If I do, or if I don't...

[Jvaughan0]

PSA was somewhere between .4 and .6 in October, increasing about .1 each summer month. Prostate removal in 2014 and prostate bed radiation in 2017 kept PSA undetectable. Began 24 month Lupron in October followed in November with whole bed radiation/boost to hotspots on two lump nodes (identified by PSMA scan) which was completed the second week in January. Last week my PSA was 1.7. My MO said retest in September, and that testing before then only creates anxiety. Not sure he understands the nature of anxiety. Im tempted to test every month or two. Any thoughts from the group?

[tango65]

Discuss doing lupron plus abiraterone for 2 years.

urotoday.com/conference-hig...

[Jvaughan0 in reply to tango65]

I have. My MO thinks it is too aggressive for the moment.

[tango65 in reply to Jvaughan0]

I would get a second opinion. If I understood correctly your PSA remained about the same after the radiation and the Lupron. One has to remember that PSMA PET/CT scan can not detect anything smaller than 4 mm.

[Jvaughan0 in reply to tango65]

My PSA dropped from 4.2 before the treatment to 1.7 three months after treatment.

[treedown]

Seems like a long time to me but only because I haven't gone longer than 3 months between PSA tests since my treatment started in 2019. He must feel pretty confident nothing unforeseen will happen in that time. That said if you get more anxiety waiting than get a monthly test his reasoning is misguided and you should take more tests.

[Jvaughan0 in reply to treedown]

I either put cancer out of my mind for six months and work to limit the side effects of lupron, or monitor the numbers to see if they raise or fall. If they fall; that's good. If they climb; well, I push my MO for ADT+. This MO is at the top of his specialty, but still this cancer is in me, not him.

[treedown in reply to Jvaughan0]

I agree, you are in control and should make the decision that suits you best. My MO is agreeable and I recently went from 3 months to 1 month because I am keeping a closer eye on it. I am off ADT now and my radiation finished 2 years ago. I am probably OK waiting for every 3 months but feel better about monthly and thats what I am getting. After 3 monthly tests I may feel more comfortable going back to quarterly tests. Time will tell.

[Schwah]

I’m like you. I get more anxiety not testing monthly than testing monthly. I also think if you’re taking Lupron you should definitely add Zytega. Not much added in side affects and huge price difference in efficacy by doing both early. You need to discuss pros and cons and at the end of the day only you can drive your own ship

Schwah

[Jvaughan0 in reply to Schwah]

I asked my MO about adding it last summer. He felt it was not needed. I think I will retest PSA in a month. Frankly, it has always been hard to understand my MO's reasoning, but I selected him based on his outstanding knowledge of PCa treatment.

[Spyder54]

Your “whole bed Radiation/Boost to hot spots”, clearly is killing some PCa cells. Its a known fact that dying cells give off max PSA ! My RO at MSKCC said expect high PSA readings. Wait 3 months for first PSA test and know that radiation will kill cells 18 months out. Stress kills us humans. Be in the present. Breathe deeply. Spring has sprung. You are on top of this. Your journey continues.

Best of luck my friend,

Mike

[Jvaughan0 in reply to Spyder54]

I'm bothered by the blurred lines of treatment and of the disease, conflicting indicators, and an unending emotional mixture of hope and dread. Mentally I felt at peace each day I went for radiation, feeling I was in the fight. The battle is in the wait, the twilight of what to do next and who to listen to. I have down periods of angry frustration. This moment is one of those times. I know I will regroup and continue; not because I'm a warrior, but because I have no other choice. I had rather stand and fight the demon than cower on the edge of submission.

[Magnus1964]

Your PSA is low so don't panic. I do think you should have your next PSA sooner.

[Jvaughan0]

I am not a religious person, but I pray for you too in my own spiritual way. You have been a source of strength to me over the years. I think I have made up my mind to test again at the end of the month and wait a month and test again to see how the PSA moves. If it moves up, then I ask my MO for Zytiga.

[j-o-h-n]

Anxiety is a killer...............Just live your life..............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/27/2022 12:41 AM DST - Holy Easter

[monte1111 in reply to j-o-h-n]

What? Me worry?

[j-o-h-n in reply to monte1111]

Over 90% of the things you worry about, never happens.

Which proves....Worrying really works.....

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 04/27/2022 12:58 PM DST - Holy Easter

[CAMPSOUPS in reply to j-o-h-n]

youtube.com/watch?v=4ikaMhX...(Not working as expected?)

[j-o-h-n in reply to CAMPSOUPS]

Thank you for sending me my ex-wife's video (she's actually looking prettier).............

Good Luck, Good Health and Good Humor.

j-o-h-n Sunday 4/17/2022 6:46 PM DST - Holy Easter