Share your test results (if you'd like)
I thought it might be helpful to have a thread dedicated to sharing routine test results, good or not-so-good. My intention is just to provide a place for sharing, support, and encouragement, not for debating tests and treatments
I'll start. I've been at stage 4b oligometastatic for over 2½ years, and last Friday I did my routine 12-week bloodwork. My PSA remains below 0.01 (undetectable), Orgovyx and Erleada are holding my testosterone at 0.2, and the other tests are in normal ranges, except for those related to iron, which are slightly low.
Overall, it was a banner day! 🎊 I always treat myself to a masala chai at the little Indian café across the street while I'm waiting for my results to pop.
Do you have any recent test results you'd like to share?
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
ADT REALLY SUCKS!!!!
Look into intermittent ADT instead of continuous. With any luck you will never have to go back on it. It takes time for the side effects to improve. Also, life expectancy is higher with intermittent ADT than continuous, but dying of cancer is more likely. ADT causes heart disease, diabetes, weight gain, and bone loss, not to mention ED, hot flashes, insomnia, emotional lability, depression and anxiety. 😥
Thanks! Yes, I've read that too, and I've also read that if you make it to 5 years with your cancer still castrate-sensitive, there's a high chance you're in long-term remission (since "cured" isn't a real thing in cancer, just a word to keep the patients happy). Keeping my fingers crossed, and hoping that more research comes out to make those more than just highly-educated guesses.
So far, the research doesn't show improved outcomes for intermittent ADT with advanced prostate cancer, the way it does with early-stage PCa: last I heard (a few months ago), overall survival actually declines (slightly) with "ADT holidays" for late-stage PCa in the studies they've done so far, but I'm hoping that will change as the research accumulates and they find the best way of doing it. Right now, I'm too nervous that if I stopped ADT, my castrate-sensitive PCa would return as castrate-resistant after a few months (or years), and I don't want to roll that die quite yet.
Your chances are much higher of getting castrate resistant PCa if you take it continuously. Let’s face it, we are all going to die of one thing or another. The most important thing is the quality of the time we have left.
"Your chances are much higher of getting castrate resistant PCa if you take it continuously."
I don't think the research has established that (yet), but it is a solid hypothesis. The thing is, there are basically three options:
1. if the cancer's not progressing, it's not progressing, regardless of what you're taking.
2. if it is progressing and you take ADT to shut down the castrate-sensitive cells, then the tiny minority of cells (if any) that are castrate-resistant may keep multiplying and eventually become dominant (though ARSIs like the -lutamides can postpone that, sometimes indefinitely)
3. if it is progressing and you *don't* take ADT, then the castrate-sensitive cells will remain dominant, but they'll still keep spreading because you're not doing anything to shut them down.
Neither option 2 nor 3 sounds great, but if option 2 gives you a lot more time before significant progression, that works for me.
Totally agree 👍🏻
Your caveat “if the cancer is progressing “ is very important. Going off ADT when the cancer is not stable would be dangerous.
Routine MRI tomorrow. My oncologist expects that it will just confirm what my PSA, other bloodwork, CT, and bone scans are all saying — that there's currently no evidence of active cancer in my body — but I feel nervous all the same. It was an MRI that first found the tumour on my spine back in 2021, which turned out to be metastasised prostate cancer (before that, I had no idea there was any issue with my prostate).
Send me good vibes, everyone.
p.s. Ontario regional cancer centres do have PSMA-PET, but they don't use it for routine monitoring; it wouldn't come into play for me unless there was some other indication of trouble, like rising PSA, other abnormal blood work (e.g. high ALP), bone pain, nausea, unexplained weight loss, etc. etc.
I'm sending Jeff vibes today so I will gladly add you too on my list 🥰👍✨✨✨
Best of luck NorthStar 🌟❄️🍀🍀🍀😊 !!! I am sure all will be clean as a whistle.
I had the scan. I'm low priority, since it's routine and they don't expect to find anything, so I might not get my results for a week. Honestly, that's fine.
In 2021, I was high priority, and had my results in a few hours (they woke me up in my hospital bed to tell me I had a tumour on my spine that was rapidly paralysing me).
Trust me, you never want to be in the high-priority queue for this stuff.