What does PSA test result 133 mean ?

Hi Strepus and sorry to hear

Yes 133 is fairly high but doesn't necessarily mean  advanced.

One thing that u  haven't mentioned is a MRI scan because that can tell u a lot about where any tumour actually is.Its good that u have started on HT  to potentially stop any further growth.

Let us know when.u have further info especially MRI

Best wishes

Steve 

You will be scared while all the tests are done but don’t be shy to ask questions.

133 is high but you will have to wait until the biopsy and other tests before you get a diagnosis.

Do not google too much if you can help it. This sIte has a huge amount of great information and even more support from the wonderful and well respected experienced prostate travellers like you.

My profile is worth a look to see what I’ve done for the last 3 years but along soon will be more able and experienced forum people and champions to ease you mind and help you with any support you need.

Please don’t panic.

I told people I wanted to at the start but three years on loads of grinds know, but no t all. I cherish my privacy and this forum is anonymous so we all know you are there and you know we’re here but we don’t actually know you so talk to us. It’s your choice who you tell, but you need someone’s hand to hold because you are in shock.

We were there where you are now, you have years in front of you, a positive attitude is a must but we all cry. So don’t guess. Wait for the diagnosis and the best of luck. We are here.

Avoid Google, often results are out of date. Take advice from the brilliant and informative guys on this site. My husband's initial psa was 1200 and that was nearly 5 years ago.

Gina

Hello Srepus010acd87 

A warm welcome to the group, although I am so sorry to find you joining us.

For any research you are doing use trusted sources such as Prostate Cancer UK, Cancer Research UK and Macmillan. Try and avoid Dr Google.

So a "normal" PSA for a 64 year old would be 4.5 - 6  thus 133 is considered high. The good point is your urologist has already started you on Hormone Therapy - this in a nutshell (no pun intended) will remove your testosterone which is the cancer's food and put it to sleep - in effect stopping it growing and going anywhere else.

The biopsy and MRI scan will lead to your diagnosis, tell you if it is "Advanced" and any additional treatment needed as your journey progresses. The hardest part of the journey is waiting for tests and results.

I started my personal journey with a PSA of 182 and almost 4 years ago there was no sign of a spread, even with that PSA. You can read my journey by clicking on my name or avatar.

The decision to tell others is yours alone. I found that 95% of folk I told were helpful and sympathetic and my wife and children have been amazing at supporting me.

Feel free to ask any questions however trivial, there will always be someone with an answer for you.

Best wishes - Brian.

Thanks Brian, your words have helped, there are two thoughts currently in my mind now

1. Even at my age, in the back of my mind I thought I was "gonna live forever", I guess reality has now whacked me upside my head

2. Trying to decide when and how to tell the missus, i know she is going take this worse then me cos she is a big worrier

Thanks again

It’s very hard to have to reset all your future plans even if they were basic. I became very angry about not being able to live out my life with my Darling, for all time. My darlings attitude from the start was that anyone can die anytime and she could die before me, run over by a bus. I couldn’t hack that thought and felt that I was the one causing this shortened life together, I still do. But little by little I realised that this dreadful couples disease will give me the opportunity to be the person I want to be with the love of my life and be able to do all the things together that we wanted to do, and not need not wait forever to do them.

Each day can be a good day if you wish it. But your head will take a lot of convincing.

Your worries are shared with every you tell and how you think they will react it’s not how they do react. Be brave and keep the communication with your own Darling and travel together on this cancer pathway for the many years you still aught to have - but in reality how long is that piece of string for anyone with or without cancer.

I have dreadful days and don’t want to get out of bed. I am so tired sometimes I want to go back in time and somehow dodge this prostate cancer and get back to normal. But I can’t, and I get up, feed the cat (Mr Vicious) and take all my pills and try to imagine I am normal. I’m limited by the cancer but not limited by my mind. So be brave my friend and be the best new normal you can.

I will cry and laugh with you.

Good luck and be yourself.

Hello Srepus010acd87 

I am 70 next month, married this year for 46 years. To answer your 2 questions.

