Dr. Patrick Walsh's Guide to Surviving Prostate Cancer

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By Patrick C. Walsh, MD, MD

By Janet Farrar Worthington

By Edward M Schaeffer, MD, PhD

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This revised guide covers every aspect of prostate cancer: everything from potential causes, diets, and diagnostic tests to curative treatment and innovative means of controlling advanced stages of cancer.

As of 2022, an estimated 268,490 American men will be diagnosed with prostate cancer. A high percentage of those will relapse. But the good news is that more men are being cured of this disease than ever before.

In a new and completely revised 5th edition, this lifesaving guide offers a message of hope to every man facing this illness, and the people who love them. Prostate cancer is a different disease in every man—which means that the right treatment varies for each person. Public awareness for this disease has transformed treatment and opened up new avenues of research; rapid advances in knowledge are being translated in new recommendations for management. In this book, Dr. Walsh et. al. will address such issues as:
  • The genes involved in prostate cancer, genetic tests, and who should get them. 
  • The powerful effect of lifestyle changes to reduce pro-inflammatory and pro-insulin resistance environments, such as alcohol intake, physical activity, and BMI. 
  • What high-risk men (particularly African American men) need to know, and when to start screening. 
  • Information and support for the LGBT community, transgender individuals, and people with prostates. 
  • New information on testing and imaging. 
  • Your post-treatment life; how to stay healthy after treatment and manage the side effects of medication, and also how to support caregivers. 
  • Advice and support for coping with your diagnosis and learning how to live life beyond prostate cancer

Excerpt

Acknowledgments

This book would not have been possible without the work and experience of many people, too many to name here. We tried, but the result looked like a telephone book—and had about as much personal meaning. So instead of listing all and inevitably missing one or two of the sources upon which we’ve drawn to produce this guide, we would simply like to thank those colleagues, patients, friends, and family members who have helped us the very most, including:

For this edition, we recruited Edward Schaeffer and Stacy Loeb, international experts in the diagnosis and management of prostate cancer, to take a leading role in formulating the revision. We were also fortunate to have the assistance of these Johns Hopkins experts: Elizabeth Platz in the epidemiology of prostate cancer; Jeffrey Tosoian on Active Surveillance; Phuoc Tran in radiation oncology; Trinity Bivalacqua in the management of erectile dysfunction; and Michael Carducci in medical oncology. In addition, we relied on the discoveries of other Hopkins experts in updating you on the latest in advances in the field: Jonathan Epstein, H. Ballentine Carter, Daniel Song, Theodore DeWeese, Mario Eisenberger, William Nelson, Martin Pomper, Charles Drake, Janet Walczak, Vicki Sinibaldi, Misop Han, Alan Partin, Ashley Ross, Christian Pavlovich, John Isaacs, William Isaacs, William Nelson, Angelo De Marzo, Tamara Lotan, Paula Hurley, Shawn Lupold, Bruce Trock, Jonathan Jarow, Dan Stoianovici, Daniel Chan, Lori Sokoll, Samuel Denmeade, Emmanuel Antonarakis, Jun Luo, Phillip Pierorazio, Edward Wright, and Kenneth Pienta; and on the work of Charles Drake, Robert Brannigan, and Suzanne Conzen.

We also acknowledge with deep gratitude the valuable contributions of these people: Peg Walsh; Alison Currie; Mark, Andy, and Josh Worthington; Blair and Ted Parrack; Bradley and Carole Farrar; Sally Worthington; and Ronald Farrar, at twenty years and counting after his successful radical prostatectomy.

We would like to thank the late Leon Schlossberg, for his original illustrations; David Rini, for his superb ability to tell a story with pictures; Channa Taub, our wonderful literary agent and friend; and Katherine Stopa, our excellent editor.

And as always, we would like to honor Tom Worthington, who died of prostate cancer when he was just beginning to live. Every man this book helps is a victory for you, Tom.




Introduction

This is our fourth edition of this book, and our sixth book about prostate disease. With every book Patrick Walsh and I have written since 1993, there has been exponentially more hope, and with this edition, there is so much more good news—especially for those who need it most: men with advanced prostate cancer.

