My dad was diagnosed with prostate cancer yesterday, Gleason Score of 9 (4+5)

Hello KeeWi22

Welcome to the prostate group.  So very sorry to hear the news about your dad.

You must be stunned and perhaps not able to take in much at the moment.

It appears that you've already been told that his Gleason score was 9 and it is this score which identifies the cancer as being very aggressive,.  Sightly on the positive side   9 could be either 4 + 5 or 5 + 4 and 4 + 5 is slighlty less than the other way round.

It really does depend on the "stage" at which the cancer is as to what the treatment options might be.  The 9 score does not indicate the stage.  It's not really possible to give a complete "staging" until your dad has the CT and bone scan.

You already know that the cancer has gone through the prostate wall and is therefore  "locally" advanced.    Although surgery is not a good option for locally advanced prostate cancer, despite the 9 score it may still be possible to treat it using radiotherapy, possibly combined with hormone therapy to get a "good" result.  By this I mean it may possibly be that the cancer ceases to be a threat for some time, many years that is,   depending on his general health.

If the cancer is more advanced than locally, there are other treatment options which can be used to prolong your dad's life and also to maintain some quality of life.

I appreciate that cancer is scary, but there is no indication in what you write so far that you will lose your dad imminently

It's hard waiting for tests, scans and waiting for results I know and particularly not knowing what the outcome might be.  It's reasuring to know that things go much faster in the NHS when cancer is diagnosed and there are rules about how quickly your dad's treatment should start.

In the meantime you may find the Macmillan booklet on "Understanding Locally Advanced Prostate Cancer" helpful  Unfortunately it doesn't appear possible to download a copy from the Macmillan site at the moment, but you can order one by phoning 0808 808 00 00

You may find a Macmillan Information and Support Centre (MISC) near you, which is a great service, giving information and the capacity to signpost you to local servcies and support groups and can  help with any financial, emotional or practical aspect of cancer.  They will have a copy of the booklet or you/yiur dad can just call in and talk.  Some of the people in the centre will have experienced cancer themselves and it is always good to talk to other people going through, or having gone through the same experiences.

To find your nearest MISC   Click here

I hope this helps.

If you need any more information, please get in touch

Thank you it is just such a scary time especially as dad had gone with something totally unrelated and they said wanted to check his prostate then it's all snow balled - he had no symptoms other than getting up in night to go to the loo which he mentioned to gp who just said at his age normal plus he's on water tablets too :-(

The t3 should have a letter after it?  Not sure what makes it stage 5 - maybe high Gleason but as you say PSA not overly high although from my research not sure that necessarily mean a lot.

Keep us updated x

Prostate cancer doesn't always cause any symptoms.  As the gland can enlarge with age anyway, without there being cancer, the presence of symptoms often indicates Benign Prostatic Hyperplasia.  (BPH).  This can be coincidental to cancer.

"Staging" simply put, is nothing to do with the Gleason score, it's a measure of how far the cancer has spread physically.  T 3 means the cancer cells have spread outside the gland.  There are different ways of describing the stage. The TNM staging system is one of these.

The Gleason score on the other hand is a measure of how aggressive or how high a risk the cancer is.

The risk is that the cancer will spread, this means a higher score cancer will spread faster, but it doesn't necessarily mean that it has spread.  It depends at what stage it's detected.  Hence even a very aggressive cancer can be treated if detected at an early stage.

PSA is a very erratic diagnostic tool for prostate cancer.  There are men with relatively high PSA and no cancer and men with cancer and low PSA. BPH and prostatitis can cause raised PSA for example.

 A raised PSA, plus a Digital Rectal Exam only suggests that further tests are needed however.

PSA comes into its own however AFTER. treatment as it.is a good indicator of how effective the treatment is.

Hi,

Thank you so much for your reply; it really is helping to hear from people.

I’ll no doubt be in touch when we’ve got the bone and CT scan results.

K

Hi

I think they’ve said we’ll know the staging/whether it’s T3a or T3b after the further tests, but I may be confused about that.

