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What to ask when receiving biopsy results

User
Posted 23 Feb 2022 at 22:32

Hi, this is my first post. I’m 50 and had a transperineal biopsy. next Thursday I get the results and treatment options. There’s some good info on the PCUK website about what to ask but it seems like everyone on here has something useful to add. What are your top questions to ask in that call? 

User
Posted 24 Feb 2022 at 20:06

You will be advised of your Gleason score and ask if there’s evidence of perineural invasion (PNI) and also extra prostatic extension (EPE). Have you had an MRI or bone scan? ask about MDT outcome.
Best wishes.

User
Posted 24 Feb 2022 at 20:35

Try to get your full diagnosis written down, at least as far as they know it at that point, so you can go home and investigate treatments which are suitable. Regarding the bone scan too - don't be worried they think you might have bone mets, but many hospitals do this in any case except for lowest grade cancer which doesn't need treating.

The diagnosis will be the parameters:

Staging (such as T2aN0)

Gleason score (such as 3+4), and the proportion of the two numbers in the samples.

Position in prostate: near the edge? near the nerves (and how likely is nerve sparing - preserving erections?)

PIRADS (or Likert) score from MRI scan (although this isn't very useful anymore once you have the Gleason score). Prostate size might be interesting too, but also not very useful.

For prostatectomies, do they offer Retzius Sparing (gives faster continence recovery) or Neurosafe (safer nerve sparing where they might not otherwise risk it). (Most NHS hospitals don't offer either, but you can choose to have the procedure at any NHS hospital willing to take you.)

What radiotherapy options do they offer?
Being at the young age of 50, where you may have many years to live still, very long term side effects of radiotherapy might be a consideration where they wouldn't be with an older person, but that doesn't rule it out.

PNI = means the cancer was seen inside nerve sheaths inside the prostate (these are nothing to do with the erection nerves). This very slightly increases the chances that very tiny amounts of cancer may have got out of the prostate which are too small to find.

EPE = extra-prostatic extension - i.e. it's come out of the prostate, but only just. This will be encoded in the Staging as T3a or T3b.

Yes, there's not usually hurry to make a decision, unlike some other cancers.

Let's hope they come back and say you don't have cancer!

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User
Posted 24 Feb 2022 at 20:06

You will be advised of your Gleason score and ask if there’s evidence of perineural invasion (PNI) and also extra prostatic extension (EPE). Have you had an MRI or bone scan? ask about MDT outcome.
Best wishes.

User
Posted 24 Feb 2022 at 20:27

Thanks Lexi. Yes I had bone, CT, ultrasound, MRI and biopsy (house!) so am hoping for info on all those. Reading other posts, it sounds like I’ll have a bit of time to consider my options and talk to others for advice about which treatment option to choose. 

I hadn’t heard of PNI or EPE though, what are they?

many thanks

Nick

User
Posted 24 Feb 2022 at 20:35

Try to get your full diagnosis written down, at least as far as they know it at that point, so you can go home and investigate treatments which are suitable. Regarding the bone scan too - don't be worried they think you might have bone mets, but many hospitals do this in any case except for lowest grade cancer which doesn't need treating.

The diagnosis will be the parameters:

Staging (such as T2aN0)

Gleason score (such as 3+4), and the proportion of the two numbers in the samples.

Position in prostate: near the edge? near the nerves (and how likely is nerve sparing - preserving erections?)

PIRADS (or Likert) score from MRI scan (although this isn't very useful anymore once you have the Gleason score). Prostate size might be interesting too, but also not very useful.

For prostatectomies, do they offer Retzius Sparing (gives faster continence recovery) or Neurosafe (safer nerve sparing where they might not otherwise risk it). (Most NHS hospitals don't offer either, but you can choose to have the procedure at any NHS hospital willing to take you.)

What radiotherapy options do they offer?
Being at the young age of 50, where you may have many years to live still, very long term side effects of radiotherapy might be a consideration where they wouldn't be with an older person, but that doesn't rule it out.

PNI = means the cancer was seen inside nerve sheaths inside the prostate (these are nothing to do with the erection nerves). This very slightly increases the chances that very tiny amounts of cancer may have got out of the prostate which are too small to find.

EPE = extra-prostatic extension - i.e. it's come out of the prostate, but only just. This will be encoded in the Staging as T3a or T3b.

Yes, there's not usually hurry to make a decision, unlike some other cancers.

Let's hope they come back and say you don't have cancer!

User
Posted 24 Feb 2022 at 21:24

Andy, thanks. This is very helpful. your last thought is where I’m at right now but in case we’re both wrong, at least now I’m armed with more knowledge. 
As this call with the hospital gets nearer I’m finding it harder to concentrate on other things, but I guess that’s usual. 
thanks again

Nick

 

 

 
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