"Vital new information for men diagnosed with prostate cancer!"
—George Johnson, Director of the Informed Prostate Cancer Support Group in San Diego, the largest independent group in California
If you or someone you know is one of the thousands of men diagnosed with prostate cancer each year, this book is must reading. In Prostate Cancer Breakthroughs, best-selling author Dr. Jay Cohen provides new information on PSA testing, targeted biopsy, and groundbreaking prostate cancer treatments.
Concise and easy to understand, Prostate Cancer Breakthroughs focuses on the information that all patients need to know. It first offers a step-by-step look at the entire diagnostic process, up to and including the diagnosis, and suggests how you should go about getting a second and even a third opinion. It then describes twelve different treatment choices that may be considered. Other important topics include genetic testing, Carbon-11 Acetate PET/CT scans for earlier identification of metastases, medication therapy, and more. Studies have proven that most men diagnosed with prostate cancer do not need surgery or radiation treatment. Prostate Cancer Breakthroughs tells you how to determine what your options are. In the words of one reviewer, "This book answers all of your questions and others you didn't know to ask."
In this book, you will discover:
* Why 85% of men who get surgery or radiation for prostate cancer do not need it.
* Why a high PSA test does not necessarily mean cancer.
* How to tell if you really need a biopsy (many men don't).
* Why a targeted biopsy is superior to a standard biopsy, and where to get one.
* Why dynamic contrast-enhanced imaging (DCE-MRI) is key to deciding on treatment.
* Which genetic tests are available for accurate diagnosis and more effective therapy.
* If medication, rather than surgery/radiation, is a valid choice for you.
Today, many doctors and patients are still not aware of the breakthrough methods of diagnosis and treatment that are being used at top United States cancer centers. Prostate Cancer Breakthroughs provides the up-to-date information you need to make the choices that are right for you.
Jay S. Cohen, MD, is an Associate Professor (Voluntary) of Family and Preventive Medicine at the University of California, San Diego. Dr. Cohen is a widely recognized expert on prescription drugs and their natural alternatives. He has published scientific papers in leading medical journals and has written articles for Newsweek, Bottom Line Health, and Life Extension Magazine. A highly sought-after speaker, Dr. Cohen is also the founder of the Center for the Prevention of Medication Side Effects, which offers commentary on current issues in medical care.
A Better Diagnostic Approach
1. An Annual PSA Test
2. Blind Biopsy, Targeted Biopsy, or No Biopsy?
3. Assessing Your Findings
4. The Support Group
5. The Dynamic, Contrast-Enhanced MRI
6. The Color Doppler Ultrasound
7. Genetic Diagnostic Tests
8. The Carbon-11 PET/CT Scan
When the Diagnosis Is Prostate Cancer, What’s Next?
9. Aggressive Therapies
10. Non-Invasive Therapies
11. Focal Therapies
Weighing the Evidence and Making a Decision
12. What Does Your Data Say?
13. Thirty Questions to Ask Your Doctor
About the Author
I want to express my deep appreciation to the Informed Prostate Cancer Support Group. The willingness of its members to reach out and educate men like me who are newly diagnosed with prostate cancer is both generous and invaluable. Their new efforts changed the course of my medical care for the better. Groups like IPCSG are helpful not only for supporting men with this terrible and sometimes deadly cancer, but also in spreading the word about vital new tests and treatments, ideas that men with prostate cancer can take to their doctors, thereby facilitating much needed change in the medical approach to prostate cancer care today. For readers of this book, the IPCSG website (ipcsg.org) is an excellent source of information, particularly the monthly lectures and discussions, available on DVD, with top experts in all of the fields of medicine that are involved in the treatment of prostate cancer.
My sincere thanks also to the small group of fellows who met every week over Chinese food to discuss our individual challenges as well as new ideas and reports about prostate cancer.
I also want to thank my publication team of Beth and Ezra Barany of Barany Consulting, and my reliable proofreaders, Karen Lockwood and Barbara Isrow-Cohen. Thank you for your guidance, support, and encouragement in my new adventure as both writer and publisher. It has been an ongoing learning experience and a thrill.