We’re not out of the woods yet; men are still dying every day of this heartbreaking disease. In fact, this year, nearly 27,000 American men will die of prostate cancer. If you are an American man, your lifetime risk of getting prostate cancer is 1 in 8. But men who are diagnosed early have an excellent chance of being cured, with minimal side effects—particularly incontinence and erectile dysfunction (see chapter 11); in fact, many men with minimal, very slow-growing cancer can be carefully followed without needing treatment for years—or maybe ever. Moreover, men who have advanced prostate cancer are living much longer—some for decades—and a small but growing number of men who in previous years would have succumbed to widely metastatic cancer are not only alive but feeling great, because of unprecedented advances in hormonal therapy, chemotherapy, immunotherapy and radiopharmaceuticals (radionuclides), and new use of surgery and radiation as treatment for men with limited metastases.

From 1993 to 2014, because of early diagnosis—due to the introduction of PSA testing and a growing awareness that this isn’t just an “old man’s disease,” but one that can strike in mid-life, and that prostate cancer screening saves lives—and constantly improving treatment, we have seen a 51 percent decline in deaths from prostate cancer. Prostate cancer has dropped from the second to the third most common cause of cancer death, after lung and colorectal cancer, in American men.

Who’s at higher risk? We know a lot more about that, too. In startling research, scientists have discovered that your risk is not only higher if prostate cancer runs in your family; it’s higher if you have a family history of breast, ovarian, colon, pancreatic, and some other cancers. It turns out that mutations in the same genes that are involved in these cancers—genes like BRCA1 and BRCA2 and more than a dozen others—can cause prostate cancer, too. This means that the “men at higher risk” group—men who need to start screening for cancer in their forties—just got bigger. It also means that some of the newest gene-targeted drugs (discussed in chapter 13) that work particularly well against these particular mutations in breast and ovarian cancer work well in prostate cancer, too.

We know that men of African descent are not only more likely to get prostate cancer, but to have a more aggressive form of the disease. Also sobering: In these men, cancer tends to develop in the part of the prostate that is the most difficult to reach with a needle biopsy. Fortunately, magnetic resonance imaging (MRI) is better than ever, and able to reveal cancer that previously couldn’t be detected.

We know that obesity and smoking make it more likely for you to get prostate cancer, and that quitting smoking and losing weight can lower your odds of getting this disease—or, if you already have it, make it less likely that you will die of it (see chapter 3).

We also know, unfortunately, that the U.S. Preventive Services Task Force (USPSTF) did a terrible disservice to all men in 2012 when it recommended against routine screening for prostate cancer for men with no risk factors. One major problem with this decision—made without the advice of a single urologist—is that a lot of men don’t know they are at higher risk. They might have an African ancestor, or a family history of prostate or other cancer, and not know it—because they’ve lost touch with their family, or because many men still don’t talk about this disease. It is not uncommon for a grown man to find out that his father or grandfather had prostate cancer, got treated for it, and never told the family. What about men who smoke or are overweight, and don’t realize that their risk is higher?

Thousands of men who were told by their family doctors that they did not need prostate cancer screening have been diagnosed with the disease when it is more advanced and difficult to kill. This did not need to happen, and we rejoice that in 2017, in response to a huge outcry from urologists, radiation oncologists, medical oncologists, and from patients themselves, the USPSTF has backed off this bad advice.

Maybe you’re reading this book because, along with more than 160,000 American men this year, you’ve been diagnosed with prostate cancer—and have become a member of what many call the reluctant brotherhood, a club nobody wants to join. Or maybe you’re in the reluctant sisterhood, and you’re reading this so you can help your husband, father, brother, son, or friend. Or maybe you’re not yet an official member of the club, but you’ve received an unwelcome invitation—a change in your PSA, maybe, or a prostate biopsy that turned out to be negative. Maybe prostate cancer runs in your family, and you’re interested in learning what you can do now to prevent or delay this disease.

In any case, we’re glad you’ve found your way here.