1. I started my journey in hospital with almost no kidney function. The nurse looking after me after I had a catheter fitted (this was 4am Christmas Day Morning) said "at least you will see Boxing Day and your grandchildren now".

it took a few months to really understand what she said - but then I thought - I could have left the hospital in a box!! My attitude changed then, I don't worry about anything, have as many holidays as I can and to be blunt Lorraine (Mrs Millibob) and I enjoy life to the full.

2. This is a "couples cancer" and it will affect you both. I had my informal diagnosis in hospital and my wife is a retired nurse so she knew!! I have told my family everything and the support from our 4 children and their partners has been amazing. Lorraine comes with me to every appointment and act as my secretary even asking her own questions.  

I think you need to pick your moment, have all your facts to hand and tell your wife.

Advances in the treatment of this cancer are coming online almost monthly and there are "plenty of tools in the toolbox".

It's worth remembering that 98% of men with a Prostate Cancer diagnosis die WITH the cancer, not OF it!!

I hope the above helps - happy to chat.

Best wishes - Brian.

Hi Srepus010acd87 , some great advice already so I will keep this to my own personal experience.  Initial PSA 74, it got worse when MRI showed outside the gland.  Biopsy followed and downhill again with diagnosis T3bN1M0 and Gleason 9.  Since then I have gone to T3bN1M1, so not brilliant.  The good news is that even with that diagnosis, I generally feel fine after 8 years.  Yes there have been a few low points but if you can ride those out, the highs are even better.  My wife was involved right from the start and it’s obviously a personal choice but your OH needs to know sometime.  Prostate Cancer (PCa) is not the disease it was just a few decades ago.  Survival rates and treatments are improving all the time and PCa is generally so slow growing a month or so delay isn’t too much of a problem.  What PCa did for us was allow us to focus on what was important and adapt our lifestyle accordingly.  My diary has blood tests and 3 monthly checks programmed forward and if not on additional treatment, we book holidays and treats.  We have moved from our family house and simplified our affairs wherever possible.  Our life is very different to the one we imagined, but isn’t life always like that?  I couldn’t imagine going through this on my own and my wife’s support is so vital to me (not just in the fact that 4 ears are better than 2!).  My grandkids were age range 3 to 8 and I merely dropped into the conversation that I couldn’t do certain things because of the cancer.  None of them were at all worried and now if I can’t join in, they just say ‘that’ll be the cancer grandpa’.  Life does go on and while I am not saying it has been all great, it isn’t bad either.  Try not to read up on Google, it will scare you and in my experience reality isn’t anywhere near as scary!  Please come back with any questions, this is a fantastic site for real life stories and experiences.

Hi Srepus010acd87 

As a wife I’m surprised your “missus” hadn’t twigged something is wrong.  In my humble opinion I would share this news with the person you’re living with. It’s not just sharing its getting moral support too which you will need. 

best wishes 

Liz & OH xx

Hello srepus

im sorry to hear of your worries. Others on here have already given you some good advice as you embark on this journey.

i note that you have started on hormone therapy already. I hope they advised you of the side effects which include the possibility of loss of libido ( sexual desire ) and erectile dysfunction? You say your wife is a worrier. Will she worry about your potential loss of interest in her if she doesn’t understand the cause?

as my pseudonym suggests, I, too, am a worrier. ( in fact I think all us wives posting here do their fair share of worrying on this journey,!) looking back over the last 3 years I am so glad my husband shared everything with me and I would have been hurt if he hadn’t. 

you will need your wife’s support as you go forward - a trouble shared is a trouble halved. What we have been most surprised about is that this sharing of our fears and anxieties has brought us so much closer together. I once said to my husband that getting through past difficult times together has given me the strength to fight this cancer together! 

re living for ever! Now that messed with my head too! The diagnosis and the fear of losing my husband brought me face to face with our own mortality. It’s like an anticipatory grief - this sudden confrontation with the fact that none of us will live for ever! It’s painful! I try to push that into the recesses of my brain and concentrate on the here and now so that I don’t miss the joy of both of us being together and doing things we enjoy and taking pride in what we have achieved together.

its 3 years this month since my husband was given his very suspicious scan results. Life is sweet….and good!