I learned I had prostate cancer six years ago. Dr. Summers, my highly experienced and knowledgeable urologist, recommended surgery or radiation therapy for my disease. As a writer, I am always open to new ideas for a book, but I decided against writing about my prostate cancer. I didn’t want to think about it any more than necessary. I wanted to get treated and move on with my life.
And so, two weeks later I met with Dr. Frederick, the prostate surgeon. As he described the details of prostate removal surgery, or prostatectomy, in which he would remove the entire prostate gland, he asked me: “Do you want me to take out one or both neurovascular bundles?”
The neurovascular bundles contain the nerve and artery trunks to the prostate gland. Cutting them could render me impotent or incontinent, possibly both, perhaps for the rest of my life. I was too dumbfounded to answer.
The doctor continued, “Your cancer is on the left side, so we should definitely take that bundle out. If we don’t, there’s a 30 percent greater chance of your cancer returning. Still, to give you the best chance of getting all of it, we should take the right bundle, too.” He paused for a second, then asked, “What do you want to do?”
Dr. Frederick was intelligent, experienced, calm, and personable. He had performed more than five hundred robotic prostatectomies, the treatment most often recommended for prostate cancer. Based on his demeanor and attention to detail, I figured he was a good surgeon.
What did I want to do? My left brain struggled to find an answer, while my right brain recoiled and cringed. I had been diagnosed with prostate cancer two weeks earlier, and everything I’d heard since then sounded worse and worse.
Dr. Frederick assured me that over time, most men get some return of normal sexual and urinary functioning, but what did “over time” and “some return” mean? Although I was a doctor, I wasn’t a urologist or an oncologist, and I was as overwhelmed as any of the other 240,000 American men who face this situation each year.
Listening to the doctor speak so calmly about mutilating my body seemed unreal. This was serious, permanent, no turning back stuff. I imagined being single at sixty-six, impotent and incontinent. I couldn’t fathom it. On the other hand, I imagined dying slowly, agonizingly, of prostate cancer. Tough choices.
I weighed the odds Dr. Frederick had given me. Part of me wanted to halt the debate in my head and simply say, “Okay, let’s get it over with!” I figured I probably wouldn’t become both impotent and incontinent. I’ll be okay, I told myself. Empty words. I was in deep denial. I could not perceive myself as anything other than what I had always been. I’d had surgeries before and came out fine.
Suddenly I heard myself saying, “Let’s do it.”
Surely I had PTSD, post-traumatic stress disorder. It doesn’t take a war to cause PTSD. Mine began with the C-word—cancer—and now with Dr. Frederick’s graphic descriptions of severing nerves and removing prostates, my PTSD was peaking. I am not the only one to react this way. Heart attacks and suicide rates double after men receive a diagnosis of prostate cancer. You can see why.Fate rescued me from my urge to rush ahead. The hospital’s prostate surgery schedule was backed up by three months. They would call me. I told them to move me up if there was a cancellation. I wanted to get it over with. Until then, I would just worry about how much cancer I had, whether it had already spread, whether I had made the right choice, whether I would be impotent or incontinent or both for the rest of my life, whether the surgery would save my life or ruin it … and so on, around and around in my mind.
The next day, when I could think again, my mind was beset with questions. The main one: How could I make an informed decision about surgery and whether to sever the neurovascular bundles with so little information? Was there any other area of medicine that demanded such dire decisions with so little data? Here’s one example: surgery was not recommended for men whose cancer had already spread beyond the gland. With my cancer score low (more on this in Chapter 3), spread wasn’t likely, but we didn’t know for sure. If I underwent surgery and metastases were found, then the surgery would be for naught, and I might be left impotent and incontinent anyway.
The whole process seemed so backward, so twentieth century. With good reason, I realized, because it is the same method we’ve used since 1990. Before then, prostate cancer assessment was even more primitive.
