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Dad - Gleason score of 8

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User
Posted 04 Nov 2016 at 21:26
Dear all

My Dad is 60 years of age and has just been diagnosed with prostate cancer. His PSA score was 17.5 and following a biopsy of his prostate he has a Gleason score of 8 on one side and 7 on the other. He is now waiting to be called for an MRI and bone scan to the extent of the cancer.

His symptoms prior to being diagnosed were frequent weeing and pain when weeing.

I have tried to do as much research as possible following the diagnosis and now understand that my father's Gleason score means his cancer is aggressive and more likely to spread quickly. I am so scared for him and my family and I'm concerned about the implications of his cancer having already spread and what that means for him now and the future.

I wonder whether there is anyone in this community who received similar results from the biopsy and who can let me know what to expect next?

Thank you for any help, reassurance and positive stories that anyone can give me to help get through this awful time.

Hannah xxx

User
Posted 05 Nov 2016 at 01:34

Hi Hannah, the first thing to say is that Google is not your friend right now - information on the internet about prostate cancer is not always reliable and much of it is American where things tend to be quite different. The second thing is that 'aggressive' does not mean what it sounds like - it is unlikely that your dad's cancer is racing off around his body as it tends to be quite a slow moving cancer.

You have mentioned the Gleason score as G7 on one side and G8 on the other. It would be really helpful to know the actual numbers - G7 will be either G3+4 or G4+3 and G8 will be G3+5, G5+3 or G4+4. Do you know which? They really make quite a big difference!

As hard as it is, there is little point trying to guess what the results of the scans will be and therefore what treatment options will be available. His PSA is high enough for them to have tested and diagnosed him but PSA is not a reliable way of guessing whether or not a cancer has spread, or how far. My husband was 3.1 and it had spread to his bladder (only a tiny bit and he is fine now), some people have PSA in the hundreds and no spread.

Once dad has had all the tests, a multi-disciplinary team at the hospital will probably review his results and make recommendations about what treatments are available to him. Unless it has spread, he will then have to choose which treatment he wants and that will be affected by which side effects he is willing to put up with or risk. You can help him prepare for this by downloading the toolkit from this website - it has sections explaining all the pros and cons of the different treatments.

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

User
Posted 05 Nov 2016 at 09:08

Hi Hannah. If it's any consolation at all this is likely to be the worst bit of the diagnostic/treatment path process, with so many more questions than answers and the tendency most of us have to let imagination run in a negative direction.

I absolutely agree with Lyn above who seems always to offer balanced and considered responses, none more so than when she says Google is not your friend at this stage. It took me longer than it should have to learn that lesson, and it made my own diagnostic process more of a torture than it needed to be. Don't make the same mistake if you can avoid it.

I hope it goes well for you. There's a treasure trove of information on here, but even that I would recommend taking in stages, as overload tends to blank out the positives too.

 

Edited by member 05 Nov 2016 at 09:08  | Reason: Not specified

User
Posted 05 Nov 2016 at 10:33

This early phase is so so difficult both for your Dad and for you trying to make sense of it. You do need full information before knowing what your future path will be. Also given the many different types of prostate cancer, 27 I think, do not assume that someone with an apparently similar set of figures will react the same. I have learnt in nearly five years since diagnosis just how individual and unpredictable is the path.

But I can offer encouragement from my own situation. I was a Gleeson 9 and had spread in my bones and was initially given a two year prognosis. I am still here nearly five years on and now there are new drugs available which help.

For now let's hope there is no spread and it can be treated as a curative diagnosis. But if it proves to have spread to the bones it does not necessarily mean that things would deteriorate quickly. In general the cancer grows slowly.

I was 59 when diagnosed and I hope to celebrate my 65th birthday with my children next May. Keep asking questions on here it is a very supportive community.

User
Posted 05 Nov 2016 at 10:35

Hi Hannah

As said you could do with more info. I was 58 diagnosed with G8 (4+4). I'm still here some 12 years on. The last 8 of those have been free of cancer treatment. Check my profile.

Ray

User
Posted 05 Nov 2016 at 11:17

The diagnosis letter will give the full Gleason score when you get it or dad can ask his GP.

The letter will also state which kind of prostate cancer they found

Edited by member 05 Nov 2016 at 11:18  | Reason: Not specified

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

User
Posted 05 Nov 2016 at 11:30

This is exactly what the forum is for 👍

Bri

User
Posted 05 Nov 2016 at 17:12

The replies cover essentially the situation from what has been disclosed so far. Another factor is how much cancer was found in each core that was taken and how close to the periphery of the prostate cancer is found. Here the MRI scan and where done a bone scan can help in further assessing the situation and a more complete diagnosis to include staging be given. It is natural for men diagnosed with PCa to assume that they are in a worse situation than they may be, so it is important not to jump to conclusions but to ensure they understand their diagnoses and when this is available to discuss this with their consultants and obtain advice on treatment(s) from which they may benefit. For some there will be more options than for others. It is important therefore, that men understand the pros and cons of various treatments. The aforementioned 'Toolkit' is a very good place to help start to understand this complicated disease and how it can be treated.

