A different report
Hello; as I scanned the posts for today’s reading I thought it’s a good time to share my status. I just returned from my MO and I was told I can stop my ADT which has been Orgovyx, Zytiga and Prednisone. It’s been a long six months and I was crazy nervous to learn whether I could stop or need another 12-18 months. I also had IMRT; 40 fractions with a high 86 grays.
My staging was generally high intermediate and one of the 3 biopsy reports I received showed a GL9 so stopping at 6 months wasn’t predetermined. On the positive side my PSA went to < .014 after 3 months on the ADT and stayed there till now.
Thankfully this chapter is closing for now and I hope it’s the last chapter in my prostate cancer book. I know though that the risk will be present for the future journey to take a negative turn but for now I’m thrilled.
I hope this gives hope to others battling the disease
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With a Gleeson nine and only six months of ADT there really is a good chance of your cancer coming back soon. Hopefully, you’ll get PSA test no less than every three months. This is something that’s discussed a lot at Ancan.org Advanced prostate cancer meetings. They’ve been around for 15 years and have found that people who don’t go through the NCCN recommendations usually have recurrence.
ADT does reduce your PSA a lot, But that doesn’t mean it will stay there. I know that for me, stopping ADT, Or even reducing my second Drug doesn’t work. I have a Gleeson 7 4+3. When I switched from four Zytiga pills a day to three, my PSA went from .2 to 1 in 18 days.
Good luck.
The GL -9 was one of three tests the other 2 tests reported GL-7s. The protocol is PSA testing every twelve weeks for the next year. The decision was made by the Tumor board at Sylvester/UM; and I trust they considered all of the diagnostic test inputs in arriving at the recommendation. I have to say, IMHO, that your prognosis should have been considered the delicacy of the different staging inputs.
Your Gleason score is always figured by the highest number. Some people who have sevens in a lot of their prostate have nines in other areas. Someone needs to have a prostatectomy to really find out what their Gleason score is, based on the whole prostate, but they seem to have hit the 9 spot at least once in your case.
Good Luck
The 3 different biopsy readings used the same cores. The first one showed 6s and 7s. The 2nd reading showed the same except for one core that instead of a 7 showed 9. The third biopsy which was analyzed by John Hopkins showed the same as the first. Back to my initial intent in posting the 9 was the thorn in the picture of an intermediate high risk, though significantly caused caution in stopping at 6 months of ADT. As with all participants here my assessment was specific to me not a protocol of how to handle 9s. Hope this clarifies it for you
Larry , all positive news . Thrilled for you and yours . Is 0.014 you mentioned the bottom scale of PSA readings . I am at 0.042, roughly on my last PSA . Its low , But I have had surgery 3 years ago, then Salvage radiation of 22 sessions about 2 years ago.I Feel good , with no ill effects . Never been on ADT and the Drs say that with my G 3+4 I dont need it. At 0.042, Its not unreadable . Here on Vancouver Island its 0.008 is unreadable. Do you think I have much to worry about ? Your doing great and with your ADT stopping by Dr's advise , this means they are positive I gather ? God Bless you ! James on Vancouver Island .
I believe the 0.014 is the lowest they can measure on the ultra sensitive testing scale. The actual reading is < 0.014ng/mL. My knowledge doesn’t allow me provide feedback on your question. However I can say that my MO expects my PSA to rise when I stop taking the medication. Where it will plateau is unknown but if I were at a steady level of 0.042 I think that would be great. I leave that to the future and my Dr.’s ongoing advice
Best wishes to you!
Must admit it is very strange that someone would say it’s a Gleason nine and two other people say that it’s a Gleason seven.
I would be real suspicious of the guy that said Gleason nine because there is such a major difference between a nine and a seven.
Sounds like the treatment you’re getting matches what a Gleason seven would require.