The new book is out and it’s better than ever, if I do say so myself! This is the Fifth edition of a book that, in various forms, has been a number one bestseller on Amazon since Dr. Patrick Walsh and I wrote the first one in 1993.
That first book was called The Prostate: A Guide for Men and the Women Who Love Them. Dr. Walsh came up with the title because in his vast experience, many men don’t want to think about their health at all, much less think about prostate cancer. In fact, it is often the women – wives, girlfriends, daughters, sisters, mothers, friends – who get them to go to the doctor. In my own case, which I’ve written about here and elsewhere, when my dad was diagnosed with prostate cancer, he never read his own daughter’s book! Instead, it was my mom who highlighted passages and read them aloud on the drive up to Baltimore to see Dr. Walsh from their home in South Carolina.
In that very first book, we covered all three things that can go wrong with the prostate: prostatitis, benign enlargement (BPH), and prostate cancer. We don’t do that anymore (although we do talk a bit about prostatitis, which is so often misdiagnosed and mistreated), because there’s so much new to say on prostate cancer alone.
Through my work with Dr. Walsh, the Brady Urological Institute at Johns Hopkins, and the Prostate Cancer Foundation, I have had a ringside seat at the forefront of prostate cancer research and treatment for three decades. I have interviewed and worked with some of the world’s best urologists, scientists, pathologists, radiation oncologists, medical oncologists, and epidemiologists in the field of prostate cancer. What a privilege! I was there, Gandalf, as Elrond says in The Fellowship of the Ring. I’ve seen where it was then, and I marvel at where it is now.
Back in the day, we didn’t know nearly as much about diagnosis. There was no routine screening for prostate cancer. The PSA test was brand new and doctors didn’t really know how to use it (some still don’t, unfortunately). There were no second-line blood tests like the 4k score or PHI test, which can help distinguish whether an elevated PSA score is most likely coming from cancer or BPH. We have so many good updates on diagnosis, in a chapter written with the help of Weill Cornell urologist Jim Hu, M.D. (Note: I use this information so often, in talking with men at various stages of diagnosis, that I have certain pages of this chapter earmarked and keep it on my desk, ready to go.)
Even if there had been regular screening back then, the treatments were not great. Radiation was not nearly as effective and caused many more side effects compared to today, and before Dr. Walsh transformed radical prostatectomy, surgery was brutal (more on that in a minute).
In the early 1990s, prostate MRI was not a thing. There was only one standard approach for prostate biopsy (through the rectum), and infection was a big problem. Hormonal therapy was not nearly as good then as it is now. A lot of men, including my grandfather, got estrogen at too-high doses that raised the risk of a fatal heart attack. There were no escalating hormonal therapies, no androgen receptor (AR)-blocking drugs. No enzalutamide, no abiraterone. No PARP inhibitors – and nobody had connected the dots between prostate cancer and inherited mutated genes such as BRCA 1 and BRCA 2.
Nobody thought much about PSMA (prostate-specific membrane antigen), and even if they did, there was no way to attach it to a radioactive tracer to light up tiny bits of cancer that had spread beyond the prostate, as we can do today with PSMA-PET. And there definitely wasn’t a way to link PSMA to cancer-killing radioactive molecules that could target and attack individual prostate cancer cells. There is now, and more of these radioligands are being developed.
There was no immunotherapy to speak of. Focal therapy (see below) was wishful thinking. We made no distinction in treatment between gay and straight men – not realizing that the treatment considerations are not the same for these men. We know this now, and devoted a whole chapter to these considerations.
Active surveillance as it is today – carefully monitoring slow-growing localized cancer, and then treating at the first sign of growth with surgery or radiation – did not exist; instead, it was “watchful waiting,” which was much less hopeful. It is so much better today, and we have a great chapter written with the help of Vanderbilt urologist Jeffrey Tosoian, M.D.
Before PSA screening became widespread in the 1990s, most cancer was diagnosed by rectal exam, when prostate cancer had grown large enough to be felt by a doctor’s gloved finger. Widespread use of the PSA test moved up diagnosis by five years, at least. But there was a learning curve. At first, doctors thought there was a magic PSA number: 4. If PSA was below 4, they thought, the man’s okay. But then we learned that men could have deadly prostate cancer with a very low PSA score. Scientists wrestled with PSA, trying to figure out how to make best use of it. I watched concepts like PSA velocity and PSA density come into play in real time. Northwestern urologist Hiten Patel, M.D., helped us write this chapter.
