@rotate, that is odd that you did not get a notification for your upcoming appointment. Please check your spam folder to make sure it didn't go there erroneously. Please let the scheduler know a) that you did not get a notification and b) that there is a conflict with another Mayo appointment. They should be able to help get that fixed so that you can be sure to be notified in the future and to untangle the double-booked appointments.
Not in spam. It's possible that since the estimate appeared Friday evening, the notification was not yet set. But this has happened before, and during radiation treatment, my schedule was changed quite often with no notice. I think the scheduling system should do that automatically, but apparently it doesn.t
I am planning to talk to R/O scheduling tomorrow morning - I've always had great results with them. Also with my onc team to see why the test is so soon after end of treatment.
If I understand this correctly:
Your nadir while still on Orgovyx was 0.09
Three weeks post-Orgovyx it was 0.19 (I suspect at this point, Orgovyx has not yet been totally flushed out of your system)In the 4th, 7th, and 10th month (approximately), with the med totally out of your system, your average PSA was in the low 0.60s, no doublingIn the 12th month post-Orgovyx, PSA was trending down to under 0.50
Regardless of what your actual nadir was, you're far from seeing a rise of 2.0 above nadir.
Even if you did not reach yet the ideal nadir of < 0.2, I think you are all good. If I can somewhat duplicate your experience, I will be so happy.
Congratulations. (Do update us as your PSA trends down closer to 0.2
Thank you Brother. Both my RO and my URO {and I} are happy with my numbers. Compared to what other cancer patients endure this has been an amazingly easy ride.
Stay Strong Brother
My oncologist and radiologist have not specified a schedule for PSA testing following the IMRT completed 4 months ago, but expect it at the clinic visits every 2 to 3 months. The radiologist ordered a PSA halfway through the radiation treatment, and I have taken the initiative to have monthly tests, out of pocket if required, until a nadir is evident. Then I believe the schedule will be every 3 months according to the doctors' orders.
My oncologist and radiologist have not specified a schedule for PSA testing following the IMRT completed 4 months ago, but expect it at the clinic visits every 2 to 3 months. The radiologist ordered a PSA halfway through the radiation treatment, and I have taken the initiative to have monthly tests, out of pocket if required, until a nadir is evident. Then I believe the schedule will be every 3 months according to the doctors' orders.
@overage
Some people take up to three years before their PSA hits bottom after having radiation. Getting monthly test is nice, but maybe every three months would be sufficient if PSA continues to Go down. Be aware that it can bounce around a little so don’t be shocked if it goes up a little and back down in a little over time.
My plan is 3 mo or 6 mo (per RO). I had my first 3 mo. Next in one month from now.
It's scary to get these, but then I spent years dreading PSA tests before the cancer finally, suddenly appeared. So my current approach is not to read the result on the portal until right before going in to see the RO PA. Since I had radiation, my PSA may do all sorts of things that I don't know how to interpret. So that's why I'll not look early (like I do with most med tests - look when they show up in the portal).
My oncologist and radiologist have not specified a schedule for PSA testing following the IMRT completed 4 months ago, but expect it at the clinic visits every 2 to 3 months. The radiologist ordered a PSA halfway through the radiation treatment, and I have taken the initiative to have monthly tests, out of pocket if required, until a nadir is evident. Then I believe the schedule will be every 3 months according to the doctors' orders.
@overage
Most R/Os will do a PSA before beginning your radiation treatments to get a base line.
Doing a PSA half way in through your radiation treatments is not something UFHPTI or Mayo Jacksonville does. Why? Because your prostate is getting bombarded by radiation and going through damage and irritation. A PSA would not be a gauge of how well radiation treatments success until months after treatments end to see of PSA is going down from the baseline taken before radiation.
This comes from my UHPTI R/O, Mayo R/O, and my Mayo PCP not a medical statement by me. But I had asked about PSA test prior to my radiation and was told the above.
@overage
Some people take up to three years before their PSA hits bottom after having radiation. Getting monthly test is nice, but maybe every three months would be sufficient if PSA continues to Go down. Be aware that it can bounce around a little so don’t be shocked if it goes up a little and back down in a little over time.
@jeffmarc
Let me clarify this. Since my cancer was diagnosed as high risk, I was receiving ADT some months before radiation and am continuing with that. I understood that shortens the time to a nadir to 6 to 12 months. If I were going to have to wait 2 to 3 years for a nadir I would test every 3 months.
