Gleason 4+5, up from 4+3
It's day 85 after surgery. I'm feeling fine. But with my first follow up blood test in 2 weeks I went back and read the post-op report from the surgeon. I was Gleason 4+3 after the biopsy in late July, but 4+5 during the surgery in November. Nothing I can do now except wait for the next test, but I'm preparing myself for bad news. Gleason of 9, Group 5, has me concerned there are more challenges ahead. Cancer may be in a different location but it's starting to mess with my head.
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Are you saying that you were 4+3 from the pre-op biopsy and when they removed your prostate the post-op biopsy of the prostate was 4+5? It's not unusual for the removed prostate to test higher, the biopsy may not have been accurate since the cores that are biopsied are random samples.
Certainly if you had a prostatectomy you are not a Gleason anything anymore, now they would be looking for elevated PSA in your blood. All that said, and if it is the removed prostate showing 4+5 I'm pretty surprised they haven't requested a PET scan to see if it has metastasized.
I know I was 3+4 and Stage II from the biopsy, upgraded to Stage III after surgery when the removed prostate was tested, but nobody was surprised that was the case under any circumstance but particularly with a 0.68 Decipher test.
Cancer may also NOT be in a different location. Read the report and see if there is any mention of bulging or broken capsule (EPE), seminal vesicle involvement, positive margins or nodes. It’s all in there.
At the very worst your surgeon might want to have you consult with a Radiation oncologist if there are some negative/suggestive findings in your report.
If you do need further treatment, mentally it’s a real bummer but better to know it now and not spend the next few years agonizing, projecting and making yourself sick every time you have a PSA….that’s what I did and it totally sucked all the joy out of my life. Best
Phil
Thanks Phil. That helps
There is no next test of your Gleason score. You are a Gleason Nine, it won’t change because they have analyzed your prostate, and that is what they found in it. No future tests evaluate your Gleason score.
You need to realize that you do have an aggressive form of prostate cancer. Hopefully you’re working with doctors who are In a center of excellence where they can discuss your situation and come up with the best solution.
It is very likely that your cancer will come back with a Gleason nine. Have they discussed putting you on ADT, That may be needed to extend your life.
It could be they wait until your first PSA test after surgery to see if your PSA has dropped Significantly. It should be below .2 and even < .1 (undetectable). Mine was < .1 7 weeks after surgery. If it does not drop that low, then they’re probably is something else producing PSA. Salvage radiation may be something they discuss with you.
You can have a long life if you get good treatment.
I was 4+4 post-biopsy and 4+5 after surgery. My first PSA three months after RALP was undetectable but 0.5 at six months post-surgery. This PSA surprised and disappointed me greatly as I as not prepared for such a drastic change in only three months. My urologist immediately referred me to a radiation oncologist and we got started on next steps, which included a PSMA and six months of ADT. The PSMA, fortunately, did not detect any cancer so my radiation treatments were focused on the former prostate bed and pelvic lymph nodes. That was all completed two years ago. My PSA remains undetectable after these followup treatments. I am still apprehensive about each new PSA but cautiously optimistic about the future.
Many thanks for those insights. My first discussion with the urologist after my initial post-op chat is in 3 weeks, after my PSA test in 2 weeks. I'll ask about ADT. It's a shock to the system that I first heard of the possibility of cancer less than 7 months ago. This forum has been very helpful.
4/3 , then up to 4/5 after biopsy of prostate is not the best news BUT , not the end of things either . SO many corrective things now. Read up on FenBen3-4 times a week . I know plenty of people that have taken it with permission of Uro too ! Seems to help. Its a old drug repurposed for various things now . Talk to Dr about it and ask to try it . No Prescription necessary. also you probably need a PSMA-Pet scan. At least a up to date contrast MRI at this point. Keep active ...I travel a lot and hike with my dogs , also go to sauna quite a bit . You also need a group of guys to talk to ! Very important to talk about stress ! After my surgery I was 3+4 , prior to surgery I was 4+3 . But also they found a 2mm breach that just happened they say , so surgery at 4.0PSA was right move as 2 mm breach was not there 3 weeks prior during MRI . Very small but a concern I have ! God Bless brother ! Im here for you ! James on Vancouver Island !
I would have thought they would have performed a PSMA Pet after the MRI or Biopsy which they did with me. My biopsy was Gleason 9 grade 5. Had it removed then at 18 months my psa doubled then doubled over the next 6 months to .22. Currently doing ADT and salvage radiation as something was left behind in my bed. Us 9's have to keep up with it and not let up on the doctors. I would ask if there were any dirty slides from your surgery. Margine or bed area. You want a hard answer on that. My urologist lied to me by omission as far as I am concerned, as he didn't disclose the positive slide. The RO told me about it when I went in for initial consult for salvage radiation. I was pissed as I emotionally stewing over my rising psa without any explanation for 6 months. Without anything to wrap my mind around. When I went back to him for my Lupron shot and psa test (.2400) 3 months later I drilled down with pointed questions and the jerk actually scoffed while I was asking a question. At that point I somewhat verbally jumped him. And then got my questions answered. Will finish ADT and rad and then find another provider. .22 triggered a psma pet which was clear, then adt and 25 sessions of radiation 5 days a week with 19 more to go. It is a lower level of radiation and so far no side effects. 1 month on Lupron with minimum side effects. This isn't the end. Live for today. Seek answers. Take action. Best of wishes going forward.
Similar to my situation as a Gleason nine. Prostate removed in 2023, three months later rising PSA, pet scan negative, then salvage radiation for 2 months with 6 months of Luprin, PSA is rising again. after Luprin wore off. A second PSMAPET scan is negative. Using a different type of scan now to try to locate it as my PSA approaches 2.0. Still hopeful it will now show up And we can attack it directly where it’s located. The salvage radiation was a guess. Now if we can see it we can zap it.
Hopefully, you are getting a FDG pet scan, That can detect prostate cancer that does not produce PSMA. Around 10-20% Of prostate cancer patients have that problem.
The NCCN guidelines Say that if somebody has a Gleason nine, they should be on ADT for at least 18 months if not 24 months. You’re getting off of it after six months was not following standard of care, Hopefully, you can get back on it and have many years, It works for most people.
Somebody in your situation usually gets Lupron and Zytiga, after radiation. . I’m working with one guy right now that has exactly that, And I know a number of other people who ended up with that treatment. Sometimes they Prescribe a lutamide instead of Zytiga. I’m just telling you this because that’s probably the things you’re going to be talking about.
You might wanna ask for a decipher test to find out how aggressive your cancer actually is how fast it’s supposed to metastasize. Of course, you already know it seems to move quickly, Ask your doctor if it makes sense.