Barry
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User
Posted 05 Nov 2016 at 01:34

Hi Hannah, the first thing to say is that Google is not your friend right now - information on the internet about prostate cancer is not always reliable and much of it is American where things tend to be quite different. The second thing is that 'aggressive' does not mean what it sounds like - it is unlikely that your dad's cancer is racing off around his body as it tends to be quite a slow moving cancer.

You have mentioned the Gleason score as G7 on one side and G8 on the other. It would be really helpful to know the actual numbers - G7 will be either G3+4 or G4+3 and G8 will be G3+5, G5+3 or G4+4. Do you know which? They really make quite a big difference!

As hard as it is, there is little point trying to guess what the results of the scans will be and therefore what treatment options will be available. His PSA is high enough for them to have tested and diagnosed him but PSA is not a reliable way of guessing whether or not a cancer has spread, or how far. My husband was 3.1 and it had spread to his bladder (only a tiny bit and he is fine now), some people have PSA in the hundreds and no spread.

Once dad has had all the tests, a multi-disciplinary team at the hospital will probably review his results and make recommendations about what treatments are available to him. Unless it has spread, he will then have to choose which treatment he wants and that will be affected by which side effects he is willing to put up with or risk. You can help him prepare for this by downloading the toolkit from this website - it has sections explaining all the pros and cons of the different treatments.

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

User
Posted 05 Nov 2016 at 09:08

Hi Hannah. If it's any consolation at all this is likely to be the worst bit of the diagnostic/treatment path process, with so many more questions than answers and the tendency most of us have to let imagination run in a negative direction.

I absolutely agree with Lyn above who seems always to offer balanced and considered responses, none more so than when she says Google is not your friend at this stage. It took me longer than it should have to learn that lesson, and it made my own diagnostic process more of a torture than it needed to be. Don't make the same mistake if you can avoid it.

I hope it goes well for you. There's a treasure trove of information on here, but even that I would recommend taking in stages, as overload tends to blank out the positives too.

 

Edited by member 05 Nov 2016 at 09:08  | Reason: Not specified

User
Posted 05 Nov 2016 at 10:33

This early phase is so so difficult both for your Dad and for you trying to make sense of it. You do need full information before knowing what your future path will be. Also given the many different types of prostate cancer, 27 I think, do not assume that someone with an apparently similar set of figures will react the same. I have learnt in nearly five years since diagnosis just how individual and unpredictable is the path.

But I can offer encouragement from my own situation. I was a Gleeson 9 and had spread in my bones and was initially given a two year prognosis. I am still here nearly five years on and now there are new drugs available which help.

For now let's hope there is no spread and it can be treated as a curative diagnosis. But if it proves to have spread to the bones it does not necessarily mean that things would deteriorate quickly. In general the cancer grows slowly.

I was 59 when diagnosed and I hope to celebrate my 65th birthday with my children next May. Keep asking questions on here it is a very supportive community.

User
Posted 05 Nov 2016 at 10:35

Hi Hannah

As said you could do with more info. I was 58 diagnosed with G8 (4+4). I'm still here some 12 years on. The last 8 of those have been free of cancer treatment. Check my profile.

Ray

User
Posted 05 Nov 2016 at 11:10
Thank you everyone for your responses, they have put my mind at ease; more than you realise. I had let google take over slightly and my mind has ran away with me to all sorts of negative conclusions. I guess that's what people generally do when they hear the word cancer.

The consultant didn't break down my dad's Gleason score, so I don't know whether the worst side is a 4+4, a 5+3 or a 3+5. This is something I will definitely ask when we return for the MRI and bone scan results.

Your personal stories have made me feel much better and I need to stay as positive as possible for dad to keep him going. I will definitely have a look at your profile Ray and I will update you as to how the next phase of results go.

Thank you again ❤️

Hannah xx

User
Posted 05 Nov 2016 at 11:17

The diagnosis letter will give the full Gleason score when you get it or dad can ask his GP.

The letter will also state which kind of prostate cancer they found

Edited by member 05 Nov 2016 at 11:18  | Reason: Not specified

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

User
Posted 05 Nov 2016 at 11:30

This is exactly what the forum is for 👍

Bri

User
Posted 05 Nov 2016 at 17:12

The replies cover essentially the situation from what has been disclosed so far. Another factor is how much cancer was found in each core that was taken and how close to the periphery of the prostate cancer is found. Here the MRI scan and where done a bone scan can help in further assessing the situation and a more complete diagnosis to include staging be given. It is natural for men diagnosed with PCa to assume that they are in a worse situation than they may be, so it is important not to jump to conclusions but to ensure they understand their diagnoses and when this is available to discuss this with their consultants and obtain advice on treatment(s) from which they may benefit. For some there will be more options than for others. It is important therefore, that men understand the pros and cons of various treatments. The aforementioned 'Toolkit' is a very good place to help start to understand this complicated disease and how it can be treated.

Barry
 
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