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Prostate Gleason score of 9

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User
Posted 08 Mar 2023 at 18:02

I have just today been diagnosed with prostate cancer 6 out of 16 cores were cancerous. 
my Gleason score is 9

i am so scared and fearing I’m dying. I don’t know what to think. I have to go for scans to see if it’s spread to bones or lymph. 
it seemed to be contained in the MRI so that may be some good news but they want scans to make sure. I’m beyond fear. Can’t eat just can’t stop the anxiety. 

User
Posted 08 Mar 2023 at 19:06

Well I had roughly the same diagnosis five years ago, mind you all my cores were positive. Click on my avatar and read my profile.

At the moment my PSA is 0.1 and there is no sign of cancer. (I won't use the word cured, you can only say cured once you have died of something else).

You are going through the worst time in the 'cancer journey' (I hate that phrase) at the moment, because you don't know what you're dealing with or what the treatment will be. Once you know more, you just have to sit back and enjoy the ride, the doctors are pretty good.

If anxiety is really bad, see your GP, there is no point in suffering when they can probably give you some medication to make life more bearable. In a few weeks you will be feeling a lot better.

You probably don't know this but in the next year you are more likely to die of something other than cancer, but I presume you weren't anxious about getting up each day. Over the next five years you have a 97% chance of still being alive, granted if you didn't have cancer it would be 98.5% . Now if you didn't have treatment the odds start falling quite fast once you get to ten or fifteen years, but if you have treatment you have a good chance of living along time.

 

Dave

User
Posted 08 Mar 2023 at 19:17

Same as Dave I was Gleason 9 with psa off 24.9 3 years ago had 37 fractions off radiotherapy and 2 years on hormone therapy now 0.01 and doing ok working all way through treatment and more or less back to normal there is light at the end off the tunnel stay positive gaz πŸ‘

User
Posted 09 Mar 2023 at 07:41

Thank You. That’s good to hear as I fear what if it has gone to lymph and bone. I just pray he continues to heal. Thanks for the encouragement. 

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User
Posted 08 Mar 2023 at 18:59

As your prostate cancer diagnosis has come early enough, and if you are treated one way or another, the prostate cancer is unlikely to kill you. It develops slowly, and the treatment paths are well established. A bone scan is standard as part of the normal diagnosis procedure. Of course you will be anxious, afraid. But you are at the start of a path which will almost certainly lead to recovery. When I was asked to sign the consent papers for my own treatment, I was hugely relieved to see the aim of the treatment was 'curative'. Just take things one day at a time, You will get through it.

Hermit.

Edited by member 08 Mar 2023 at 19:01  | Reason: Not specified

User
Posted 08 Mar 2023 at 19:06

Well I had roughly the same diagnosis five years ago, mind you all my cores were positive. Click on my avatar and read my profile.

At the moment my PSA is 0.1 and there is no sign of cancer. (I won't use the word cured, you can only say cured once you have died of something else).

You are going through the worst time in the 'cancer journey' (I hate that phrase) at the moment, because you don't know what you're dealing with or what the treatment will be. Once you know more, you just have to sit back and enjoy the ride, the doctors are pretty good.

If anxiety is really bad, see your GP, there is no point in suffering when they can probably give you some medication to make life more bearable. In a few weeks you will be feeling a lot better.

You probably don't know this but in the next year you are more likely to die of something other than cancer, but I presume you weren't anxious about getting up each day. Over the next five years you have a 97% chance of still being alive, granted if you didn't have cancer it would be 98.5% . Now if you didn't have treatment the odds start falling quite fast once you get to ten or fifteen years, but if you have treatment you have a good chance of living along time.

 

Dave

User
Posted 08 Mar 2023 at 19:09

Thank you so much Hermit. I so appreciate your answer. It really did shake me up and at 62 you get rather fearful. It killed my dad 40 yrs ago but they didn’t have much intervention in those days. So I am pleased to hear what you have said. Makes me feel a bit more at rest. Thank You 

User
Posted 08 Mar 2023 at 19:17

Same as Dave I was Gleason 9 with psa off 24.9 3 years ago had 37 fractions off radiotherapy and 2 years on hormone therapy now 0.01 and doing ok working all way through treatment and more or less back to normal there is light at the end off the tunnel stay positive gaz πŸ‘

User
Posted 08 Mar 2023 at 19:18

Wow that’s amazing and I thank you for sharing that. I will just take it step by step as that’s all I have as you say. What’s the pint in getting worked up. Let the Drs do what they best at. It’s so much better now than when my dad was around. Thanks once again. 

