ADT vacation update

[fireandice123]

I had a follow up with my MO. I’ve been on an ADT vacation for approximately 7 months. My PSA level is now 0.9 from a 0.1 nadir and my testosterone level is 576. I still have my prostate and a PSA rise was expected as my T level rises. The question is whether the rise is due to my rising T level or an uptake in the cancer. I’m scheduled to have a PET- PSMA scan in a couple of weeks to see what’s what, assuming my insurance is cooperative. More to follow ….

[treedown]

No radiation or surgery correct ?

[fireandice123 in reply to treedown]

I had 20 sessions of RT about 2 years ago.

[treedown in reply to fireandice123]

Noted, I think you need to see what the PSMA scan says but your PSA is still relatively low so insurance may deny until you hit nadir + 2 which is the standard for recurrence but maybe not with bone mets at dx. Was your RT curative or just to debulk your gland? Let us know about the scan if you don't get approved or the results. I may be in a similiar position soon.

[fireandice123 in reply to treedown]

The hope is that the RT is curative to some degree though I realize an absolute cure is unlikely.

[treedown in reply to fireandice123]

Hopefully, that's what they achieved. Mine was also with curative intent but I had more radiation. I have read that the radiation can have fluctuations for up to 2 years so being off ADT its feasible that is what your seeing. I guess if they can get insurance to pay for a PSMA scan there's no harm. I asked about scans and my MO said pretty much only if I had symptoms or increases in PSA. Haven't had either yet but its only going on 6 months off ADT for me.

[58Willys in reply to treedown]

At a PSA of 0.6, CT and bone scans found a metastasis on my L1 vertebrae.

[treedown in reply to 58Willys]

How big was the metastes?

[58Willys in reply to treedown]

This is what the results said. ( May 2021 ) "Intense radiotracer activity localizing to the right posterior elements of the L1 vertebral body corresponding to sclerotic metastasis seen within the right posterior aspect of the L1 vertebral body extending into the right pedicle and transverse process of L1 on CT. " I had no pain with this or the one that was found on my left ilium in 2019. My PSA was down to 0.3 in Nov 2020 after radiating the spot on my ilium in July of 2019. In May 2021 it rose to 0.6. I asked my MO about a PSMA scan and she suggested we try the CT and bone first. I started Orgovyx in July 2021 and radiated the L1 in August 2021. I stopped the Orgovyx in Jan 2022 after 6 months, and my PSA is <0.1 as of 2 weeks ago.

FYI, my journey started in 2014 with a PSA of 5.2 and then biopsy showed Gleason 7 (4+3) in 6 of 12 samples. My prostate was radiated and my PSA was <0.1 for 4 1/2 years until it rose to 3.9 in Jan 2019 and the spot on my ilium was found.

[treedown in reply to 58Willys]

You have definitely been at this longer than me and the OP. We are both dealing with the back side of our primary treatment. I understand why you would get more frequent scans at this point. I hope his insurance oks the PSMA.

[58Willys in reply to treedown]

Thank you!

[treedown in reply to 58Willys]

Did you have any pain before your scan or did your Dr arrange the scan on their own?

[6357axbz in reply to fireandice123]

If you had 20 sessions of RT to your prostate that seems inconsistent with your statement, “ I still have my prostate”

[Hidden in reply to 6357axbz]

I have a prostate still after 8 wks imrt?

[6357axbz in reply to Hidden]

I had 28 session IMRT to prostate. Debulking. Three years after Zero PSA activity from what ever is left of that gland. I understand the RT was successful. What’s left can’t be called a prostate.

[Hidden in reply to 6357axbz]

A lump of coal then

[treedown in reply to Hidden]

My RO called it scar tissue.

[Hidden in reply to treedown]

Great song ! Red hot chili pepps

[Hidden in reply to 6357axbz]

Me too 28

[maley2711 in reply to 6357axbz]

Nevertheless, with RT and not surgery, a man still has a prostate as far as I understand.....yes, GREATLY diminished !

[Hidden in reply to maley2711]

😳

[6357axbz in reply to Hidden]

If debulking was the goal and RT was used as an alternative to RP that I would say you no longer have a prostate. I should add I had active cancer in 12 of the 12 sectors found in biopsy.

[Hidden in reply to 6357axbz]

I was 12 for 12 and t-4 my prostate exploded with pc tumors

[Longterm101]

I was on the same path as you. My psa rose slowly. Just got my psma scan and had a meeting with my MO. I now have bone Mets and lymph nodes Mets. Try to get the psma scan so u can see if the cancer is spreading. Good luck

[Hidden in reply to Longterm101]

I’m sorry about that! 😩

[Longterm101 in reply to Hidden]

Terrible journey

[fireandice123]

I have the fear that I’ll be the same situation. The PSMA scan can show tumors that are smaller than the CT and bone scans can show. I have a bad feeling about insurance approvals. Before I had RT my MO tried to get approval for a PET Axumin scan. No luck so we settled on CT and bone scans again which were approved. Then the insurance company initially refused to pay for the RT. They finally did after I went through 3 rounds of appeal.