I wouldn’t wish the way I came to this disease on anyone, and I truly hope that you are coming to this book from an entirely different place. Until 1991, it’s safe to say that I never thought about the phrase prostate cancer, and in fact, I didn’t really know much about the prostate at all, except that men had one and women didn’t.

That changed dramatically when I watched my fifty-three-year-old father-in-law, Tom Worthington, die of prostate cancer within a year of his initial diagnosis. It’s hard to believe now, but in those days, nobody knew about PSA (prostate-specific antigen), nobody got screened, and men who got prostate cancer really didn’t talk about it. There were few support groups for men with prostate cancer, or for their families. Tom was diagnosed because he went to see the doctor about persistent back pain. That was the cancer, already in his bones. His tumor spread like wildfire. He died in a nursing home, castrated, hooked up to a catheter, in agonizing pain, pitifully thin, his bones so riddled with cancer that his arm shattered when a nurse tried to move him. I thought of him a lot as we wrote chapter 13 of this book. Now, thank goodness, among the many new drugs we discuss are some that target prostate cancer before it has a chance to reach the bones.

Back then, most men who found out they had prostate cancer died of it, and the side effects of treatment were often as frightening as the disease itself. If cancer had spread outside the prostate or had returned after treatment, the philosophy seemed to be to wait until everything else failed before even attempting chemotherapy. That fatalistic worldview has changed. Thanks to research done at Johns Hopkins Hospital and at other great centers, doctors now have means (see the tables in chapter 5) of predicting who’s at risk of a cancer recurrence—and instead of waiting for cancer to show up, they go after it much earlier, when it is most susceptible.

One thing you’ll learn from this book is that every single case of prostate cancer is different—as individual as a fingerprint. The seriousness of a man’s cancer depends on so many things. Some of it’s the genetic deck of cards he was dealt. Some of it has to do with what a man eats, how big his waistline is, and whether he smokes. We are still learning how all the seemingly insignificant choices a man makes every day can affect his susceptibility to prostate cancer, and conversely, his ability to fight it off.

It makes sense, then, that the treatment for every man is different, too. Patrick Walsh is a legendary surgeon and one of the most respected prostate disease specialists in the world. In fact, he developed the operation called the anatomic radical retropubic prostatectomy, in which the prostate is removed, but potency and continence are preserved. (This operation is also known as the Walsh nerve-sparing procedure.) He will be the first to tell you that surgery is not ideal for every man. To give you the best possible help, we have asked top pathologists, radiation oncologists, and medical oncologists for their advice and perspective.

When my father-in-law died, I was working at Johns Hopkins as the editor of the medical alumni magazine. I decided to do a story on prostate cancer—mainly with the hope of finding out how this “old man’s disease,” which men were supposed to die with, not of, could kill a man in the prime of life.

I made an appointment to see Pat Walsh. So unattuned was I to the world of prostate cancer that I didn’t even know who he was, other than that he was the head of urology at Johns Hopkins and his office was right across the street from mine. I had no idea there was a cure for prostate cancer and that Walsh had invented it. I didn’t know he had developed the operation after years of intense, meticulous study of the anatomy of the prostate and male urinary and reproductive systems—a bedrock knowledge of the fundamentals, as athletes say. I quickly learned that curing prostate cancer isn’t just a job for him, the basis of a successful career that has won him every possible honor and award in the field. It’s his life’s mission. At Johns Hopkins, Pat Walsh put together a world-class team of oncologists, radiation oncologists, molecular biologists, pathologists, urologists, and geneticists who have been tackling this disease from every angle for the last two decades. The fruits of their labor appear throughout this book. Walsh, along with his longtime research director, a brilliant man named Don Coffey, is the driving force that made much of it happen.

And finally, I had no idea that he would, within a few years, be the reason that prostate cancer was diagnosed early in my own father. What are the odds that this gifted surgeon with whom I would start to write books would one day take out my dad’s prostate and cure his cancer? That was twenty years ago; Dad’s PSA remains undetectable. I rejoice that for my father, prostate cancer was truly just a blip on the radar screen of his life, and that he is around for me and my brother and his six grandchildren. Dad’s was the best example I know of an ideal scenario: prostate cancer detected early, because my mom and I made him get his PSA tested, which he grumbled about but did anyway; treated; and cured. I am so happy for the many men I’ve met and kept up with over the years who have been treated for prostate cancer and who are doing fine now.

