Shocked 52 year old with Gleeson 9

I know you don't want to be here (none of us do!) but welcome anyway. I can't really give much input on the Gleason side as mine was 7 but I did have a complete 'mare with the biopsy. For me it was very painful afterwards, I passed what seemed gallons of blood (with clots) and I suffered Septicemia afterwards. The biopsy is a very varied experience for everyone, some are back to work the next day, others (like myself) have bad times with it.

On the Gleason 9 front there are lots of encouraging stories on here, I think as Lyn says, the 'aggressive' word is a bit OTT. It is aggressive in prostate terms, but the cancer in general is slow growing compared to other cancers, and there are lots of treatments available with more becoming available all of the time.

Hope this helps,

Mark

Hi Tony,

Welcome to the forum although I'm sorry that you find yourself here.

Ok, first take a deep breadth.  A Gleason score of 9 does put you in the high risk category (of the cancer spreading outside the prostate within a few years), but your PSA is quite low, which suggests it's localised and therefore curable. The MRI scan and bone scan will help confirm this and also point the way to the best treatment, of which there are many.

Yes, these are unsettling times, but time is on your side.

Therefore, I would reading some of the great publications on this website

http://prostatecanceruk.org/prostate-information/just-diagnosed/dealing-with-my-diagnosis

There are also trained prostate cancer nurses who can give you reassurance, contactable by phone or email...

http://prostatecanceruk.org/get-support/our-specialist-nurses

Of course, there are many of us too on this forum.

re. survival rates, survival rates depend on many many things not just Gleason score: your age, your staging (which your MRI and bone scan will give you), your state of health, your treatment pathway etc. etc. etc.  

Here are some stats from Cancer Research UK....

For men with prostate cancer in England and Wales

• around 95 out of 100 (around 95%) will survive their cancer for 1 year or more
• almost 90 out of 100 (almost 90%) will survive their cancer for 5 years or more
• more than 80 out of 100 (more than 80%) will survive their cancer for 10 years or more

So, I hope that eases your mind a little.

Keep us posted

Flexi

Edited by member 03 Feb 2017 at 11:52  | Reason: Not specified

Hi Tony,

I was diagnosed with Gleason 9, at the tender age of 54, here I am ten years later, with a current PSA of 0.4, and no plans to meet St Peter any time soon.

All of us on this site know how terrible it is to be diagnosed with PCa (Prostate cancer), and how difficult it is to talk things through with our wives and sweethearts.

The best advice I can give you, is accept that you have had a shock and don't beat yourself up about having to make quick decisions, this cancer, ever G9 isn't that aggressive, you have plenty of time to take stock of your emotions, read and research as much as you feel you need to know, and then in a few weeks time, when the emotional dust has settled, and the results from your bone scan are through, you will be able to decide what treatment option you prefer.

We try to live by the dictum that 'I've got cancer, but cancer hasn't got me'.

Right at the moment, I am giving far more thought to how I will keep the grandchildren amused at half-term holiday, than I am about my next stage of cancer treatment.  Life is for living, since diagnosis I have been blessed with grandchildren and wonderful holidays, Amsterdam, Corfu, Malta, Tenerife, Madeira, Toronto, even a week in Penzance.

So cheer up, you can have lots of fun and live many years with a Gleason 9 diagnosis.

:)

Dave

I think it helps if you understand that aggressive doesn't mean what you imagine. It makes it sound like the cancer is running amok and taking over your body but generally that isn't the case.

Tony

I'm 46 and Gleason 9.  I had my prostate removed just before Christmas.

The thing which honestly helped me most were the guys (and wives) who told their stories of Gleason 9 and how they are still around many, many years later.  It made me realise that I'm not going to die anytime soon and have several really good quality years to look forward to.

You'll be in a better place once you've had your scans as at least you'll have a lot more information.  The waiting around is tough.

Everyone on this forum is helpful and encouraging and some people are very knowledgeable.  The PCUK specialist nurses are great too - give them a call.

You'll have people on this forum who will walk with you through the journey.  

Walter

Aye, I well remember the exact words when I was told I had advanced prostate cancer that couldn't be cured but could be treated. With treatment, I was told I could have "many more months or years". I immediately noticed she didn't put a 'many' in front of years.

My prostate settled down quite quickly as I remember, a bit of blood in the poo for a couple of days, walking around like John Wayne for a few more days and after that all OK. The biopsy was a real bowl of roses. The first 3 clicks and I thought "what's everyone talking about, this doesn't hurt, it's a walk in the park". The next 3 clicks, "oh, what's that, I felt that". The next 3 clicks "ouch, I don't like this at all". The last 3 clicks and I'm sweating like a stuck pig. A pretty nurse held my hand though so that helped a lot.

I know it's hard but whatever you can do in the way of exercise will help with alleviating fatigue and aches and pains.

Can't help on this one, I had MRI, CT and bone scans prior to the biopsy.

 tony 194

 Hello mate i have recently been diagnosed  with a gleeson score of 9 but higher PSA i too was in total shock upon the news of my cancer   its not easy, however my family are strong and they know i will need to lean on them, finding this forum is a huge help to me too Gleeson 9 is high my friend but its not the end of the world we will all help you during this time stay strong and keep in touch.

Baldyman

How are your back pains since biopsy, hopefully they have gone away now? Thats one "test" we won't need again, rejoice!

Enjoy the weekend

Kev

With regard to the decision on using the comprehensive private medical insurance, I'd go private because:

1. It saves the NHS money.

2. Providing it really is comprehensive, your uro/onco will be able to proceed with whatever treatment they believe is best for you and not be subject to NICE guidance or local funding constraints.