Hi all, my dad was diagnosed 10/4/19. He had a PSA of 185, a pelvic fracture and ‘innumerable’ (I hate that word now 😔) mets throughout his pelvis, spine, ribs and shoulders. He had a biopsy of the tumor in his pelvic bone, PET scan, pelvis and spine MRIs, chest CT and xrays of all these areas including his femurs. He started on firmagon and xgeva right away. Then started Abiraterone (zytiga) on 11/1/19. PSA is currently 11 as of 12/24/19
My question is: when should his next scans be and WHAT should they be? (Bone scan? Another PET?)
Really appreciate any opinions. Thank you!
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j5000
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The next decision point is when to move on from Zytiga to another therapy (probably docetaxel or Xofigo and Provenge). That will occur when his PSA rises and there is evidence of progression on a scan. It's usually a bone scan, but he should have another scan of the same type he used at baseline (before Zytiga began).
There may be a synergistic effect of Celebrex and Xgeva - there is with Zometa, and they are similar in their effect. The Celebrex may help with pain too.
Thanks for the reply Tall_Allen. Thankfully my dad’s pain, at this time, is pretty much non-existent. I’ve read that scans should also happen even if the PSA is going down as PSA doesn’t always necessarily tell the whole story. Would you disagree?
Yes, I disagree in his case when you already know his cancer expresses PSA. The only reason to put him through another scan is if there is suspicion of treatment failure.
Thank you! He hates scans-as I’m sure you all do- so that is good to know.
I don't see the need for scans at this point and not until it's suspected that the current treatment is becoming ineffective.
Is his PSA still coming down or has it leveled off?
The lower the PSA goes, the less the chances of progression so as long as it keeps going lower, I would not be concerned about getting more imaging.
I would make one exception and that is if he devolops new pain symptoms somewhere. Then I think it would make sense to do imaging in that specific area and see what's going on.
Thank you Gregg57. Yes his PSA has gone downward (185 to 19 to 17 to 11). He take Tylenol occasionally for aches in his back which he says isn’t always in the same area and goes away when he walks and is up moving around. I get worried when he says this as it’s so hard to know what are pains from the cancer or pains from him just being 70 years old. Really appreciate your reply.
May I ask how often you get your PSA checked? Particularly in the beginning of your treatment? So far it’s been monthly for him which I would like to continue but not sure if that’s more often than needed.
I get my PSA checked every three months now although when I was first diagnosed and doing chemotherapy in addition to ADT, I checked it every three weeks. They had to do blood tests anyway for chemo so they checked PSA too. After my PSA stablized, I started checking every 3 months.
When I became castrate resistant my PSA started taking off so back to monthly until Zytiga started. Now it's stable again at .01 or less so every 3 months. So for me, it depends on what is going on and whether it's stable or changing fast.
A far as the pain goes, my pain is up and down and changes locations and intensity from one day to the next. I know how we are always wondering if it's the cancer, but it's often something else. I've had imaging done a couple times and both times they said it was arthritis.
I was dx in Nov 2018...with multi mets in spine, lymph nodes, femur. Did a PSMA/FDG scan to get a baseline....PSA was 162...Went on Zytiga, Lucrin, Zometa for a few months...And did another scan in April as well as monthly PSA test. PSA in Apr: 1.35 and scan showed improvement in some of the lesions. Then decided to do docetaxel treatment starting in Aug where PSA was down to 0.407. Just done with docetaxel ( 6 infusions) and did a similar scan in Dec. PSA : 0.149..and lesions continue to show very good improvement. The Dec scan will also be the new baseline. See the MO in late January. Hope this helps
I had a similar dx to your dad almost 6 years ago. My PSA has been undetectable for about over 5 years now. Early on I was getting bone scans every 6 months to gauge the effectiveness of treatment. As newer and better scans became available I was having those done. An Axumin scan was the last one I had. It is probably the most sensitive and accurate scan that Medicare or insurance covers. But keep in mind it is most accurate if your PSA is 2.0 or higher. Other scans like PSMA are newer and more sensitive but not FDA approved yet and not covered by insurance. The out of pocket cost is around $2500.
I still get monthly labs and pay particular attention to PSA and Alka phos levels. Which are indicators of active disease and bone mets. Unless my PSA increases I plan on holding off on any more scans.
I took an aggressive approach to treatment, you can click on my profile to see what I’ve done.
Didn’t say how old dad was, my doctor has me doing scans at the 6 month time frame to see if the cancers are getting bigger or not . Has me on Xgeva and eligard every 28 days since the chemo . My dad has stage 4 as well at 88 they had to take him off the zytiga and prednisone because of side effects. No scans scheduled since last one 20 months ago 😢😢. Hating this monster 🙏🙏🙏🙏
So many factors to determine a “norm” as everyone is different in terms of treatment, disease progression, disease scope, individual health, physician need to know, etc. . If in a trial, one can expect weekly and/or monthly blood draws.
I spent my first six months with weekly testing, then monthly for about two years, then six months of bi-monthly, and finally quarterly. I have been at this since 2004. Last year, we tried six month testing. I did not like, and went back to quarterly. I am very comfortable with quarterly. Others may be comfortable with six months or even annual........
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MRI found 2 cm lesion on pelvis, doctor said to ignore it.
looking for advice. 
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Is it reasonable to pursue ultrasensitive PSA test that is more precise than undetectable at <0.05?
