Gleason Score

Hello Christine (Goggie) 

Cracking post.

* Yes your Gleason Score can change as the cancer evolves - I started as a Gleason 7 and now am a proud member of the Gleason 9 club - (click on my avatar to see my journey and how it changed !).

* Yes you can have a low PSA with an "Aggressive Cancer" - a "low secreter". I don't think there is a test for this but I know if I "tag" Alwayshope to the post we will find out. (I don't know  but I would like to!).

I hope this helps - I love it when I don't know an answer but Alwayshope loves a challenge!

Best wishes - Brian. 

Hi Goggie,

I was diagnosed with a Gleason score of 3+4=7 and a PSA of 4.7

After 18 months on AS these had risen to a PSA of 14 but a Gleason score of 4+5=9 (aggressive).

Then I had a bone scan and a PET-CT scan and then started on Bicalutamide tablets and Decapeptyl injections before starting RT in the February.

You can read my journey by clicking on the picture of my cat.

Best wishes 

Peter 

Hi Goggie (Christine ).

Very sensible questions. Yes the Gleason can change, usually as a result of changes found after a scan and a repeat biopsy of tissue taken from cancerous material. Peter has had a prostatectomy plus salvage radiotherapy (did he finish the course?) which means that hopefully he is cured. There is always a nagging doubt that it may have seeded elsewhere but he had no bone or lymph node mets which is good. Is Peter still on hormone therapy for a while - this will keep the PSA low for the duration but when he comes off it you should keep an eye on it just to check that there is no recurrence.

To answer your second question a low initial PSA with a high Gleason does not automatically mean you are a low secreter. The histology report from the initial biopsy would be able to tell you if the cancer exhibited this type of cancer - it is rare and normally treated more aggressively from the start.

Just to add some information on rare cancers I have added a link so that you know what words to look for on the biopsy report if you have it. Don't forget that you can ask for copies of all records if you want to check that you have been told the full picture.

https://prostatecanceruk.org/prostate-information-and-support/further-information/rare-prostate-cancer

I have been delving into the relationship between PSA and Gleason score in association to low secreters. Basically Peter is in the low risk category as his PSA is above the level where it would be considered a concern. In fact, with his treatment to date he is in the higher group to have a long term successful outcome and survival. If you want to read the study I have attached it.

https://www.sciencedirect.com/science/article/pii/S0959804922018287

Just to clarify, by low risk I am referring to the relationship between PSA and Gleason score. A Gleason 9 is classified as high risk for the potential to spread but because the prostate has been removed and the area irradiated this has reduced the risk considerably.

Thank you Millibob 

you always come up with an answer .I would love to think if the Gleason score goes on way as it evolves as u say that it could go the other way if denied Testosterone..but I guess that’s wishful thinking …Another quick thought In this country the guidelines for PSA are over 4.9 and a GP needs to react -in America it is 4.0 — I think more should be done to look at a rise in PSA before it gets to either .. My husband was1.9 the next test 4.4 nothing done !! Fortunately he didn’t wait for his yearly check -just 6months-7.6 and still the GP classed as non urgent biopsy Gleason 9 !! I wonder if he had been checked sooner if the Gleason would have been lower …you never know.. GP apologised! 
thank you again for your response Christine 

Dear Alwayshope 

Thank you so much again for your replies it has been a worry of ours and this has made me feel a bit better 

I was worried because after my husband had is Prostrate removed and there were margins his Gleason was .06 after Bicalutimide it went to 0.01 which was good is good but because is initial Gleason was only 7.6 and the biopsy not great I was worried that it was in retrospect despite the low score still possibly bad .. if that makes sense 

You guys are such a help to people I can’t thank this group enough .I wish you and everyone continued good news and a good life 

best wishes to all Christine 

1. Hi Peter 

• thank you so much for your reply it’s interesting how it evolved in your case .I do worry that AS is a good option but I do know it works fine for a lot of men 
• I am sorry in your case it didn’t and I hope things are going well with your current treatment.. 
• How offfen did you have a PSA check up if you don’t mind me asking ? 
   
  i know sadly we can’t change anything but I do think tests should be done if your PSA is 4.0 or over OR if there is any notable increase within a year 
• I feel had my husband been put under observation and sent for further tests when His had risen fro 1.9 in a year to 4.4 then we may be in a different situation 
• who knows and the Gleason score may have been lower 
• again who knows 
• I do think this should be addressed more in GP surgeries though 
• Thank you again for your helpful reply 
• After a year and a half my husband is just completely a salvage radiotherapy on the bed after his prostectomy had margins and spread into his Seminal Vesticuls 
• His surgeon removed no nodes so we tried initially to have full bed and node radiotherapy but his Ureatha was exposed and was shutting down after a four week break they rescheduled treatment for just the bed 
• and he is on Bicalutamide 
• have to wait and see 
• it’s a long haul as you all know 
• Take care Christine 

Hi Goggie .

There are NICE guidelines on things like how often a PSA test should be done if put onto AS - every 3 -4 months for the first 2 years. Also the kinetics mean that a rise of 0.7 in a year should trigger further investigation. An MRI should be done annually and a DRE every 12 months. After 2 years the criteria change. The point at which you start AS is usually dependent on age and PSA. Having a 1.9 is low unless you are in your 40's but the rise to 4.4 in a year should have triggered the further investigation at that time as there had been more than a doubling, even though the PSA level was within the limit for your husband's age group. Whilst the NICE guidelines give the framework for an ideal course of action I doubt that they are adhered to because of time and budget constraints.

Let's hope that everything settles down for you now after your traumatic year, but make sure that you keep up to date with regular PSA tests.

https://www.nice.org.uk/guidance/ng131/chapter/Recommendations

The one thing I would comment on is that even though the guidelines are reviewed, a lot of the information seems to be out of date particularly for advanced prostate cancer patients.