[Hidden]

It’s as easy as 123..sure? This APC really is like fire and ice . We get burned or frozen out with no t. I’ve been on constant ADt 7 yrs a pill form Tak-700 stopping adrenal t . I hated Lupron and did the ol chop chop in 2017 . No t is a bitch . I know why guys want to feel t . It’s our life force . With it we are screwed . But also with an advancing pc we are fucked in the end . You will put it down if it rises You could stay low for some time . Or simply start adt again when it hits 2 ? It seems that all treatments are a gamble and a trade off for us . My trade is no t but I have no Psa or signs of pc . The realty that we all know is that pc cells can hide in the millions not seen on scans . Mine are hiding . I pray they never come back . Neither will m t . I Pray that you can stay on top of it .for many yrs .. Live well ! ✌️🍀

[fmenninger in reply to Hidden]

Grasshopper….The goal it capture, not kill!!

[fireandice123]

Amen! I hope the millions of the little bastards never rear up!

[Hidden in reply to fireandice123]

F em ! The enemy within . It’s us! Not friends of mankind! 😳😂👏👏👏

[LearnAll]

If you have your prostate undamaged...it can be assumed that up to 2.0 PSA might be coming from remaining normal prostate tissue. I just noticed that you had radiation therapy..in that case its not possible to know extent of damage to normal prostate tissue and only PSMA scan can tell the real story.

[Hidden]

Thank you , sensai! 🙏❤️

[Hidden]

How do you feel? Seems to be a very insignificant rise in PSA, ( at least by what I was told here about my own slow rise of .24 to .30 over about the same amount of time). I'd love to have some T....and maybe be able to trade in some fat for my old muscle. Good luck with the journey.

[RonnyBaby]

A 'vacation' is supposed to 'reveal' your actual status. U would HOPE for a rise in T and a PSA reading that 'stabilizes' at a low(er) level. You wouldn't know your 'PCa' status (cured, in remission, BCR, metastatic etc ..) unless you go through the process.

A PSMA scan won't show much until you surpass the 2.0 level, so you need to allow the PSA to climb to a level at or above that benchmark.

I've travelled that road - my PCa metastasized after a few years sitting at T3b (lymphatic spread and a bone met gets U to STG 4) with an anniversary date of nearly 6 years.

I had RT and ADT as primary treatment and got to undetectable as well (<0.02). I note your nadir never reached the lowest levels we are hoping to achieve (0.1 vs 0.01).

I'm not making ANY predictions, but your status is somewhat 'unresolved' so further time and testing should provide some answers.

MY case isn't typical - but the journey is far from over.

I'm undetectable (again for 6+ months) after a slow decent from a reading of 11+.

The latest scans (bone and CT) show a 'reversal' - meaning the previously visible 'hot spots' have shrunk or gone altogether. I was shocked to read the latest results that stated the following 'summary' - there is NO evidence of metastatic PCa ! I've been told by my medical team that I should be around for a LOT longer time - funny that I thought I was a dead man walking ?

I got there through a monotherapy and some supplements, but would not suggest that it works for everyone because all PCa cases are not the same. The message I'm trying to deliver is that you can't predict the path or end game with certainty and you shouldn't jump to conclusions or panic.

Continue to monitor you numbers and seek qualified professionals to assist and guide you.

Be the 'best' you that you can be - don't stop living and you could still be around for a long(er) time than you think.

Wishing you well on your journey ....

[DarkEnergy in reply to RonnyBaby]

"A 'vacation' is supposed to 'reveal' your actual status."

Exactly, this was our rationale for it, didn't think it was an ADT break to feel better. The PSMA PET/CT scan "revealed" Oligometastases status, therefore radiation treatment (RT), became a strategy.

My PSA held at <0.02 for almost a year with ADT+, then PSA got to 2.17 after 9 months (vacation) since last injection.

In a month from now, will check the PSA, will be interesting post RT, and unfortunately ADT+ continues.

[Hidden in reply to DarkEnergy]

Dear Friend..Who told you to vacation? Your idea? I’ve been adt 7 yrs , 6 yrs clear, yet my docs say no fuckin way. I feel like chucking the pills. I got no nuts so I’d need to inject to ever feel T again. That’s a risk some fellows here tell me I should pursue? But with no t I’m not the ol risk taker any more. At least I’m trying to give my newlywed wife a few more years of zero . 😳As we all know. APC has a mind of its own . Maybe just adt will put you back in to zero mode? I’m not the expert here. I feel the pain of anyone with a raising PSA issue . I’m counting on you to kick it in the teeth . Hang tuff brother! 🤙🏽

[CountryJoe]

How are feeling? Can you percieve a difference? I am considering a vacatión myself after 3 years of ADT and a PSA that has remained at.19 for a year.

[fireandice123 in reply to CountryJoe]

I feel good. My energy is coming back. Not back all the way but getting there. Hot flashes are gone. So are aches. I’m even getting decent erections.

I’m fighting to lose weight. I don’t have the excuse of low T now. I gained about 20 lbs during this round of ADT. On my first ADT round I gained 30 lbs and lost it relatively quickly. It’s not coming off as quickly this time. I’m down 6 lbs from my high but it’s a slog to keep losing weight. I’d really like to stay off ADT long enough to lose the extra weight.

[CountryJoe in reply to fireandice123]

That sounds very hopefull, Fireandice. Thanks for getting back to me. I am definitely a member of the "quality is more important than quantity" club.