Pat Walsh once told me something that one of his toughest professors in medical school used to tell all his students: “You are not here to make friends. You are here to find the truth.” And that’s who he is. He doesn’t mince words, doesn’t gloss over anything, and doesn’t pretend all treatments are equal. But if he tells you something, you can trust him.

Today, my husband, Mark, whose family history (on both sides) of prostate cancer first catapulted me into this reluctant sisterhood, continues to have a very low PSA, and we’re watching it like a hawk. He had a genetic test (like the one mentioned in chapter 10) to check for the faulty genes we discussed above, and thankfully, it was negative. Are we home free? My husband and I each have a younger brother. What about them? We have two sons. What about them? There is no way we will ever be complacent about prostate cancer.

I’m telling you all this to show that when I welcome you into this reluctant brotherhood and sisterhood, I mean it. I’m in it, too—which means we’re in it together. Nobody wants to be in this situation, but believe me: it’s infinitely better than it has ever been.

—Janet Farrar Worthington




1

WHAT THE PROSTATE DOES: A CRASH COURSE IN MALE ANATOMY

Prostate cancer is the last thing most men would ever choose to think about. It’s not just a scary subject; it’s tough to understand. The disease itself is complicated, and the decisions about what to do next are not always clear-cut. There’s a lot to sort through and attempt to make sense of; that’s why we have a “Short Story” in every chapter.

If this were a potboiler novel, a real page-turner, you wouldn’t need any guidance on how to read it; you’d just get going. If, on the other hand, this were an academic textbook, you might approach it with a highlighter in hand, emphasizing key points and take-home messages in bright yellow marker. This book falls somewhere in between, and people read it in different ways. They kick the tires, in effect—flip through the pages; maybe they head directly to a specific section, such as impotence or biopsy, then backtrack and read about how prostate cancer gets started or jump ahead to chapters on treatment.

With this in mind, in every chapter we’ve done our best to tell you what you really need to know up front, in a highly abridged form. Consider the Short Story your briefing, or your “headline news.”

That said, here’s what you need to know about the anatomy of the prostate.

WHAT IS THE PROSTATE?

Like the appendix, the prostate is expendable. Men can live quite comfortably without it. The prostate’s biggest job, as far as we know, is to provide part of the fluid that makes up semen. But even this contribution does not appear to be crucial for reproduction—which is why some scientists think the prostate’s main role may be to safeguard the reproductive tract from infection in the urinary tract. (In fact, its name in Greek means “protector.”) It is not a vital organ. Thus, the major importance of the prostate is not what it does but what goes wrong with it: For nearly all men who live long enough, it causes problems. These are:

• Prostate cancer, the most common cancer in men;

• BPH (benign prostatic hyperplasia, also called enlargement of the prostate), one of the most common benign tumors in men and a major source of misery as men get older; and

• Prostatitis, the most common cause of pelvic pain in men.

IF IT’S NOT A VITAL ORGAN, WHY IS IT IMPORTANT?

Although it’s only as big as a walnut, the prostate is a miniature Grand Central Station, a busy hub at the crossroads of a man’s urinary and reproductive tracts. It has a highly strategic location, right at the outlet to the bladder. Urine and semen cannot leave the body without passing through the prostate. It’s also tucked away deep within the pelvis, surrounded by vulnerable structures—the bladder, the rectum, the sphincters responsible for urinary control, major arteries and veins, and a host of delicate nerves, some of them so tiny that we’ve only recently discovered them. This is why any form of treatment for prostate cancer can produce side effects including incontinence, impotence, and rectal bleeding.

WHAT ELSE ABOUT PROSTATE ANATOMY DO I NEED TO KNOW?

The prostate is like a complicated sponge, with five distinct parts called zones (see Fig. 1.3). The two most important for our discussion are the peripheral and transition zones. Located next to the rectum, the peripheral zone is the main site where cancer develops; the transition zone surrounds the urethra and is the principal site where BPH begins. The prostate’s growth and function are stimulated by hormones: testosterone is produced in the testicles and converted to another hormone called dihydrotestosterone (DHT, the most active male hormone) in the prostate.

