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Gleason 9 after RP and subsequent PSA anxiety.

User
Posted 10 Jul 2017 at 15:55

Hi All,


Havent posted for a while but glad to say I eventually came out of the RP aftermath and ditched the catheter after 8 weeks.  This after post opp leakage internally within joint connections.


My first PSA after 6 weeks was 0.02 and everything appears to be hunky dory, apart from some stress incontinence and being dead from the waste down from a sexual perspective.  All that aside I am told I have been very lucky as the cancer found by pathologist was confirmed as very aggressive Gleason 9.


I should be overwhelmed and happy that I now have an undetectable PSA but cant stop myself reading stories that Gleason 9's very rarely achieve full remission - even reading a Havard University study which puts my chances of reoccurence as 85% in the next 5 years. My tumour was confirmed as contained and border line T2.  This as in one area it was close to 1mm from touching the margin.


Question: am I flapping over nothing with this PSA anxiety, because I was diagnosed Gleason 9 or is there some truth in what the internet tells you on the subject of potential reoccurence.


I am not recieving anymore treatment other than that to deal with the ED, but I am half way through a rehab course which touches on all things linked to surviving prostrate cancer. One aspect of the course is other treatments and salvage radiotherapy, which again pulls my mind back to the fear of reocurrence.


Would appreciate anyone in a similar position getting in touch i.e Gleason 9, PSA 6.9, cancer contained, currently post RP with PSA anxiety.


 


 

User
Posted 11 Jul 2017 at 00:08
Tony

We're very similar. I was T3b and Gleason 9 with positive margins. Six months post op and my PSA has stayed at 0.014. My oncologist has said it is likely that microscopic traces were left behind. She suspects I will need radiotherapy and later hormone and chemotherapy. I think that is based more on the positive margins rather than the Gleason 9, but I'm not expert enough so might be wrong.

Whatever the case, one thing I have learned from this forum is that many men are living for a long time, even Gleason 9s, and so I aim to be around for a long time yet.

Ulsterman
User
Posted 11 Jul 2017 at 09:49

Hello

I'm in a similar boat. Gleason 9, PSA 22 T3a, and post op results were positive margins and spread to one lymph node. PSA test at 6 weeks was 0.08 As such, I then got 33 zaps with RT and Bicalutimde 150mg for 2 years. Will it work? Who knows, but it seems my best option. My thinking is that I have tried what I can, the rest is down to chance. I don't intend on burning myself up about what may or may not happen as it is now out of my hands and only the future will provide the answers. In the meantime, I'll enjoy the present!

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User
Posted 11 Jul 2017 at 00:08
Tony

We're very similar. I was T3b and Gleason 9 with positive margins. Six months post op and my PSA has stayed at 0.014. My oncologist has said it is likely that microscopic traces were left behind. She suspects I will need radiotherapy and later hormone and chemotherapy. I think that is based more on the positive margins rather than the Gleason 9, but I'm not expert enough so might be wrong.

Whatever the case, one thing I have learned from this forum is that many men are living for a long time, even Gleason 9s, and so I aim to be around for a long time yet.

Ulsterman
User
Posted 11 Jul 2017 at 09:49

Hello

I'm in a similar boat. Gleason 9, PSA 22 T3a, and post op results were positive margins and spread to one lymph node. PSA test at 6 weeks was 0.08 As such, I then got 33 zaps with RT and Bicalutimde 150mg for 2 years. Will it work? Who knows, but it seems my best option. My thinking is that I have tried what I can, the rest is down to chance. I don't intend on burning myself up about what may or may not happen as it is now out of my hands and only the future will provide the answers. In the meantime, I'll enjoy the present!

 
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