I have worked with the legendary urologic surgeon-scientist Patrick Walsh, M.D., since 1992. I started working with him 10 years after he performed the first purposeful nerve-sparing radical prostatectomy. The operation (the “Walsh procedure,” in fact) became the gold standard and changed the field of prostate cancer treatment forever. In 1982, only 7 percent of men with prostate cancer underwent surgery. That’s because the operation, as Walsh described it, used to be a bloodbath. Surgeons couldn’t see what they were doing. They operated in “a sea of blood,” he said, and men who underwent the old radical prostatectomy had to bank their own blood ahead of time, for the transfusion they would probably be needing. Every man who underwent the procedure wound up impotent and incontinent, and often, the operation didn’t even cure the cancer, because it had been diagnosed too late in that pre-PSA era.
The first thing Walsh did was figure out how to control the bleeding. Then he could see what he was doing – always useful in surgery! He developed techniques to preserve urinary continence. Then he had a patient who absolutely floored him: this man told Walsh that soon after prostatectomy, he had an erection! How could this be? And if this guy could have one, why didn’t all men after prostatectomy?
Nobody knew where the nerves that controlled erection lived. Surgeons assumed they were within the prostate. But Walsh, with Dutch urologist Pieter Donker, discovered the location of these microscopic nerves, which are in two neurovascular bundles that sit outside the prostate. (Side note: the official name is actually the “Neurovascular bundle of Walsh.”) Once Walsh found out where these extremely delicate bundles were, he figured out how to preserve them (as he inadvertently had in that one patient), and when it was safe to do so. Today the Walsh procedure is performed worldwide, usually done using a da Vinci robot (but also performed as open surgery in parts of the world where they don’t have a robot).
Edward (“Ted”) Schaeffer, M.D., Ph.D., trained by Walsh, is one of the world’s best urologic surgeons. He is Director of Urology at Northwestern University, a surgeon-scientist who, like Walsh, constantly works to improve his surgical procedure, to save lives from prostate cancer, and to improve quality of life after treatment. I am proud to tell you that he joined us for this edition as senior editor. He is terrific!
As a surgeon, Schaeffer has worked to improve the robotic nerve-sparing prostatectomy, and has developed a fascia-sparing technique that is producing exciting results in the early return of urinary continence. As the Chair of Urology, he has built a world-class prostate cancer program. He was the first in the world, in fact, to create a urology clinic specifically for gay and bisexual men. Our new chapter on special treatment considerations for these men was written with the help of Northwestern urologist Channa Amarasekera, M.D., who directs that clinic.
Also new in this edition is a chapter on focal therapy, and this is a big milestone for us. Why is this? Because prostate cancer is a multifocal disease. It tends to spring up in several places within the prostate at once, like seeds inside a strawberry. Thus, any treatment that aims at treating just a spot of cancer might miss another spot growing nearby. But we know a whole lot more about risk stratification – nuances based on a bunch of factors – and imaging is vastly better than it used to be. Focal therapy is not yet standard of care, but for highly selected patients, it can be a good option. We picked the brain of Northwestern urologic surgeon Ashley Ross, M.D., Ph.D., who is conducting trials of focal therapy in several forms, for this chapter.
There is so much in this new edition! New treatments for advanced cancer., written with the help of Johns Hopkins medical oncologist Michael Carducci, M.D. Going for a cure by treating oligometastasis with SBRT, which we wrote about with the help of University of Maryland radiation oncologist Phuoc Tran, M.D., Ph.D. The causes of prostate cancer, and things that lower your odds of dying of it, written with the help of Johns Hopkins epidemiologist Elizabeth Platz, Sc.D. The genes involved in prostate cancer. Interviews with Northwestern genetic counselor Brittany Szymaniak, Ph.D., and with Johns Hopkins molecular geneticist William Isaacs, Ph.D. Genetic tests, and who should get them.
What high-risk men (men with a family history, and men of African descent) need to know, and when to start screening. Hint: If you have a family history of cancer, including prostate cancer, you need to get a baseline PSA reading at age 40. It’s a simple blood test. Then, depending on your PSA, you may not need another one for a while. But I beg you, please get that baseline! Prostate biopsy: we discuss the two approaches (traditional transrectal and transperineal, which has basically zero risk of infection), and we have a great discussion with Johns Hopkins pathologist Jonathan Epstein on how to interpret your biopsy findings. Recovery of sexual function, with helpful advice from Northwestern urologist Nelson Bennett, M.D.
We also have a new chapter on survivorship: getting on with your life after a cancer diagnosis, written with the help of Mandi Buss, LCSW, of Northwestern. And we offer practical help for living with ADT and managing the side effects of medication.
Thirty years ago, when we wrote that first book, there was not much encouragement for men with advanced prostate cancer. That’s not true today; in fact, some of the most exciting advances in the field of prostate cancer are new treatments for advanced disease. There is more hope now than ever before.
In addition to the book, I have written about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” I firmly believe that 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.
©Janet Farrar Worthington