The bottom line: The prostate is a gland that does much more harm than good and is located in a terrible area that complicates any attempt to treat it. Despite this, there has never been more hope in the treatment of all prostate disorders—especially cancer.

The Prostate’s Strategic Location

Welcome to the prostate—the bustling, walnut-sized hub at the crossroads of a man’s urinary and reproductive tracts.

What makes such a small, relatively obscure gland so important to men? The answer is not immediately obvious: the prostate is not, for example, a vital organ like the heart. Its biggest job, as far as we know, is to provide about one-third of the fluid that makes up semen. But even this contribution does not appear to be crucial for reproduction, leading some scientists to suspect that the prostate’s main purpose actually may be to safeguard the reproductive tract from infection in the urinary tract. (In fact, its name in Greek means “stands before” or “protector.”) The prostate has few other redeeming features, isn’t necessary for life or even for sexual function, and is known primarily for the clinical problems it causes to nearly all men who live long enough.

What the prostate does have, however, is a highly strategic location right at the outlet to the bladder. Urine cannot leave the body without passing through the prostate via a tube called the urethra. (Think of the urethra as an expressway and the prostate as the Lincoln Tunnel.)

Nothing About the Prostate Is Easy

From a urologist’s standpoint, even a routine checkup—to feel for lumps or hardness with a rectal examination—is more complicated and takes more skill than many of our patients realize. (For a detailed discussion of diagnosing prostate problems, see chapter 6.)

The prostate is as tucked away—and as surrounded by booby traps—as any of the prizes sought by Indiana Jones in Raiders of the Lost Ark (see fig. 1.1). It lies in the midst of vulnerable structures—the bladder, the rectum, the sphincters responsible for urinary control, major arteries and veins, and a host of delicate nerves, some of them so tiny that nobody knew about them for centuries—that can foil any physician who ventures into the area without exquisitely precise knowledge of the terrain. This is why any procedure to treat prostate cancer can produce side effects including incontinence, impotence, and rectal bleeding.

The prostate fits snugly within the pelvis; there isn’t much breathing room there. Unfortunately, not only is the prostate packed tightly amid other structures, like pieces of a jigsaw puzzle, it is poorly insulated. The flimsy wall separating the prostate and the seminal vesicles is thinner than a piece of tissue paper—not much of a buffer for cancer. Consequently, once cancer reaches a critical size, it can easily penetrate the wall of the prostate and escape into this overcrowded region of the body, spreading to the nearby seminal vesicles or lymph nodes or even farther, into the bloodstream.

This is why, even though treatment for prostate cancer is improving dramatically, a man’s best protection against this disease is to have it detected as soon as possible.

Ideally, for an American man at average risk of prostate cancer, screening should start at age forty with a physical examination and a blood test for prostate-specific antigen (PSA) (see chapter 5). This first prostate checkup should establish a baseline, an essential comparison point for your doctor to refer to in future visits.

What happens next depends on that first PSA level, but your doctor will probably want you to come back for another exam and PSA test every two to five years. Like a suspicious character—but one on whom the police can pin no actual crime—the prostate is best put under observation at age forty and beyond. This is especially important if you are at higher risk—that is, if you are of African descent or have a family history of prostate cancer (see chapter 3).

To Sum Up the Prostate

It’s a gland that does much more harm than good and is located in a terrible area that complicates any attempt to treat it.

Despite this, there has never been more hope in our field. At last, we are finding answers to the toughest questions of prostate cancer: Where exactly does it begin, and why? How does it spread? If we can’t cure it, can we contain it—can we make advanced prostate cancer a chronic illness, like diabetes, instead of a fatal one? Can we change our thinking and try drugs that were once considered last-ditch measures sooner? Can we unleash the immune system so it can turn its full force against prostate cancer? Can we try adjuvant therapy, which has proven successful in breast cancer? Can we actually prevent cancer or somehow slow its progress with diet? If PSA comes back after surgery or radiation, what does it mean—and how much time do we have to find a more effective treatment? As for radical prostatectomy and radiation therapy, can we make these treatments even better, with fewer side effects and quicker recovery of potency and continence? How can we help men and their families get their lives back? How can we improve quality of life? Keep reading.

