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PSA scores-WHERE IS THE ACCURACY? EXTREMELY CONFUSED

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Posted 10/7/2015 6:23 AM (GMT 0)
Hi everyone- I appreciate all your input about the other thread I posted about my husband's diagnosis. The question, the CONFUSION that I have about PSA numbers are...... if my husband was checked all these years and there was never a "red flag" in his numbers in the course of his checkups than I just keep wondering HOW CAN HE HAVE A MET to the iliac bone if six months earlier he had a PSA of 3.6 (he's 65 years of age) and than it went to 7.13 within six months and had gone out of the prostate already????? What I'm trying to understand is this...was it there growing even at a " normal" PSA level for some time even though DRE and PSA was within normal limits? Or did it really have the capability to "shoot outside" within such a short period of time? They say his gleason was 4+3 with 8 out of 12 positive cores. WHEN DID THIS HAPPEN?????
Posted 10/7/2015 10:22 AM (GMT 0)
Hi, I understand your confusion. Let me try to answer your questions....

PSA is not a cancer test, per se. It measures prostate activity and says "something is going on here that may or may not be cancer". Your husband's PSA is running in the average range for his age, so no alarms went off. The doubling in 6 months is what led to the biopsy and discovery.

Some versions of Prostate Cancer (there are at least 4) put out very little PSA, and your husbands appears to be one of those versions. Also, his diagnosis as Gleason 4+3 is not the best diagnosis to have.

I'm sure others will chime in with more insight and information. My suggestion is to get him to a top ten medical facility where there are experts in PC treatment, where there are excellent teams in surgery and radiation. He has every chance of a cure and will be around a long time to come.
Posted 10/7/2015 11:00 AM (GMT 0)
Sammyswife,

Have you talked with your doctor about performing biopsy of the bone where the hotspot is? If no cancer is found it may change your treatment options.
Posted 10/7/2015 2:53 PM (GMT 0)
Hi Sammyswife,
Bill also had very low numbers and imagery confirmed mets. In 2011' 12 years after his BRAC procedure, the numbers started creeping up
May 2011 0.89, June 2011, 1.65, Nov 2011 1.92. The URO didn't think it was a problem but Bill pushed and had a bone scan that confirmed 3 mets on his iliac. Because of the slow growth and his age (75 then 79 now) and family history, and after a second opinion from Dr. Carlucci at Johns Hopkins he opted for watchfully waiting. The numbers and imagery continued to creep along even with no treatment until this year when they popped (16.7 in Dec 14 and 22.17 in July 15.) and he started HT. For him, PSA velocity turned out to be the primary factor.
Bill's wife
Posted 10/7/2015 7:25 PM (GMT 0)
Halbert gave you good info. I totally understand your worries, but it's time to focus on treatment, rather than 'How Did This Happen?'

For some perspective, I will put on my science hat:
Prostate cancer is the result of a combination of several mutations and the reason that we see so many different kinds of prostate cancer is that these combinations are often different. As of today, not all of these have been identified, but one of the goals of ongoing cancer genome projects (like the TCGA) is to do just that. Hopefully, this will lead to better diagnosis and treatment, in the long run.

As Halbert already indicated, your husband's cancer appears to have an unusual combination of mutations that resulted in fast growth and metastasis.

For a review see
Matincorena and Campbell; Science 349,1483 (2015)

Post Edited (Sr Sailor) : 10/7/2015 1:31:12 PM (GMT-6)

Posted 10/7/2015 8:18 PM (GMT 0)
Hello Sammy's Wife,

Welcome to the forum. Sorry you find yourself here but glad you found us. Hope we can help.

As others have mentioned, some forms of prostate cancer don't produce much PSA and men with those forms can develop more advanced disease before their PSA reaches the level usually considered alarming. Or, to put it in terms of your question -- "How can this happen?" -- the answer is "Nobody knows. Sometimes it just does." It's not a particularly helpful answer. There aren't any helpful answers.

Fortunately, there are rather better answers to the question "What do we do now?" In another thread you mentioned that he was on Lupron and Casodex. That combination is the usual first treatment to manage the disease. It works well but it is only the first of many options with more becoming available all the time. If your husband wants to be aggressive he might talk to his oncologist about clinical trials for which he might qualify.
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