Question about PSAs

I was wondering if anyone has heard of this. My husband had bad back pain so went to the doctor for physical. Had blood work, normal prostate exam. Dr gave him some antiinflammatories. His PSA was normal, less than 1. After no better he went back. MRI of the spine showed extensive bone Mets in spine!! Referred to oncologist who ran another PSA. It was 650! Was it likely the first one was wrong or can it change that fast? (six weeks) Since the prostate cancer had already spread he had it way before he went to the doctor the first time.

[Darryl Partner]

Ask the lab to confirm you received correct psa reports , for both of those tests. Record all phone calls with lab and get their confirmation in writing. That said, unfortunately you both have to deal with what’s on your plate today. It feels bad when others make mistakes and you’re the one who suffers

[Caring7 in reply to Darryl]

Yes, write to the lab and request copies of all lab reports -- you should have these (and if they were two different labs, use the 2nd one in the future!) It's important to use the same lab for PSA as calibrations can be a bit different.

650 is a scary number but the number isn't everything. My husband's never went higher than the 50s but he was diagnosed with advanced spinal mets and a pretty hot tumor. His doctor noted a heterogeneous prostate, a high for his age but normal range PSA, and forgot to account for taking some hair loss drug that falsifies PSA results. If only he had said, "It's probably nothing but go see a urologist." Instead, he ignored all of it. No problems! It was so awful knowing this when Joe got diagnosed. He found out because he had a hairline hip fracture which led to MRI which led to the orthopedist telling him he had cancer.

Try not to waste too much time on the inadequacy of this medical situation -- but use it as a reminder that when something doesn't feel right for any reason, pursue it! We have followed that, and I think it's helped us stay focused and make sure he's getting the care he needs and deserves! One thing I learned really early in this process, you have to be your best advocate (or his best advocate). It's not that people are slacking - but they're busy and things fall through (temporarily). We switched oncologists after a couple of months because the guy's nursing staff was just not cutting it -- sending incomplete paperwork to insurance, not following through, not really knowing much, and the oncologist was not nearly aggressive for a 51-year old PCa patient.

It's a long road, and these first months are really rough (even without your crash landing!). Take it one day at a time. I always thought that saying was a bit trite but it's now a mantra -- although most often it's one month, sometimes even six months at a time! Good luck getting it all sorted out!

[Hidden in reply to Caring7]

Thank you so much for the wise advice. I now have a big folder that I keep all my husband's reports in. I do research, I ask questions and I go to every appointment with him. He isn't going to slip through the cracks on my watch again!!

[Caring7 in reply to Hidden]

Another good idea is to have a bound book (get a nice one that makes you a little happy maybe - nice picture on the front?) Write down notes for every appt. We write down questions before the visit, so we don't forget anything, rx refill requests (because pain killers are such a pain these days with hand-carry rx!!) and other stuff. At each appt, we note his vitals and PSA, and I usually take notes while he talks to the doctor, and I'll ask any questions at the end. We write down phone numbers and nurse/doc/social worker names, whatever. It has been invaluable, and sometimes we go back to trace things - oh, when did he get that, etc.

It will become your "new normal" -- it's not a great normal but it does normalize and that is a better thing. Hang tough.