Dr. Patrick Walsh's Guide to Surviving Prostate Cancer

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