FIGURE 1.1 Crowded Territory

There’s the prostate, nestled deep within the male pelvis—at a highly strategic location, right at the outlet to the bladder. The prostate is surrounded by vulnerable structures—the bladder, the rectum, the sphincters responsible for urinary control, major arteries and veins, and a host of delicate nerves.

A Brief Anatomy Lesson

This crash course in anatomy, though brief, still may be more than you ever wanted to know about the prostate and anything even remotely linked to it. But we believe it’s essential that you understand where the prostate is and what it does, the two main systems it influences—the reproductive and urinary tracts—and how they can be affected when something goes wrong.

FIGURE 1.2 The Bladder, Prostate, and Urethra

Urine flows from the bladder via a tube called the urethra, but it can’t leave the body without passing through the prostate. Think of the urethra as an expressway and the prostate as the Lincoln Tunnel. Inset: Like a sponge, the prostate is made up of tiny glands. These drain into ducts that, in turn, transport secretions to the urethra.

Reproductive Tract

For the reproductive organs, the basic act of sexual intercourse is as highly choreographed and synchronized as a NASA shuttle launch. First, the climate must be just right—in this case, the weather is a chain of coded chemical messages and hormonal signals. The equipment must be working properly, too. The main vessel, of course, is the penis, a remarkable construction that relies on hydraulic principles for erection, requires a delicate balance between arteries and veins, and is orchestrated by many intricate nerves. Orgasm, the climax of sexual intercourse, involves instantaneous, nearly simultaneous firings of fluid from the prostate, seminal vesicles, and testes (which make sperm). Because the prostate is the focus of this book, we’ll begin there, although as we’ll discuss, sexual potency and intercourse really begin in the brain.

Prostate

Genre:

  • "The ultimate book on the No. 1 men's disease in the world...should be in every man's home." --USA Today
  • "Dr. Walsh is widely regarded as the nation's finest prostate surgeon...Very current...thoroughgoing primer on the disease, full of accessible but detailed explanations." --Washington Post
  • "Comforting, encouraging...a must-read for women, men, and families...tells you everything you need to know." --Elizabeth Dole

On Sale
Oct 3, 2023
Page Count
480 pages
Publisher
Balance
ISBN-13
9781538726860

Patrick C. Walsh, MD, MD

About the Author

Patrick C. Walsh, MD, the world's foremost authority on prostate cancer, is the Distinguished Service Professor of Urology at the Brady Urological Institute of the The Johns Hopkins Medical Institutions in Baltimore, Maryland. Dr. Walsh was honored as the 2007 National Physician of the Year for Clinical Excellence by America's Top Doctors.

Edward M. Schaeffer, MD, is Chair of the Department of Urology at Feinberg School of Medicine and Program Director of the Genitourinary Oncology Program at the Robert H. Lurie Comprehensive Cancer Center of Northwestern University. He is a clinically active urologist with a specialized practice in prostate cancer. His globally recognized prostate cancer research focuses on at-risk populations, diagnosis, treatment outcomes, and the molecular biology of lethal prostate cancer.

Janet Farrar Worthington has written and edited numerous health publications and books. She is the editor of Discovery, a research magazine for the Brady Urological Institute at Johns Hopkins, and also the writer/editor of LEAP, a magazine for Johns Hopkins Rheumatology. The former editor of Hopkins Medical News, the alumni magazine for the Johns Hopkins School of Medicine, she is the senior writer for the Prostate Cancer Foundation. She often writes about prostate cancer for her men's health blog, vitaljake.com.  She has written three non-medical books, Bumble Creek Farm, Where's the Wine?, and Nelson Llama (with Laura Hatcher), a children's book.  She also has a nonmedical blog, janetfarrarworthington.com.  For six years, she was a national commentator for Marketplace, on public radio.  She lives in Prescott, Arizona.

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