Shortest term of ADT needed for G9, non metastatic PCA?

Posted by larryf954 @larryf954, Jul 24 9:29am

I’m 69 and been on Orgovyx and Zytiga for 5 weeks; and started my 40 radiation treatments a week ago. My side effects so far have also been mild thankfully but progressing. Very mild hot flashes and significant arthritic pain in my hips. I had Gleason 9, so I’ll be on ADT for an undetermined time. I fear the side effects will become more pronounced and I want to consider stopping the ADT after 6 months. The doctors are mentally preparing me for a longer period.

Wondering if anyone has a similar disease stage profile who considered or actually stopped the ADT shorter than 18-24 months?

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

I’m also a Gleason 9 guy on orgovyv and Abiraterone. I also just completed radiation to my pelvic lymph node bed and one suspicious lymph node. I met with my oncologist yesterday. In a perfect world, I’d like to be off all ADT in 6 months. He made a convincing argument yesterday why that’s not in my best interest. The standard of care for men in our situation is 18 to 36 months of first and second generation ADT and radiation where appropriate. Men who have been on this protocol for 7, 8, and 9 years have remained progression free while studies have indicated that some men who received similar treatment for shorter periods of time experienced progression in as little as three years. This is corroborated in more detail in the book “surviving prostate cancer” by Dr. Patrick Walsh, current edition.
It’s my oncologist’s belief that if I stay on combination ADT for the full 24 months I will remain progression free for at least 7 to 9 more years, 5 to 7 of which will be post ADT. Considering how aggressive my cancer appeared to be on genomics testing, I’d consider this a great victory.

I’ve read enough to believe that 6 months is too short of a course to give me the best chance of remaining disease free; same with 12 months. I plan on revisiting the topic 18 months from now however to see what the latest studies will reveal at that time.

Best wishes for success on your journey.

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Your reply was terrific. I thank you for sharing. In today’s world where there are too many agendas I like to validate what I’m told. A little history behind my uneasiness; I have received different Gleason scores, the higher being my provider (9); another two from a local pathologist which was confirmed by JohnHopkin’s pathology lab (7). May never receive better information.

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My husband just finished two years of ADT, as recommended, in September. He was also a Gleason 9. He just got news that psa has risen above 2. We regret stopping it.

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I wish him well as he journeys forward. Your reply is very sobering. but I believe it will be very helpful.

Thanks for your reply.

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@jedtad

My husband just finished two years of ADT, as recommended, in September. He was also a Gleason 9. He just got news that psa has risen above 2. We regret stopping it.

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Respectfully, was he on BOTH first generation i.e. Lupron or ORGOVYX and second generation i.e. Zytiga or enzalutamide? What What stage was he before he started ADT and was his primary treatment surgery, radiation, or both?

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@robertmizek

Respectfully, was he on BOTH first generation i.e. Lupron or ORGOVYX and second generation i.e. Zytiga or enzalutamide? What What stage was he before he started ADT and was his primary treatment surgery, radiation, or both?

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Before radical prostatectomy he was diagnosed as stage 3b. They said it was not in lymph. Then after surgery they found it was in lymph on both sides of prostate.. I think 7 nodes cancerous. Does this make it stage 4? We have never been told and I did not want to ask at the time. 3b just sounded so much better. They proceeded with radiation and ADT. We had to switch doctors several times for different reasons all out of our control. Each one had a different opinion so he has been on several different regimens, I lost track. All I know is he has been on horomone therapy for two years (shots) testosterone had been 0 for all of that time. It is still very low so they do not understand why his psa rose so quickly. PET scan Aug 5th.

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@larryf954

I wish him well as he journeys forward. Your reply is very sobering. but I believe it will be very helpful.

Thanks for your reply.

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He has been on Eligard. He doesn’t think it was a combination.

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@jedtad

Before radical prostatectomy he was diagnosed as stage 3b. They said it was not in lymph. Then after surgery they found it was in lymph on both sides of prostate.. I think 7 nodes cancerous. Does this make it stage 4? We have never been told and I did not want to ask at the time. 3b just sounded so much better. They proceeded with radiation and ADT. We had to switch doctors several times for different reasons all out of our control. Each one had a different opinion so he has been on several different regimens, I lost track. All I know is he has been on horomone therapy for two years (shots) testosterone had been 0 for all of that time. It is still very low so they do not understand why his psa rose so quickly. PET scan Aug 5th.

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Thank you for your thoughtful reply. Sorry for all that you’re going through. As I understand it from a patient’s perspective if lymph node involvement is limited to the pelvic lymph nodes he still could be stage 3B N7. If lymph nodes are involved that are outside the pelvic region then it could be stage 4.

Just my opinion, but I think that continuation of care is critical when aggressive cancers are involved like what I have and what your husband has. Being treated like a hot potato is not beneficial to outcome.

Just my opinion here, but I think it’s critical that your husband received treatment at a center of excellence not just the local community hospital. Following is a link that lists centers of excellence for prostate cancer treatment. If you’re unhappy with the care that he’s receiving, I strongly suggest that you consider seeking care for him at the closest center of excellence near you. Might be time to get a second opinion!

Good luck on your journey together. Reach out to me privately if I can help answer any questions for you from my experience.

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@jedtad

He has been on Eligard. He doesn’t think it was a combination.

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And, ty for well wishes. My advice is to stay on it as long as you can.

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@jedtad

Before radical prostatectomy he was diagnosed as stage 3b. They said it was not in lymph. Then after surgery they found it was in lymph on both sides of prostate.. I think 7 nodes cancerous. Does this make it stage 4? We have never been told and I did not want to ask at the time. 3b just sounded so much better. They proceeded with radiation and ADT. We had to switch doctors several times for different reasons all out of our control. Each one had a different opinion so he has been on several different regimens, I lost track. All I know is he has been on horomone therapy for two years (shots) testosterone had been 0 for all of that time. It is still very low so they do not understand why his psa rose so quickly. PET scan Aug 5th.

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I have found PCRI.org has videos that contain invaluable information. I think of them as they frequently mention centers of excellence. They have a helpline noted in most of their videos where you can call for more information on closest locations

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