PSA numbers

Hi Loobjo (interesting name!) hello and welcome although I'm sure you'd rather not be here!

Another partner here and like you we are waiting but we have the biopsy results, had a bone scan and now my husband is waiting to get an oncology appointment. We have asked our MacMillan team to check that this is in the pipeline for us after a few blips with admin last week which has delayed things a bit. I would 100% encourage you to ring the Macmillan nurses wherever your husband is having treatment about absolutely anything related to his situation as they are stars.

My understanding of PSA numbers is that they are an important indication of there being a problem initially and then that treatment is working (so my husband's hormone therapy has caused his PSA to drop significantly) or that in the future there might be a new problem as a PSA is rising. But to get a true diagnosis medics need things like MRIs and bone scans to actually see what is happening in someone's body. The results  you are referring to re how aggressive the cancer is would come from his biopsy results which indicate the type of cancer cells found, whether it has spread outside the prostate and whether it's in the lymph nodes etc and this is where you might hear words like 'aggressive' or 'advanced.' (If I've explained that inadequately then someone will post more helpfully for you ) And even then further tests might be needed - so we know my husband's PC has spread into his pelvis but his bone scan results will show if it's anywhere else in his bones.

However, what I can add is to say please don't panic at scary sounding words like aggressive and advanced, even the word 'incurable' if it comes up,  because although of course that diagnosis is more serious than a cancer that is very small and only in the prostate itself, they  are all treatable and there are many treatment options if one isn't working or worked at first but has stopped working, plus others in the pipeline. As many have said on here, most men die 'with PC, not OF it.' So we are quite accepting that my husband might have spots of PC all through his skeleton and although of course it will be music to our ears if it hasn't, we're not terrified of what we might be told. That is very different from just before Christmas when we were first told it was cancer and went into a state of pure stress and panic.

This forum plus calls to the macMillan nurse and a consultant with a lovely reassuring manner is definitely the main reason for our calm plus absolutely everyone we've told about the diagnosis knowing men with PC who have had it for a matter of years and are still here!!

Hi L

So the answer is , not necessarily.

Some aggressive PCs secrete very little PSA so can be low but aggressive and spread although this is fairly rare.

Generally the higher  the PSA the more it could of spread or with a large tumour but not necessarily aggressive.

If u post some stats that could help with any further advice although u may want to wait for the biopsy results 

Best wishes 

Steve 

Hi Loobjo , a rising PSA is indicative of a problem but beyond that the PSA doesn’t tell you much.  I have a friend who is on a curable path and his PSA was over 2,000 at the start.  The biopsy will give an indication of how aggressive it is, so no point in trying to guess.  Please come back with your results and we can help you through it.  David

Hello Loobjo 

Everyone is correct - PSA is an enzyme secreted by the prostate and the higher the number the more the risk you have prostate cancer - but it's a rule of thumb. The biopsy and MRI are better indicators to show where the cancer is and how aggressive it is.

When you receive your husbands biopsy results you will receive a Gleason Score and a TNM staging. For example I am Gleason 9 (5+4) and T3aN0M0.  Here's our guide to how all these numbers work:

STAGING AND GRADING OF PROSTATE CANCER.

I hope this makes it all a little clearer. if you have any further questions, however trivial ask away, you will get answers.

Best wishes - Brian.

I’ve only just realised how awful the name is , it loob as in loobylou my husband calls me that and Jo as in beginning of his name , I’m not named after lube I’ve changed to loobylou now but had a good laugh to myself about the name as I have it in lots groups over lots of years

I thought results just came from biopsy but I’ve seen lots of people mention PSA numbers and relevance.  His was 12.7 I’ve seen higher and I’ve seen lower in here , I feel in limbo I just want to get on with it now if he needs treatment . I’m thinking and I could be naive in thinking it but life will go on whatever they say , we have to carry on , life won’t stop it could  just be a bit different . I was terrified to start with but the more you read from the right sources the calmer I’ve got . I’ve got my head around curable and treatable . No one wants this but if it’s what he’s got we will cope. 

I thought that too but I’d seen a few mentions on it and was confused that I was wrong . Yes I’ll put sats on and biopsy results . Dr said 3 weeks til outpatients appointment for results do they ever come  quicker than that do you know ? 

Thank you . Why don’t they do a PSA screening like they do for breast cancer ? He only thought about it as neighbour had it done , so thankful he went . He was never called by dr to go . 

Thank you Brian and for the link to staging and grading , lots to read and understand but all in a way I can understand . I shall come back to this information when we get results 

It is probably money driven although as the PSA in itself is unreliable I think the feeling is too many people would be worried unnecessarily.  Hopefully a more reliable method is being tested and might be rolled out.  

Hello Loobjo 

No problem. please do come back to us with his diagnosis once the results are in (it sounds a bit like a sporting event ! ).

It's quite possible if he needs treatment he may only be offered treatments available at your hospital as not all treatments are available everywhere - but with the NHS you can "pick & chose".

Best wishes - Brian.