Your Own Best Advocate(s)

There is a scene in the great movie, “Independence Day” (1996; the sequel never happened) where Randy Quaid says, “I been sayin’ it.  Ain’t I been sayin’ it?”  He had been trying to make people aware of aliens for 10 dang years.

            I’ve got him beat; I have been encouraging men to be their own health advocates, and women to advocate for the men in their lives, for more than 30 dang years.

            For prostate cancer, being your own advocate starts with screening.  Ideally, with a baseline PSA test at age 40.  Maybe even younger if you have a family history of prostate cancer or cancer in general.  And then stay on it; keep getting tested and watch the numbers.

            See here for PSA specifics; this is from a series I wrote for women specifically, because in so many cases – my own family included – it is the women who get their men to the doctor, or get them to a better doctor if they aren’t being listened to, who sit right there in the exam room and faithfully wait outside the treatment room, and act as advocates for  their husbands, fathers, brothers, friends, and even sons.  In other cases, crucial help comes from a friend, someone who’s been, or is, in your same boat.  Being your own advocate, or someone else’s advocate also means not ignoring red flags.  

                 Recently, a man named Michael, who lives in Indiana, wrote to share his story with me.  It is a good story, and one for the “win” column – but if he had listened to his first urologist, it might not have turned out so well.

            In November 2024, bloodwork for Michael’s yearly physical showed something troubling:  a PSA of 10.7.  This wasn’t his first elevated PSA.  “In June of 2021, my PSA had started to climb.”  His family physician referred him to a urologist.  “He did an exam and told me that he thought everything was fine and that I only had to return if the PSA exceeded 6.5 while in my 70s.”

            RED FLAG.

            For one thing, you can’t just look at the numbers.  By themselves, PSA numbers are meaningless.  For instance, my dad had a PSA of 1.2 when he was diagnosed with Gleason 7 prostate cancer.  My husband’s PSA was 3 when he was diagnosed with Gleason 9 prostate cancer (caught early, treated and is coming up on six years cancer-free, thank God!).

            “In subsequent years,” Michael continues, “the PSA climbed but never above 6.”  If the PSA is changing more than 0.4 ng/ml in a single year, you need to know why.

            A PSA of 6 (or 4, or even 2 in a younger man) is an imaginary line in the sand.  Why 6?  No reason.

            Now, if Michael had benign enlargement of the prostate (BPH), that could be a cause of the elevated PSA.  If only there were a way to rule this out.  Oh, wait!  There is!  There are “second-line” blood and urine tests that look for biomarkers of cancer, in addition to various forms of PSA including “free” and “bound” PSA (basically, the higher percentage of PSA that is free, the more likely you are to be free from cancer, and to have BPH driving up your PSA).

            When Michael’s PSA hit 10.7, he went back to the urologist.  “He did an exam and said everything felt fine,” says Michael.  “He ordered a urine test that looked at genes in the urine and said that it would take about four to five weeks for the results.  In the meantime, I should relax since, according to him, cancer usually makes the PSA go up gradually instead of like a hockey stick.  Well, the scan did not take 5 weeks” to get results.  Of course it didn’t.  Results came back quickly and “stated that I had a 58 percent chance of prostate cancer.”

            Michael’s wife, Linda, with him every step of this journey, went with him to the follow-up appointment.  The urologist told Michael he needed a prostate MRI.  Michael told him he was claustrophobic and would need to be “knocked out.”  The urologist offered to prescribe Valium, but Michael knew that would not be enough.  “He then stated that I need a biopsy.”

            Michael left the office with an appointment for a transrectal ultrasound-guided biopsy – an approach that has a risk of infection, as compared to the transperineal approach, which reaches the prostate from the skin between the scrotum and rectum and has zero risk of infection.  The transperineal biopsy also reaches areas of the prostate that can’t be reached through the rectum, which helped save my husband’s life.

            I’m having doubts about this urologist, and I wasn’t even there.  Michael and Linda were there, and they had reservations, too.  Michael says:  “I asked him what his gut thought he would find in the biopsy, and he said, ‘nothing.’  If we were going to find nothing, why the biopsy?”  But then came what should be, in my opinion, a deal-breaker.  “He told me that no one dies of prostate cancer.”  What??

            BIG RED FLAG.

             Michael personally knew of at least two men who had died of it.  I know of many more, and I just checked the current numbers: an estimated 35,770 American men will die of prostate cancer in 2025.

            The number of deaths is up.  It was going down considerably until 2014.  What happened there, you may wonder?  Oh, just a disastrous recommendation in 2012 from the brain trust called the United States Public Service Task Force (USPSTF) against regular screening for prostate cancer, and resulted in many men being diagnosed with metastatic disease.  In 2018, the USPSTF dialed back this dumpster fire, but the damage was done.

            Michael talked with his priest, who has stage 4 liver cancer.  The priest said, “Get a second opinion.”  Friends helped direct Michael to Northwestern, and he soon had an appointment with Dr. Robert Havey, an internist.  When Michael told him about his urologist’s biopsy plan, Havey gave him good counsel:  “He said that going through the colon was not current best practice, as you don’t have a sterile field.”  Havey was polite, saying he’s sure the urologist was good, “but that sometimes the technology gets ahead of people for a while.  He said first I needed an MRI.  When I explained to him my claustrophobia, he told me, ‘Not a problem,’ they would sedate me.  That it was done all the time.”

            Michael’s biopsy was done by none other than my co-author on the book, Edward (Ted) Schaeffer, M.D., Ph.D., one of the best urologic surgeons in the world.  He knew exactly where to place the biopsy needles, based on the MRI, and found cancer: Gleason 7 (3+4), favorable intermediate cancer, curable cancer.  Schaeffer recommended surgery, and performed a robotic prostatectomy on Michael a few weeks later.

            Recently, Michael had his three-month post-op appointment.  His PSA was undetectable.  “It has been a journey, but looks like we may have kicked this prostate cancer in the butt,” he says.

            Throughout this journey, Michael had the support of his wife, his children and granddaughter, and his church.  He truly had a village.

            I am thrilled for him, because he could still be sitting around with cancer growing inside him, not even knowing about it.  “I am very troubled by the bad information you got from the first urologist,” I told Michael.  “Thank God your priest told you to do what I imagine you and Linda were already thinking – get a second opinion.  Thank God that you got the biopsy, thank God it was Gleason 7, and that now it is gone.”

            The best way to see prostate cancer is in the rearview mirror, as you move forward with the rest of your life.

In addition to the book, I have written about this story and much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org.   As Patrick Walsh and I have said for years, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.  Note: I am an Amazon affiliate, so if you do click the link and buy a book, I will theoretically make a small amount of money.  

© Janet Farrar Worthington