I’ll update after the results x

hi k 

i was diagnosed on the 7th jan with advanced prostate cancer , gleason 9 ( 5+4) psa 51 .

i had spread to my pelvic lymph nodes a spot on my pelvis and a rib told i was inoperable and it was incurable ! .

i was started on bicaltumide tablets straight away had my first prostrap injection after 2 weeks now on 3 monthly injections .

had a course of docetaxel chemotheraphy , now i'm on abiraterone tablets because through all that treatment i have further spread to my spine and sternum ! .

through all this i have never missed a days work ( self-employed gardener) so its quite a physical job , its not stopped me doing anything 

a lot of this is down to a positive mental attitude , right from the start i was determined to not let this horrible disease change my life for as long as i could 

i had no pain or symptoms it was just by accident it was found , i still have no pain now . 

many people can live for yrs with prostate cancer , wait for the next lot of results to see how they turn out hopefully it hasn't left the prostate .

but above all stay positive and instill in ur dad that positive attitude too , dont let cancer take over ur life or his just do everything u normally would .

hopefully there's no spread and you get a good outlook for him .

paul

Hi,

Just to explain an operation to remove the prostate is generally not done if the cancer has spread as it will not remove the cancer cells which have spread which will first have spread to the local area and then out. Also your Dad's age would generally preclude him from surgery which is a gruelling operation with what can be quite a long and debilitating recovery time and side effects - some of which could be permanent.  Though if he is generally very fit with no heart or lung problems, bladder and bowel problems then age would be lower down the consideration list.  When I was diagnosed at 73 it was considered I could just have the operation because I was very fit but it would affect my bladder and bowel (where I already had problems) so much - even in the short term but could be longer term that it would have to be a difficult operation and difficult recovery.  I know of one person - a neighbour who had the robotic operation at 76 but he looks around 60 and is so fit it puts me to shame as I still go to the gym 3 or 4 times a week at 75.  He recovered well and it looks like they got all the cancer - this is not always the case because small areas of cancer can be missed at operation necessitating the need for further treatment with external beam radiotherapy which is likely to cause more and worse side effects to the surrounding area of bladder and bowel as there is no prostate in the way.  Maybe with the robotic operation more older men will have a radical prostatectomy for prostate cancer which is localised within the prostate as recovery seems to be shorter and maybe fewer side effects but this is not always the case.  Another reason I did not have the prostate removed was that even though my score was 7 (3+4) was that at MRI - which was done after the biopsy - should always be done before, the tumour was pressing on the back of the prostate and there was a bulge so the T score was upped to T3 disease as the cancer could have spread.  So the best option then was hormone treatment and external beam radiotherapy which would be planned so that it could hopefully "mop up" any cancer cells that had escaped in the local area - though none could be seen as smaller areas of cancer cannot be seen.

We all know about the waiting for appointments and then waiting for results it really is the worst part of this journey and is far worse for the family and loved ones than for the cancer sufferer themselves.  Once you get the scan results in a Multidisciplinary Team MDT meeting will be held to make a plan for treatment options for your Dad.  Just hope it doesn't take too long.

To make a positive out of such a shocking experience please tell all your brothers if you have any to get a regular PSA check from the age of 45/50 as if their Father has prostate cancer they are twice as likely to get it so should be checked regularly so that it can be found early and hopefully cured.  Infact all male friends as the sooner any raise in PSA is found then they can be checked out in case it is an indicartor of early cancer which can be cured - though as you know PSA is only an indicator and needn't always mean cancer - it could be an infection and could be prostatitis and even a low PSA does not mean there isn't cancer.

Have a look at the Prostate Cancer UK website and look at their leaflets too.  You will find on there a free telephone number and you can speak to their specialist prostate cancer nurses on weekdays.  They have been brilliant with me as living where I live our hospitals are so busy I only got to speak to my cancer key worker once and managed to get e mail advice from her once.  My urologists secretary was much more helpful as her Dad had had Prostate Cancer but the specialist prostate cancer uk nurses were absolutely brilliant.  You can also e mail them or chat on line but that sometimes takes a while and I found phoning them to be better.  Also find out where your local Maggies Centre,  or other Cancer Support Group is as they are brilliant too and run lots of different courses to help the sufferer and his family through the process and always good to speak to other people going through what you are going through.

Take care

Des

Hi

Thanks so much for taking the time to reply.

Hope you continue with your progress/recovery.

Your words of advice are what we need to hear - trying to stay positive. Been today to get dad’s passport renewed so I can take him on holiday, all being well.

K

Hi

thank you for your kind and helpful words - it really is helping me get my head round everything getting all this information from people who have been through it.

its helping me speak to my dad about it and means I have something positive to tell him.

k

Hi KeeWi

I was diagnosed in September 2018 as locally advanced T3a, which means the cancer was at the edge of the prostate capsule but hadn't broken out. My Gleason score was 4+5=9 so slightly less aggressive than your Dad's. A pelvic CT scan and bone scan showed no metastases so I was N0 M0. My PSA at diagnosis had risen to 15.

I started hormone treatment in October 2018 and had 20 sessions of radiotherapy in February and March this year. In mid-June I had an appointment with my oncologist and my PSA was undetectable.

Your oncologist will tell you that PCa is very slow growing and treatment regimes are improving all the time so try not to worry too much.

Good luck with your journey.