This is a follow-up to a post I made in January of this year. I was diagnosed at age 50, Gleason score 3+4 (10% pattern 4), highest PSA of 10.1, high-risk Decipher 0.84, PI, and some evidence of ECE. I was PSMA-negative. I started Lupron and was treated at UCLA in late October 2023 with SBRT on the MRIdian. My three-month follow-up PSA test showed a drop to 0.5, which was expected to have decreased more than it did. My RO at UCLA (Dr. Kishan) and my MO (Dr. Lam at Prostate Oncology) were considering adding Zytiga and extending ADT beyond the initial six months.
Fortunately, my PSA drop began to accelerate in February 2024, and by June, it was at 0.08. My doctors decided against adding Zytiga but have kept me on monthly ADT. I'm tolerating it well, with no weight gain or severe depression, but I don't want to take it longer than necessary.
My doctors have indicated that since my PSA has dropped below 0.1, I can consider stopping ADT at the one-year anniversary in October. However, I've read studies suggesting that eighteen months may be the superior duration. I've been paranoid over the Decipher score and don't want to prematurely end the ADT unless there is a negligible benefit beyond 12 months for my risk level.
I'm interested in any insights others may have regarding 12 months vs. 18 months of Lupron.
I appreciate any feedback!
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sptill72
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I'm not certain of the specific margins. I was the last patient to get the Viewray before they temporarily shut it down. Dr. Kishan preferred having me receive the treatment on the Viewray due to the better margins. I know they gave a boost to the lesion.
The reason I asked is that 4mm margins might give you more confidence in the 12 month ADT. There really are no data that can help you decide, it's just a matter about how you feel about it.
Thank you TA. I can ask at my next follow up w/ UCLA and keep it in mind when deciding. I'm happy my PSA finally dropped below 0.1 but I'm hoping it continues to drop some more. I'm receiving monthly PSA tests and it's been at 0.08 for a month now.
Dr. Kishan confirmed the margins were 2mm. He is recommending I stick with the 18 months of ADT due to my age and having an aggressive tumor (Decipher). He also provided me with this link jamanetwork.com/journals/ja....
His analysis shows that 2 years is required with external beam, but with the higher dose of SBRT (which is closer to the HDR-brchy boost therapy dose), maybe 18 months is enough.
Thanks for the link. My understanding is that SBRT is similar to HDR boost. I guess I need to accept 18 months and hopefully I won't need it again in the future.
Tough call but like Tall Allen said “no data to help you decide”. So that brings you full cycle to how you feel about the potential risk.
With that in mind I can only tell you what I did and you need to feel comfortable in your OWN decision. I was faced with 6 or 12 months of ADT. I choose the 6 month option. Two months prior and 4 months post radiation.
This allowed me some time to see how the ADT was going to affect me and more importantly how my PSA was going to react after the radiation. How fast and what nadir level I was going to achieve.
My nadir has been 0.05 and has so far stayed that way. My plan at least in my mind is to “watch and wait”. I can always restart the ADT if I become uncomfortable with how things are progressing.
Just one person’s prospective on how I handled the decision making so far. I am comfortable with my situation moving forward. I might add that you have some great doctors looking after you and your case.
Thank you for the feedback. I have a couple more injections before I have to decide. I'm hoping my PSA will continue to drop in that time. You're right about my doctors! I travelled to facilities all over California before finally selecting them.
I thought Dr. Kishan had published a paper that looked at the optimum length of ADT, and I think that he concluded that 12 months was an optimum duration. Perhaps it was a YouTube lecture...
BTW, my numbers are almost identical to yours. I recently completed 5 session SBRT here in Albuquerque at the UNM Cancer Center. I had previously consulted with Dr. Kishan.
I'm currently taking Orgovyx, and transdermal estradiol (E2) to treat side effects. Plus, Dutasteride (which I may discontinue, because my DHT is now very low on Orgovyx).
You may want to consider asking your MO to order an AI analysis by artera.ai. It costs $5000, but Medicare covered it 100%. Their AI program will analyze your biopsy slides, plus your clinical data, and then predict your 5-yr and 10-yr metastatic-free survival probability, with high confidence. I also had a high Decipher score (> 0.8). The Artera analysis is a Level-1 analysis (the highest level possible).
Thank you for the response Bob. I'll ask my MO about the Artera tomorrow since I have an appointment with him. I'm not on Medicare yet (51) but I do have good insurance. I'm still confused over the Decipher score. My Gleeson was 3+4 (initial was 3+3 at regional hospital then upgraded at Stanford). There was even talk about AS until the Decipher score came out. I saw Dr. Scholz on the PCRI channel mention Decipher is his least favorite of these types of tests.
Odds are that your MO hasn't heard of Artera.ai. It's pretty new in the past 2-3 years. I think it's the best predictor out there now. If you send me an email request to:
janebob99@lobo.net
then I will send you a copy of my Artera.ai report, so that you can see its format, etc.
I was high risk - G 4+5, no involvement outside gland, clear PSMA. 66 yo at time. EBRT, Brachy, 18 month Lupron. High risk? Likely 18 months is a better choice. Hang in there.
Thanks for the feedback. I spoke to both my RO and MO this week, and they both seem to agree that 18 months is the safer bet based on my age and Decipher score. I was originally considered favorable intermediate, but the Decipher score raised concerns (30% chance of mortality in 15 years, which would put me at 65). My PSA also didn't drop as rapidly by the three month follow-up as they would have liked, although it now seems to be in line with expectations. Based on the doctors' opinions and the feedback I'm receiving here, I think it's better to endure ADT longer now if it can improve my odds for the future. I hope you're doing well post treatment!
I would trust Dr. Kishan's recommendations. I consulted with him, too.
You should also consider estradiol "add-back" to replace the natural estradiol that will be lost during ADT. Adding back lost estradiol has a host of benefits, including reducing or eliminating hot flashes, reducing or eliminating osteoporosis, less fatigue, better glucose control, and lower cholesterol levels. Your PCP can prescribe estradiol patches or gels. Both have pros and cons.
That sounds like a good plan. 15 months post-treatment I'm doing dang good. Even after my T bounced into normal range it took some time for my aerobic capacity to get back up there. But climbing stronger than ever, lifting, mt biking, back-country skiing. Of course getting older (68) is making things harder - but better than the alternative! Best of luck.
Slightly older 79 and noticed the same thing. My aerobic capacity took awhile to get back to my normal range. MO attributed this to effects of radiation. Back to normal now.
PS Still skiing just not as fast or for as long but I can say the same for a lot of things as I age.
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