Hi af1001 - it seems I missed your introductory post back in March. You've found already some of the most knowledgeable folks here, so let me just welcome you. I've added you to a thread focused on those of us facing these high/very high risk diagnoses. You're in the G10 group there. This roster is to provide some forum names and links to their initial posts for others in a similar situation. Here's a link to that thread:The Gleason 9 Crew -- Part 2, continued.
Back in 2013 my ADT began before radiation therapy, about
2 months. During that time, we were watching for the PSA to drop to less than 0.5 before starting RT. Mine seemed to be falling but not fast enough, and we added Casodex to the Lupron, so I went on "ADT2".
The next PSA check was after RT, and it was undetectable as hoped. I stayed on ADT2 for the whole planned 3 years, commonly suggested for such cases at the time (though ADT2 is arguable vs just ADT). There has been discussion about
2 vs 3 years, and lately it seems 2 years has become more accepted (actually more like 28 months as described in this thread). If you include the initial 4 months (2 before RT, 2 during RT), mine would be most precisely described as really 34 months from start through "release" of ADT2 (May 2013 through March 2016).
the 2 year mark, I was protesting to my MO. She said if I could tough it out another year she suggested I do so. Two points: 1) We'd rather find out in 10 years that 3 years was too long, rather than that 2 years was too short, and 2) Length of hormone therapy in breast cancer is a hot topic too, but they're discussing how much longer
, not how much shorter, they should do!
All of this was part of my primary therapy with curative intent.
The side effects of ADT are so onerous that we males find it very difficult to live with, considering what it does to us.
You'll find that most studies have very
few G9-10 cases, so applying their generalized "high risk" results to our specific situations is a stretch. There aren't enough of us to draw statistical conclusions in their studies, so they lump us in with other cases saying they have similar risk profiles (like PSA > 20, any
cT3/T4, or G8-10]. I don't really like that, since we know that G8 are lower risk than G9-10 due to lack of the rogue Type 5 cells. Similarly, I find it's hard to accept that a cT3 G6 is similar risk to a G9, but that grouping would say so. It just blurs things too much, making the results of such studies hard to apply to us.