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How much should I be told

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User
Posted 06 Jan 2020 at 17:13

I am having some anxiety issues as unsure of how much i should know, or be told, at this stage. I am 69 and 18moths ago my PSA was 2.3, i requested another in November and it was 4.1. Referred and had an ultrasound and a retest of PSA which was then 3.6. Urologist very upbeat and said nothing on Ultrasound and would do MRI but didn't expect anything serious. Turns out there are two 'abnormal areas' and so i am having a transperineal biopsy under local.  he still seemed very positive as my PSA was not that high. However when I asked the PIRADS score he said it was 4 and that meant 80% chance of being clinically significant. 


I feel a little uneasy and quite worried by the situation and unsure if the MRI can show spread and if the Ultrasound would have shown anything and how definite any of this is. I also read that there is some evidence that Ca Prostate with low PSA can be more aggressive.


As I have other long term health issues i am more anxious about any treatments, especially as several friends have had quite severe effects from the treatments they have had.


Any help, or advice would be welcome, and should perhaps the consultant have given more info such as size volume etc? 


 


 


 

User
Posted 06 Jan 2020 at 19:00

Hi Nomis, generally speaking, doctors these days tell their patients everything there is to know, sometimes a bit too much! The fact is that at the moment, there probably isn't much more he can tell you - it seems that the MRI was an mpMRI which is the gold standard for diagnosis but all it can see is whether areas are suspicious; it can't always tell the difference between inflammation, bruising and cancer. They wont know for sure until they do a biopsy. As the consultant has told you, PIRADS 4 means it is highly likely to be cancer but we had someone on here with a PIRADS 5 (significant cancer) but the reading of the scans was wrong and he eventually got the all clear.


It is true that some prostate cancers don't give off much PSA but these are very rare. Your PSA doesn't indicate the seriousness of the problem, it simply indicates that you need further assessment.

Edited by member 06 Jan 2020 at 23:49  | Reason: typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 08 Jan 2020 at 18:46
I found it on a par with the injection you have at the dentist when you have a tooth filled, discomfort-wise. It's the same drug, in fact. The anticipation of the biopsy was far worse than the event!

Cheers,

Chris
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User
Posted 06 Jan 2020 at 19:00

Hi Nomis, generally speaking, doctors these days tell their patients everything there is to know, sometimes a bit too much! The fact is that at the moment, there probably isn't much more he can tell you - it seems that the MRI was an mpMRI which is the gold standard for diagnosis but all it can see is whether areas are suspicious; it can't always tell the difference between inflammation, bruising and cancer. They wont know for sure until they do a biopsy. As the consultant has told you, PIRADS 4 means it is highly likely to be cancer but we had someone on here with a PIRADS 5 (significant cancer) but the reading of the scans was wrong and he eventually got the all clear.


It is true that some prostate cancers don't give off much PSA but these are very rare. Your PSA doesn't indicate the seriousness of the problem, it simply indicates that you need further assessment.

Edited by member 06 Jan 2020 at 23:49  | Reason: typo

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard
User
Posted 06 Jan 2020 at 20:17

Hi Simon, Lyn is right the doctors tell you all you need to know, they won't be hiding anything.


My MRI revealed areas of suspicion, and also identified a breach of the capsule, so they may not know from an MRI if it is cancer, but they can tell if there are areas of suspicion outside the prostate and I think the mri can detect if lymph nodes are involved. So if nothing has been said about lymph nodes or areas of suspicion outside, I doubt there is anything to say.


Things like prostate volume are interesting to geeks like me (and Andy62), but would just be glossed over by your consultant at this stage.


All doctors know you can ask for your medical records so they won't hide anything from you, if they omit anything in a meeting it is probably because it is not important.


It would be silly for me to say "don't worry" anyone going for a cancer test will be worried. But I'm feeling silly and based on the evidence so far, I'll say "don't worry". 


 

Dave

User
Posted 06 Jan 2020 at 22:23

Thanks Dave. I guess I am also a bit of a geek and having been disabled since 5 and a period of working within a med school I am someone who likes to know a lot as I have had far too many experiences of having to sort my own care and tests to catch issues early. 


I take the point though that some consultants can have tunnel vision and so ignore what’s not relevant to them at the time! 


Simon 


 

User
Posted 08 Jan 2020 at 17:27

So I am having a transperenial template biopsy under local next week.Curious how unpleasant the local is if anyone has had that, or maybe its individual ?  Obviously glad its happening sooner rather than later and yet quite anxious of the outcome and waiting for the results. I will as suggested try to write down what i want to know and maybe make a point that i am a person who feels better knowing as much as possible. I guess this is a journey but i hope one that i can manage without it taking over my life.

Edited by member 08 Jan 2020 at 17:28  | Reason: Not specified

User
Posted 08 Jan 2020 at 18:46
I found it on a par with the injection you have at the dentist when you have a tooth filled, discomfort-wise. It's the same drug, in fact. The anticipation of the biopsy was far worse than the event!

Cheers,

Chris
 
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