User
Posted 08 Mar 2023 at 19:19

Makes me feel a lot better. Thank you 

User
Posted 08 Mar 2023 at 19:21

Treatment options are much better had my radiotherapy on the latest tomotherapy machines really good success rates  like Dave and Cheshire Chris who's posts are excellent have the treatment then on with life πŸ‘

User
Posted 08 Mar 2023 at 19:29

If you have questions (and you will have questions - I know I did!) you can ask the specialist nurse(s) at wherever you are being treated, or just ring the specialist nurses at Prostate Cancer UK. They are unfailingly helpful and informative. You could also download the 'Prostate Cancer Toolkit' which will give you a lot of information about what to expect in the coming months. It will feel a bit overwhelming at the moment, but when you know more and understand more, I think and hope that your fears will subside. Best of luck for the next few months ...

Hermit

 

 

User
Posted 08 Mar 2023 at 19:48

Thank you 

User
Posted 08 Mar 2023 at 20:31

I feel for you..and I know how you are feeling too. We’ve all been or are currently(in my case) going through this, it’s not a journey, more of an ordeal as someone said on here.
If your anxiety persists, don’t suffer in silence…Get Help! Go and see your GP. Mine put me on a low dose of Sertraline(an SSRI) and it’s made a huge difference to me.
The other thing that helped me was talking to people….at first I tried to deal with it myself but I only started to come to terms with it when I started talking to others, on here, with my CNS and by going along to my local Maggies centre who run a Men’s Cancer Support Group….80% of the members have PCa and they are all a huge support.

Keep as active as possible and be good to yourself and you WILL get through this😊

Derek

User
Posted 08 Mar 2023 at 21:10

Thank You I appreciate that so much. Yes it’s been a day of horrible emotions and fear and what next. But I will fight it and make it through. I will also follow up on your advise. 

User
Posted 08 Mar 2023 at 21:19
Okay, here's some good news to focus on - my dad was diagnosed nearly 25 years ago and is the liveliest 85 year old you could ever wish to meet .... my husband was diagnosed 13 years ago at the age of 50, had treatment, cancer came back and he had more treatment 11 years ago - still here & still fit & healthy.

Do you know what your PSA reading was?

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User
Posted 08 Mar 2023 at 21:28

Thank you that is so encouraging. My PSA was 7.4 

User
Posted 09 Mar 2023 at 00:55

Sorry you find yourself here Wallace.

I remember it like yesterday when my husband was diagnosed. Everything you have said, not eating, not sleeping, really thought I would be losing him very soon and completely panicked. 

He was upgraded to Gleason 9 aswell after his prostatectomy, it had spread to a lymph node also.

Things have been so much better than we ever expected. We know he may need further treatment in the future but not worrying about that for now. 

Try not to worry too much (easier said than done I know) but things will get easier when you know what’s going on and have a treatment plan in place.

Best of luck to you. 

 

User
Posted 09 Mar 2023 at 07:41

Thank You. That’s good to hear as I fear what if it has gone to lymph and bone. I just pray he continues to heal. Thanks for the encouragement. 

User
Posted 09 Mar 2023 at 07:42

Thank You. 

User
Posted 09 Mar 2023 at 20:37

This is a long journey, but no matter how bad the situation is, you will be here for many years to come. This is because it develops very slowly.

 

The most downside of it, is the few weeks beginning of the journey (up to diagnoses), when there are many if and buts? (Read my tread and you see what I mean). This is because you travelling in the dark tunnel and could not see what comes to you.

But, once you know the diagnosis, most uncertainties gone, you are in a better situation. Though still anxious, once treatment starts, facing the fact you have no choice but to accommodate yourself with it and then start to use to it both by instinct and some readings, especially others experiences.

You gradually learn how to deal with it, you will start to get back to your life as before and enjoy your life again.

Although, at present hard times, you could not get rid of thinking about it, soon will come days that you forget you have a disease.

User
Posted 09 Mar 2023 at 20:55

Thank you I so appreciate that it’s very dark right now but I see the surgeon on Wednesday and hopefully find out what the next step is. 

User
Posted 09 Mar 2023 at 21:29

At age 46, I had a PSA of 7.6, Gleason 4+5 and T3b.

After radical prostatectomy, hormone therapy and radiotherapy, my PSA is <0.006.  Try not to lose hope.  The NHS worked wonders for me.

User
Posted 09 Mar 2023 at 21:31

Ah that’s good to hear I do hope I can give the same report soon. I appreciate that 

 
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