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Anyone with higher Gleason (8/9/10) and had RALP surgery?
I understand doctors are saying that cancer is confined based on DRE/MRI/Bone Scan/Pet Ct however all the stories I’ve read states, that only after surgery true picture is confirmed.
As prostrate pathology can confirm that Ca has not spread outside e.g. node, body part etc. and based on the post-surgery PSA further treatment plans are decided.
This proves that before surgery urologist/oncologist/surgeons are only kind of trying to guess what’s best for you unless they have found something on MRI/other scans, which might lead them to avoid surgery.
What I am trying to mention here is only post-surgery outcome can confirm what you are dealing with? Biopsy is kind of view which can show false negative or positives for high Gleasons where the report is showing its confined.
Also I’ve not able to find a single story where there is Gleason 8-10 and after surgery its been confirmed there are no positive margins.
Then why all the Surgeons emphasise to get surgery done when this is not going to cure and you would need further treatment, is it just to make sure ca has spread outside in lab? Which was not captured in any of the scans or tests?
What I’ve read shows that post surgery shows positive margins for all the surgery cases for high grades and further treatments are required. Not a single case where surgery done and psa goes undetectable.
I don’t want to sound negative however I’ve my RALP in few days and I think this is my only choice based on options available and I must say for higher Gleason there are not many options.
Jack; You might use this site in more detail - I wouldn't want to give false hope as a high Gleason is never good news - BUT - never give up all hope! I just did some browsing on the story page and there ARE good results from surgery with high Gleason scores. I would say ten years and still "undetectable" qualifies as a good result with a Gleason "9". Just one story I looked up. Catch it in time and even the most vicious monster can be excised! Nerve sparing - sexual function is VERY disturbing to loose, however, so is life! You can live life without sex, you can't have sex without life! With such a high Gleason, I would opt to error on the cautious side. Best wishes! we are all pulling for you! Jon. R.
I'd reinforce what Jon writes. I'm a Gleason 9 with nine years [plus survival and my onco reckons another 10 is quite possible, pretty much normal life expectation (I'd be 83 then). I've had both bladder and prostate removed. Be positive, never give up hope and make that chronic condition your slave not your master.
I'm a Gleason 9 who has had surgery, radiotherapy and 30 months of hormone therapy. I'd like to reinforce the previous messages about remaining hopeful, being positive and valuing life. Sexual function is important but a Pca diagnosis puts things into perspective. The past 4 years have sometimes been difficult but have also been some of the best years of my life.
I had pain in my bladder area and been for ultrasound, everything is fine.
As far as treatment is concerned all depends on first psa value if its <.2 then I will wait for 2 months for recovery and then start radiation however if its more than that then radiation in 3-4 weeks that will give more time to recover from surgery or if more time is needed adt injection.
However all based on psa due in 2 weeks time (6 weeks in total).
Your question is a good one. You can go to: https://www.mskcc.org/nomograms/prostate/pre-op. You will find that you have around a 99% chance of having extra capsular extension with your gleason 9. So the real question is, Will surgery improve survival? Studies have shown that you improve your survival apx 3% if you have surgery first. You have to decide if that 3% is worth it given the chances of additional side effects. You will very likely require radiation and hormone therapy down the road to maintain control of your cancer.
Your urologist should have told you this and I am disappointed that most don't.
One of my pet peeves is urologist saying that they are treating you with surgery "with curative intent". What does that mean if 99% of gleason 9/10 guys recur.
Keep in mind that you can still live a long time with the addition of systemic therapy.