There’s a scene in the great movie, “Independence Day” (1996, never made a sequel) where Randy Quaid says, “I was saying that. Wasn’t I?” He’s been trying to inform people about aliens for 10 dang years.
I have won him over. I’ve been encouraging men to be health advocates, and women to advocate for the men in their lives, for over 30 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 stick to it; keep testing and watch the numbers.
See here for PSA details. this is from a series I wrote specifically for women, because in so many cases – including my own family – women are the ones who take their men to the doctor or take them to best doctor if they are not heard, who sit right there in the exam room and faithfully wait outside the treatment room and act as advocates for their husbands, fathers, brothers, boyfriends, even sons. In other cases, critical help comes from a friend, someone who has been or is in the same boat as you. Being an advocate for yourself or someone else it also means not ignoring red flags.
Recently, a man named Michael, who lives in Indiana, wrote to share his story with me. It’s a good story, and for the “win” column – but if he had listened to his first urologist, it might not have turned out so well.
In November 2024, blood work for Michael’s annual physical showed something alarming: a PSA 10.7. This was not his first elevated PSA. “By June 2021, my PSA had started to rise.” His family doctor referred him to a urologist. “He did tests and told me he thought everything was fine and that I only had to go back if the PSA went over 6.5 while I was in my 70s.”
RED FLAG.
For one thing, you can’t just look at the numbers. By themselves, PSA numbers are meaningless. For example, my father 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 approaching six years cancer free, thank God!).
“Over the next few years,” Michael continues, “the PSA went up but never above 6.” If your PSA changes 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 a fantastic line in the sand. Why 6? No reason.
Now, if Michael had benign prostatic hyperplasia (BPH), that could be a cause of the elevated PSA. I wish there was a way to block this. Oh wait! There is! There are “second-line” blood and urine tests that look for cancer biomarkers, in addition to various forms of PSA, including “free” and “bound” PSA (basically, the higher percentage of PSA that is freethe more likely you are free from cancerand to have BPH that raises your PSA).
When Michael’s PSA reached 10.7, he returned to the urologist. “He did tests and said everything was fine,” says Michael. “He ordered a urine test that looked at the genes in the urine and said it would take about four to five weeks for the results. In the meantime, I should relax as, he said, cancer usually makes the PSA rise gradually instead of like a hockey stick. Well, the scan didn’t take 5 weeks” to get results. Of course it didn’t happen. The results came back quickly and “said I had a 58 percent chance of prostate cancer.”
Michael’s wife, Linda, has been with him every step of the way on this journey, going with him to the next appointment. The urologist told Michael he needed a prostate MRI. Michael told him that he was claustrophobic and that he should “knock him out”. The urologist offered to prescribe Valium, but Michael knew that wouldn’t be enough. “He then said I needed a biopsy.”
Michael left the office with an appointment for an ultrasound-guided rectal biopsy – an approach that carries a risk of infection, compared to the transperineal approach, which reaches the prostate through the skin between the scrotum and rectum and has zero risk of infection. Transperineal biopsy also reaches areas of the prostate that cannot be reached through the rectum, which helped save my husband’s life.
I have my doubts about this urologist and I haven’t even been there. Michael and Linda were there, and they also had reservations. 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 anything, why the biopsy?’ But then came what should, in my opinion, be a deal breaker. “He told me that nobody dies of prostate cancer.” What;;
BIG RED FLAG.
Michael personally knew at least two men who had died from it. I know a lot more and I just checked the current numbers: an estimated 35,770 American men will die of prostate cancer in 2025.
The death toll is high. They were decreasing significantly until 2014. What happened there, you might be wondering? Oh, just a disastrous recommendation in 2012 by brain trust called the United States Public Service Task Force (USPSTF) against routine prostate cancer screening and resulted in many men being diagnosed with metastatic disease. In 2018, the USPSTF called this back garbage firebut the damage was done.
Michael talked to his priest who has stage 4 liver cancer. The priest said, “Get a second opinion.” Friends helped steer 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, Heavy gave him some good advice: “He said going through the colon wasn’t current best practice since you don’t have a sterile field.” Havey was polite, saying he’s sure the urologist was good, “but that sometimes technology gets ahead of people for a while. He said first I needed an MRI. When I explained my claustrophobia, he said, ‘No problem,’ they were sedating me. That was happening all the time.”
Michael’s biopsy was performed by none other than my co-author at book, Edward (Ted) Schaeffer, MD, Ph.D., one of the best urological surgeons in the world. He knew exactly where to put the biopsy needles, based on the MRI, and he 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’s been a journey, but it looks like we may have kicked that prostate cancer in the butt,” he says.
Throughout this journey, Michael had the support of his wife, children and granddaughter, and his church. It really had a village.
I’m excited for him, because he could be sitting still with the cancer growing inside him, without even knowing it. “I’m very concerned about 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 you did the biopsy, thank God it was Gleason 7 and that it’s gone now.”
The best way to look at prostate cancer is in the mirror as you move forward with the rest of your life.
In addition to book, I have written about this story and many more about prostate cancer on the Prostate Cancer Foundation website, pcf.org. As Patrick Walsh and I have been saying for years, Knowledge is power: Saving your life can start with going to the doctor and knowing the right questions to ask. I hope all men put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s and if you are of African descent or have a family history of cancer and/or prostate cancer, you should be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask. Note: I am an Amazon affiliate, so if you click the link and buy a book, I will theoretically make a small amount of money.
© Janet Farrar Worthington