@jeffmarc
Let me clarify this. Since my cancer was diagnosed as high risk, I was receiving ADT some months before radiation and am continuing with that. I understood that shortens the time to a nadir to 6 to 12 months. If I were going to have to wait 2 to 3 years for a nadir I would test every 3 months.
Mine was at 60 days. And PSA went from 9.0 to 11.96. (They tested too soon)
Since it dropped to 4.8 at 9 months. Felt great. Then at 12 months 6.2. It held there for 6 months. (bounce) It's since gradually dropped to 3 at 20 months.
Point being it the decline you want. But radiation without adt can be a bumpy ride.
@overage
Most R/Os will do a PSA before beginning your radiation treatments to get a base line.
Doing a PSA half way in through your radiation treatments is not something UFHPTI or Mayo Jacksonville does. Why? Because your prostate is getting bombarded by radiation and going through damage and irritation. A PSA would not be a gauge of how well radiation treatments success until months after treatments end to see of PSA is going down from the baseline taken before radiation.
This comes from my UHPTI R/O, Mayo R/O, and my Mayo PCP not a medical statement by me. But I had asked about PSA test prior to my radiation and was told the above.
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Not in spam. It's possible that since the estimate appeared Friday evening, the notification was not yet set. But this has happened before, and during radiation treatment, my schedule was changed quite often with no notice. I think the scheduling system should do that automatically, but apparently it doesn.t
I am planning to talk to R/O scheduling tomorrow morning - I've always had great results with them. Also with my onc team to see why the test is so soon after end of treatment.
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1 ReactionThank you Brother. Both my RO and my URO {and I} are happy with my numbers. Compared to what other cancer patients endure this has been an amazingly easy ride.
Stay Strong Brother
My oncologist and radiologist have not specified a schedule for PSA testing following the IMRT completed 4 months ago, but expect it at the clinic visits every 2 to 3 months. The radiologist ordered a PSA halfway through the radiation treatment, and I have taken the initiative to have monthly tests, out of pocket if required, until a nadir is evident. Then I believe the schedule will be every 3 months according to the doctors' orders.
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Helpful -
Hug
1 Reaction@overage
Some people take up to three years before their PSA hits bottom after having radiation. Getting monthly test is nice, but maybe every three months would be sufficient if PSA continues to Go down. Be aware that it can bounce around a little so don’t be shocked if it goes up a little and back down in a little over time.
-
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Helpful -
Hug
1 ReactionMy plan is 3 mo or 6 mo (per RO). I had my first 3 mo. Next in one month from now.
It's scary to get these, but then I spent years dreading PSA tests before the cancer finally, suddenly appeared. So my current approach is not to read the result on the portal until right before going in to see the RO PA. Since I had radiation, my PSA may do all sorts of things that I don't know how to interpret. So that's why I'll not look early (like I do with most med tests - look when they show up in the portal).
@overage
Most R/Os will do a PSA before beginning your radiation treatments to get a base line.
Doing a PSA half way in through your radiation treatments is not something UFHPTI or Mayo Jacksonville does. Why? Because your prostate is getting bombarded by radiation and going through damage and irritation. A PSA would not be a gauge of how well radiation treatments success until months after treatments end to see of PSA is going down from the baseline taken before radiation.
This comes from my UHPTI R/O, Mayo R/O, and my Mayo PCP not a medical statement by me. But I had asked about PSA test prior to my radiation and was told the above.
-
Like -
Helpful -
Hug
1 Reaction@jeffmarc
Let me clarify this. Since my cancer was diagnosed as high risk, I was receiving ADT some months before radiation and am continuing with that. I understood that shortens the time to a nadir to 6 to 12 months. If I were going to have to wait 2 to 3 years for a nadir I would test every 3 months.
@overage
While on ADT the PSA can stay undetectable even if radiation has not yet killed all cancer. Don’t worry about it unless the PSA is rising.
Mine was at 60 days. And PSA went from 9.0 to 11.96. (They tested too soon)
Since it dropped to 4.8 at 9 months. Felt great. Then at 12 months 6.2. It held there for 6 months. (bounce) It's since gradually dropped to 3 at 20 months.
Point being it the decline you want. But radiation without adt can be a bumpy ride.
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Hug
3 Reactions@jc76 mine didn't because he said I was too close to biopsy to get a good picture.
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