Biochemical recurrence, On / Off treatment with Orgovyx only
Hello good people!
Feel better already reading all the knowledge shared on this support group.
Can I get direction on if my choice is sound?
I have biochemical recurrence after prostate removed with robotic prostatectomy in 2019, gleason score was 4 + 5 = 9 after removal.
I have now a rising PSA of .99 from .45 which took 15 months to get there.
PSMA shows activity in the left prostate bed with no evidence of metastatic disease.
Besides needing to push myself away from the table more often, I feel I'am in decent shape for a 68 year old, still working as as an Assistant Engineer on a tugboat, to be retired at the 1st of the year.
Didn't see this coming until getting blood work results.
I don't like reading all the "medieval" options we have, so I plan getting another PSA before the 1st of the year to see where I'am at then doing the on / off with Orgovyx (which in reading isn't a walk in the park) but what I don't want to deal with is urinary / bowel issues for the rest of my life.
I know it's not a cure, but on the off time I'll have a better quality of life?
Thanks!
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Always tough decisions to make…
The technical definition of biochemical recurrence following prostatectomy is 0.20 ng/mL; but since you already know cancer is there with a 0.99, waiting for another PSA test doesn’t tell you anything you don’t already know. The PSMA PET scan told you what you needed to know.
> what was the SUVmax score of that “activity in the left prostate bed” from the PSMA PET scan?
I’m not sure what you mean by “…. doing the on / off with Orgovyx (which in reading isn't a walk in the park) but what I don't want to deal with is urinary / bowel issues for the rest of my life.”
> is the Orgovyx causing your urinary / bowel issues? (I know that Orgovyx has other common side-effects.)
If it were me, I’d first want to treat the recurrent disease with the appropriate treatment for the diagnosis and that maintained the quality of life that I expected to have.
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5 Reactions@biggalew I would insist on a top tier GU Medical Oncologist as opposed to a garden verity Medical Oncologist.
I have had no serious bowel changes after my radiation for my biochemical recurrence earlier this year. Oddly, I am just much more regular. You are outside of existing guidance with your treatment plan. You have a fast doubling time and an opportunity for treatment to cure. If I were in your position I would look for a facility that could start treatment in the next two weeks. That is just me. We all weigh risks differently. However, I would not be thinking of the few months ahead but the years ahead and try for a cure but your doubling time means act fast.
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1 ReactionSo, what do guidelines say...you can look them up.
Generally SRT by itself is out as a recommended treatment.
SRT in conjunction with systemic therapy is a treatment choice.
Were you to go that route you may want to discuss with your medical team, which as a minimum should include urologist, radiologist, oncologist:
Do we add the pelvic lymph nodes to the radiation treatment planned for the prostate bed? If so, why?
Do we add systemic therapy:
ADT
ADT + ARI
Which ADT
Which ARI
For how long?
De-intensification criteria
While Orgovyx is a treatment option, if you are thinking because the side effects are "less" than ok, go with that but at the end of the day, zero testosterone is exactly that, hit flashes, fatigue, muscle and joint stiffness, genitalia shrinkage and loss of libido are the common ones.
The severity of those on Orgovyx say vice Lupron, I've done both, same result.
So what are the advantages, well known, no flare, faster to castration, faster recovery ) for most, not all) after stopping, no trips to the doctor to get a shot, better CV side effect profile.
What are the disadvantages?
Depending on insurance, financial toxicity.
Requires you to take a pill daily, no ifs, ands or buts.
There are mitigating strategies you control, diet, exercise, managing stress.
You medical team can help with hot flashes if you ask.
How long would you be on systemic therapy, 6-36 months depending on your risk category. Intuitively, lower risk such as GS, GG, PSADT and PSAV, 6-18, intermediate like 18-24 and high risk 24-36.
De-intensification? In the EMBARK trial those whose PSA drops to "undetectable" in the first seven months cone off treatment and monitor.
I'm guessing your concerns are with the radiation. Yes, like anything medical, there are "risks."
Me, done 69 treatments, 155 Gya, SRT, WPLN and SBRT, side effects, nothing.
Today's radiation planning and delivery systems are pretty sophisticated and in the hands of a competent radiologist and their team should be low risk.
It may be your PCa has spread outside the prostate bed given the clinical data you describe.
Generally, if so, you switch from cure to "manage."
Terms like progression free survival become important as do side effects profiles, intermittent therapy, de-intensification...
Try not to take statistics from studies and apply them to you. They are population based and given the pace of change, may be "outdated."
I mean, everyday in life we take a risk, starting with getting up, then driving, flying.. those risks are minimal so we go about are lives, take mitigating actions...look left and right when the light turns green just in case some adopt ran the red light to save a few seconds....!
You can do Orgovyx but generally guidelines say you are likely to gain better control and PFS by doing something more intensive.
No T is exactly that...you are likely to recover T but no guarantees as to if, when and whether to your baseline.
Kevin
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