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?
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Radical prostatectomy in 2015 followed by ten yers of undetectable PSA (< 0.1).
In June of this year, my PSA rose to 0.11 (Quest), signaling a possible BCR.
Just yesterday (3 months since the rise) I had back-to-back blood draws at both Quest and Labcorp,. Quest came back at 0.11 again. Labcorp (an ultra-sensitive test) came back at 0.094. Quest was 17% higher than Labcorp but the big message was no upward change in 3 months.
PET PSMA, MRI and DRE all indicate a local recurrence though, but no evidence of mets. I will start EBRT in a week or two. Relieved to know that the cancer is not currently aggressive. Good chance of knocking out the small lesion in my anastomosis.
Not quite the results I'd hoped for when they popped yesterday — the radiologist examining the MRI said the area of my spine where I had a tumour in 2021 was "concerning" — but to balance that
1. That's where I had my emergency debulking surgery in 2021, and the spine is likely still rebuilding.
2. Exactly the same weak area showed up in my post-surgery and post-radiation MRIs in 2021 (which the radiologist strangely doesn't mention using for comparison).
3. There was no uptake in that spot for my bone scan in the spring, and the radiologist examining the CT thought it looked like bone remodelling, not cancer.
4. It's extremely unlikely cancer would recur in exactly the same spot on my spine, especially after it's been radiated with 20gy of SBRT.
5. There's no sign of issues anywhere else.
6. My PSA as of today remains undectectable (< 0.01) on the ultrasensitive test, and even rare neuroendocrine cancer generally expresses a *little* PSA (sometimes < 0.1, but I've never seen literature mentioning < 0.01).
7. My other labs are all good, and ALP — a strong indicator of bone distress — is actually declining. ✅
I was pretty upset yesterday when I first read the result, but after a bit of research — and excellent lab results today — I think the radiologist just missed comparing the MRIs from 4 years ago. I'll ask for a review when I meet the oncologist next Wednesday, before we do any more imaging.
And on a happier note, while its a couple of weeks early, this is my official 4-year bloodwork. I'm very happy that my PSA remains undectectable 4 years after I started treatment for de-novo stage 4 oligometastatic prostate cancer. I'd expected to be very sick (or no longer alive) by now, but surgery, radiation, ADT, and Apalutamide (Erleada) have worked a miracle.
If you ask me, this is FANTASTIC !!!! That spot is definitely a scar tissue - 100 % ! They just forgot to compare with previous scan. Especially since your PSA is 0.01 🙌 🥰 !!!
I am sure that your MO will confirm what you concluded yourself 🍀 but I completely understand "nagging small voice" buzzing in the background, it is the most annoying thing.
PC patients have to have those regular tests that are highly stress inducing - I told my husband today that he might live 30 more year with all of the treatments but that I will certainty go "bye-bye" due to mini heart attacks any time that there is some "test result" posted on his portal or while waiting for a result.
❝If you ask me, this is FANTASTIC !!!! That spot is definitely a scar tissue❞
Thanks! ❤️ That's what most of the radiologists have thought too (either that or bone remodelling) — I was on the operating table for over 10 hours for the emergency debulking surgery in 2021, and ended up with screws and cement fusing 5 vertebrae, then radiation a month later, so that section of my spine has taken a real beating.
Still, it's hard when I see even one radiologist saying "this spot near the cement is a bit concerning." I imagine it's like that for most of us living with cancer, either as patients or caregivers.
Hi North,
So happy for you to have had those positive PSA and other labs as well as the MRI (radiologist's neglect excepted). Perhaps your oncologist could have a flag put in your file for subsequent MRI readings to stipulate that a comparison be made to the previous MRIs and bone scans. No reason for them not to do so.
I am happy for you and, selfishly, for all of us who will continue to be blessed by your thoughts, perspectives and positive presence on MCC.
Bill
Thanks! I'm not out of the woods yet — I see the oncologist tomorrow afternoon — but I'm feeling reasonably confident (by all definitions of "reasonably"). If some catastrophic is happening, well (as with most forum members), it wouldn't be my first rodeo: I know that
a) preparing yourself for the possibility of bad news by worrying doesn't actually help if/when it happens (though it's only natural), and
b) if it does become active again, I've seen that I have access to the healthcare, support network, and personal resilience to cope.
Meanwhile, yesterday my hematologist "fired me" (actually mutual consent). After 4 years clear, and with me out of bed and walking again, it's unlikely my DVT from fall 2021 will recur. I'll stay on a minimal dose of blood thinner just to be safe, and my primary-care physician will take over monitoring.
I appreciate all the specialists who have supported me since 2021, but it's also reassuring every time my care team shrinks. If you have a big care team in Ontario (where hospitals don't get paid extra for seeing you), it's because you *need* a big care team.
Now, fingers crossed for this afternoon.
Sending vibes !!!! ✨🤗
@surftohealth88 It went as well as it could have. There's something going on there. Unlikely that it's cancer when my PSA is undectectable (< 0.01), but not impossible, so they'll follow up out of due diligence. To start, the oncologist is going to arrange a meeting of radiology and oncology together to do a restrospective review of my imaging over the past 4 years to see if they can resolve the conflicting assessments. After that, we may repeat imaging in 6 months to see if there's any change. A biopsy isn't practical with the cement and screws from the spinal fusion in 2021.
The good news is
1. Whatever it is — cancer or (more likely) bone remodelling — it's stuck between dead bone (from previous radiation) and cement (from spinal fusion), so it has absolutely nowhere to go.
2. While they'd planned to give me SBRT post-op in 2021 (and that's what later notes copied), it turns out I actually had a lower dose because it was so soon after my surgery, so I'm still eligible for SBRT at that spot the future if they decide it's concerning.
3. There's no other sign of possible cancer activity.
So I'm going to decide to go with glass half full. Nothing to worry about for now, and still no solid evidence of progression after four year, just a spot to watch.🥛