Hi all just got my PSA result

Brian,

Sorry to hear about your score and I can understand why you are worried.  However, a very good friend of mine was diagnosed in the summer with a PSA over 3000 and his scans concluded it was all contained in his prostate and NO spread.  Hopefully you will get some further tests soon.  Do you have anything booked?  Please ask any questions and the group will help you find all the answers you need.  Best wishes.  David

Hello Brian k and a warm welcome to the Prostate Cancer group.

I am so sorry to read of your PSA result of 1800 but all is not lost. Don't panic and let's take this one step at a time. Yes it's a high reading but until you have had further tests you don't know just where you stand. A PSA test is just an indicator of the cancer, your test results will give some conclusive answers.

To help us help you and answer your questions, are you able to give us some further information - a timeline if you like (you can read mine by clicking on the icon of the beach or my user name).Have you had any scans - have you had a biopsy - do you have any appointments?

The more we know the better we are to help. Ask anything you want, however trivial it may be - someone will have an answer for you.

Best wishes - Brian.

yes scans and initial  meet up at hospital I can think of nothing but this cancer what a shock I am currently awaiting my clinic date my first PSA was 1 week ago and was 1000 my second verification PSA was 1800 to say im worried is an understatement

Hello Brian k 

I have just read this post and another one you posted on another thread.

Yes - on diagnosis you do tend to think of nothing but the cancer and it's great you have told your wife and children. This cancer is a journey - not only for you but a "couple's journey" and with her help and support you will get through this.

A fact I often quote to new Community members is that 98% of men with Prostate Cancer die WITH it not of it!!

It is important to carry on with life as much as possible and try and keep your fitness up - whichever treatment path you take fatigue will be waiting somewhere.

Stay strong and as well as your wife you have an entire Community with you on this journey.

Best wishes - Brian.

Just to reiterate previous comments: don’t panic. 1,800 is high - there’s no denying it, but some cancers produce a lot of PSA and some don’t.  Ironically, some low PSA cancers can be the most dangerous.  If yours is cancer (which I strongly suspect) it has been left to grow without obvious symptoms (otherwise you would have been checked out earlier), so ironically it will probably be slow growing (the high figure is because as cells double, numbers double so you can get big numbers: 4-8-16-32-64-128-256-512-1,204-2,048 shows this.  
I would imagine that if the MRI confirms prostate cancer likelihood, you will be put on hormone therapy straight away.  Don’t worry- the side effects are absolutely fine (intriguing rather than bad) and I have a local friend whose initial reading was 2,016 (the PSA number not the year). He was put on hormone therapy and his PSA dropped very quickly to 2.6!!  Then he has just completed 6 factions of chemotherapy and is doing fine. I wish good luck to you on your journey, and it’s good to hear that you & your wife are going to fight this together.  AW.

yes 1800 is high but ur gp has no idea if it has spread that is unhelpful speculation 

only a mri/ct scan will tell you if its spread !!

did she do a dre on you ? 

my psa was only 52 but  i have bone mets pelvis/spine/rib and sternum incurable 

this is not something you can do alone , you need support from family and friends 

5yrs ago i was in ur position and i must admit i didnt tell anyone till after christmas 

but by the time i had my official diagnosis on the 7th of january everyone knew 

be positive and surround urself with positive people it helps 

gd luck 

Hello Brian , your shock and panic is so reminiscent of my own reaction when my husband received his diagnosis! It is , though, as I have come to learn, a very normal reaction! I spent the first months in tears - even too the extent of  sitting in tears at a meeting. The kinder people were to us, the more I cried!

I found the following website gave me a lot of the information we needed 

https://prostatecanceruk.org/prostate-information-and-support

they have lots of different , easily understandable booklets about different aspects of this journey. We found getting as much information as possible helped my husband make decisions about his treatment and also helped us to ask the right questions at appointments ( make a list of questions before each appointment!).

do take somebody with you to your appointments so they can remember what is said etc. 

if you are attending a hospital where they have long waiting lists, do tell them that you are happy to take short notice cancellation appointments. We did this and got through the various tests more quickly!

keep a record of all the people you speak to in the NHS - drs, admin, nurses etc and get their contact details . You have to be politely assertive to get through the NHS bureaucracy and not fall into their ‘black holes’. It’s exhausting but it’s the only way In our broken health system. ( I did it for my husband - he was in too much shock!)

remember that if things within the hospital system go wrong , each Hospital trust has a Patient Advice ( sometimes called Information) and Liaison Service - PALS or PILS. They can often help unblock logjams for you!

I hope this more practical advice will give you the tools you need right now to help steady your world which feels like it’s spinning out of control. It will settle in time :) you will soon be posting here like an old hand !! 

we are all holding out our hands as you step out onto this new journey :) good luck!