bit of reconstruction and then we all waited ... in our case, it was 2 years before my OH felt able to acknowledge that further treatment was needed and he eventually had salvage RT. 7 years later he remains well and with a PSA of around 0.1 so waiting to recover from the op before having salvage treatment worked out okay. Sometimes it is clear very early that RT is going to be needed and the man just wants to get on with it. See what the next PSA test shows.
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jul 2018 at 09:51

Originally Posted by: Online Community Member
It is a shame if your OH didn’t fully understand that the operation isn’t guaranteed to get it all - they can only give a best prediction prior to surgery of whether the cancer is contained. It isn’t that they have left behind a bit of the gland; more that they now know the cancer had already escaped out of the gland. My husband had a similar situation in that the cancer had gone to his bladder so they did a bit of reconstruction and then we all waited ... in our case, it was 2 years before my OH felt able to acknowledge that further treatment was needed and he eventually had salvage RT. 7 years later he remains well and with a PSA of around 0.1 so waiting to recover from the op before having salvage treatment worked out okay. Sometimes it is clear very early that RT is going to be needed and the man just wants to get on with it. See what the next PSA test shows. [/quote

Just because it has escaped from the gland and become a T3 doesn't mean it's metastatic and negative margins are an important factor but not indicative of a complete failure, otherwise anyone with positive margins would get RT straight away.

A rising post OP PSA greater than 0.05   is a clear indicator that the op has failed and further action is required. fingers crossed your PSA will be low and stay low..A useful nomogram for post RP outcomes is here:

]https://www.mskcc.org/nomograms/prostate/post_op

 

 

Edited by member 18 Jul 2018 at 09:55  | Reason: Not specified

User
Posted 18 Jul 2018 at 17:58

No, a post-op PSA of 0.2 or above is the accepted indicator of remaining cancer / biochemical recurrence (or 3 successive rises above 0.1) .... 0.05 is NOT a clear indicator that the op has failed.

Edited by member 18 Jul 2018 at 18:03  | Reason: Not specified

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

User
Posted 18 Jul 2018 at 18:02
In this case, they don't seem to be talking simply about a positive margin - the writer says that a sizeable tumour has been left behind. If that is the case, you would expect adjuvant RT to be offered so it seems a bit odd at the minute
"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 18 Jul 2018 at 19:59

Originally Posted by: Online Community Member

No, a post-op PSA of 0.2 or above is the accepted indicator of remaining cancer / biochemical recurrence (or 3 successive rises above 0.1) .... 0.05 is NOT a clear indicator that the op has failed.

Latest research and frankly common sense should say in a man with no prostate a rising PSA above 0.05 is cause for concern and an indicator that further treatment should be considered will / be required.

 

User
Posted 18 Jul 2018 at 20:30
Most hospitals aren’t carrying out super-sensitive tests anymore as they can be quite unreliable. A psa of 0.1 is now considered as undetectable. If you took a mans sample and it was 0.05 , but retested it at 20 hospitals , the results could range from 0.02 to 0.15 for example , depending on each machine’s calibration and SQC — statistical quality control. There has to be a standard taken somewhere and agreed upon and then used to calibrate the machines.

Lyn is quite correct in her input. 0.2 is the benchmark for starting SRT or if three consecutive rises over 9 months above 0.1. I guess if you are tested at one specific hospital and your test went from 0.02 to 0.03 to 0.05 then they may agree to forward you for SRT. A close friend went from 0.08 to 0.11 over a year and was pushed for SRT. He declined and a year on and he is still 0.11 and very grateful he didn’t go for it !

If life gives you lemons , then make lemonade

User
Posted 18 Jul 2018 at 21:15
Thanks CJ - dad had one sample tested twice on the same day and got 2 results - 0.30 and 0.32 Machine error and / or tolerance range?

Our urologist had been telling us for a while that usPSA is unreliable, as do many of the pathology experts now which is why more and more hospitals/ cancer centres of excellence have withdrawn them. It was a bit stressful when John first got moved from 3dp to 1dp but you soon get used to it and it certainly reduces PSA anxiety

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

 
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