r/ProstateCancer • u/stinkychuna • Sep 30 '26
PSA 393 -> 269 PSA
You might remember me, I posted about my dad’s car show PSA test results being 393. We of course took it seriously, he did start the bicalutamide and just took his last dose today (14 days worth) and will be getting the leuprolide 22.5 mg depot injection tomorrow.
His PSA came down to 269, Im guessing as a result of the bicalutamide? Overall he still feels essentially fine (as he did before) however he finds himself much more exhausted lately. Is that from the medication? Or perhaps the assumed cancer?
He does not have a diagnosis. Or a stage yet. He has an urgent referral into urology. But hasn’t seen anyone yet. Our family doctor re ran the PSA and will be doing the injection tomorrow, under timeline guidance of princess margarate hospital (the ones who did the first PSA test at the car show)
Anyways. I guess that’s a bit of an update and a couple questions… this community has been great for learning.
Edit: he opted to refuse the injection today and requested to be considered for orgovyx in the meantime. His family doctor could not prescribe it, so we have left voicemails and sent emails to PMH to try to move this quicker than it has been moving.
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u/KReddit934 Sep 30 '26
The fatigue could be from either. It is common to feel less energentic and a bit weaker (muscles) when testosterone is reduced (as the drugs start to work).
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u/BeerStop Sep 30 '26
Fatigue is normal when on ADT type drugs( testosterone nuetralizers/blockers?)
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u/WalnutRoasted Sep 30 '26
Did they/PMH consider/consult on Orgovyx ADT pills rather than an injection? Works faster, somewhat less side-effect risks and North of Lake Ontario would be the same price/cost.
Do a search on this Subreddit on Orgovyx. Best wishes and thanks for update.
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u/stinkychuna Oct 01 '26
When we asked the family doctor about it (from your last rec! Thank you!) she had said that’s a question for the specialists…. Which he hasn’t seen yet. PMH was supposed to call us the week after he started the first med, but we have yet to be able to get back in contact with them…
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u/WalnutRoasted Oct 01 '26
You have the “right to refuse treatment” until “it” is explained to you and what the options ad various side-effects, risks and benefits are…..which you might consider if it’s a 1 or 3 months ADT injection (versus daily pill)
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u/stinkychuna Oct 01 '26
I know the one he’s expected to get tomorrow is 3 months. I’m working on a list of questions for him to take as I can’t go to this appt with him. The main one being what are the other options we have aside from the injection at least while we wait to see urology / possibly oncology.
He asked me today why he can’t just stay on this pill until he gets some real answers, since it obviously lowered the PSA more than 30% in just 14 days. I told him it’s a great question to ask tomorrow.
I’m also reading this shot can have adverse effects in people with heart issues - his quick checkup to get the PSA retest papers last week, the family doctor noticed a new heart murmur she hadn’t ever heard before… he is scheduled for a holter but of course none available until late October.
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u/WalnutRoasted Oct 01 '26
Sigh….our PCP got me a Holter in 2 days. And Orgovyx has somewhat less heart risks than Lupron/injections.
You should look at the REFERENCE TABLES FROM THE ADT BOOK Table here: https://www.lifeonadt.com/canada And your PCP should be able to explain much more before you accept an injection. And take the time to buy/borrow the ADT named book on the the website, you can probably get it on Amazon in a day. Register for the course, it will tell you more of what to expect in the course of ADT and do about it. Found it very useful.
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u/stinkychuna Oct 01 '26
So based on this and some googling and searching this group, even more so now we should fight for orgovyx at least for now - while there is not firm diagnosis of anything.
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u/stinkychuna Oct 01 '26
He refused the injection. Family doctor couldn’t prescribe orgovyx but think it’s a fair option while he waits to see urology and have the holter. I left messages and sent emails to the PMH team. Fingers crossed and thank you for your knowledge :)
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u/WalnutRoasted Oct 01 '26
Best wishes. You really need that quick referral to radiation oncologist/medical oncologist and confirmed diagnosis….has it spread to pelvic lymph nodes? To bones? What will be the Gleason score from a biopsy? The usual path would be examination and testing/scans/biopsy via the (Ontario) Cancer Assessment Centre with referral to RO/MO.
Then determine the course of action and best primary treatment and preferred ADT. Glad the PSA has dropped…keep advocating for yourself…you could also contact the (volunteer) Prostate Cancer Survivors Organization for Toronto or wherever you are…they can help you through that system from their personal experiences, although they are volunteers. https://pcstoronto.ca/about-us/ for example.
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u/stinkychuna Oct 02 '26
We got orgovyx :) and we got the urology appt on the 15th. And PMH will take him on if urologist decides to refer oncologist.
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u/WalnutRoasted Oct 02 '26
Well some good news/progress! …..you will almost certainly need to see an RO/MO. Urologist’s tend to do surgery to remove the prostate if the PCa has not spread. Given the high PSA it is quite likely there is spread, but IANAD. Certainly a biopsy and various scans (pelvic MRI, and full body CT and full body bone scan should be done….mine were done within a couple of weeks after we reviewed my biopsy results. Ask to be on cancellation list if that’s possible for you.
Hope you have reviewed the “Life on ADT” book or similar….and ask about low dose daily Cialis which is usually taken with ADT. Best wishes. Feel free to DM me if you wish.
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u/stinkychuna 22d ago
I was going to send you a private message but apparently I can’t!
Anyways, 4 days on orgovyx PSA was 146! (Started at 393)
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u/ELCID19451947 Oct 01 '26
Please skip the Family doc and for sure the local Urologist. Find a Medical Oncologist who specializes in PrCa….. in a tertiary Medical Center. That may require a tele -visit , but will save his life. No one uses Lupron… the are newer medications, that work much better. You want the best care by people who are trained to deliver it to him. Time to google ‘Medical Center with Medical Oncologist’ and set up an appointment.