At this point I knew the following: the amount of prostate-specific antigen, or PSA, in my blood was high, at 15 nanograms per milliliter (ng/ml). A second test indicated a PSA level of 13.4 ng/ml. A normal level is 4 ng/ml or less. The elevated amounts of PSA in my blood meant surgery or radiation was necessary. My biopsy showed a low-grade cancer on the left side of my prostate gland. However, because biopsies frequently miss areas of cancer, the cancer could also be on the right side, and it may have already spread, too. We didn’t really know.
On digital rectal exam, my prostate was smooth without any tumors palpable along the posterior side of the gland. This was good, yet the cancer could have spread in a different direction beyond the reach of the doctor’s finger. The cancer could be huge on the forward, anterior side of the gland, and we would not know it.
Multiple prostate surgeons told me that these questions do not matter, because if the biopsy detects one area of cancer, other cancers likely exist elsewhere in the gland. Pathology examinations of men’s prostate glands after surgical removal proved this. Therefore, the only reliable treatment was the complete removal of the prostate gland by prostatectomy.
This is what many urological surgeons say to their patients. In other words, the way the system works is that the doctors doing the biopsy and delivering the diagnosis are almost always urologists, many of whom are prostate surgeons. Hence, most men receive the recommendation one would expect from a prostate surgeon: prostatectomy. Yet more and more today, experts disagree with this approach. Not every diagnosis of prostate cancer requires aggressive treatment. As Prostate Cancer Breakthroughs will explain, other and often safer options do exist for the great majority of men diagnosed with prostate cancer.
If you have been recently diagnosed with prostate cancer, you might be thinking like I did—go ahead, cut out the damn cancer and be done with it. Yet even if you agree to surgery or radiation therapy, these are not always cures. The cure rate for these methods is around 75 percent. The cancer returns about 25 percent of the time. The other disturbing fact is that in doctors’ efforts to eradicate all degrees of prostate cancer, prostate surgery or radiation is frequently recommended and performed on men who don’t need these aggressive treatments. It is estimated that of the nearly 100,000 American men who undergo radical treatment for prostate cancer each year, 85,000 do not actually need it.
Where did I stand in this continuum? At this point, I didn’t know. My work in medicine has included general medicine, pain research, psychiatry, psychopharmacology, and research into how to prevent the medication side effects that kill 150,000 and hospitalize one million Americans a year. What did I know about prostate cancer? Very little.
I asked Dr. Summers, “Can we do other tests to better clarify the picture? Perhaps an MRI?” This standard test is performed in the diagnostic workups of people who undergo surgery on their knees, lungs, hearts, brains, and just about everywhere else in the body. Why not the prostate?
“Unfortunately, MRIs are not helpful for prostate cancer,” Dr. Summers explained. “The prostate is situated so deep in the pelvis, an MRI would not be able to give us a clear picture of the cancer.”
Three weeks later, I was having lunch with a group of men, none of them doctors, but instead prostate cancer survivors. I learned from them that advanced diagnostic tests do indeed exist, and the fellows encouraged me to get them. These men had been where I was now, with a cancer diagnosis and a frightening lack of details.
I got the tests, and the results changed everything for me. Six weeks from the day I received my diagnosis of cancer, I finally knew what I had, where it was, and whether it had spread. I also learned that with my low grade cancer, I had time to deliberate about the best way to proceed. In fact, most men diagnosed with prostate cancer have time to obtain other tests and other opinions and to consider multiple treatment options. In the great majority of men, prostate cancer is slow-growing and slow to spread. There is usually time to obtain a thorough medical assessment, which most men with prostate cancer do not receive today. And there is time to consider other, less invasive treatments that can remove a localized cancer with far less damage, which most men today never hear about.
Unfortunately, when most men receive the diagnosis “cancer,” their instinct is to decide quickly and try to get rid of it as soon as possible. Family members tend to think the same way. This is why so many men choose aggressive therapies such as prostatectomy or radiation treatment, each of which can cause serious, often lifelong damage to a man’s sexual functioning or bladder control.
The problem with this approach is that it provides inadequate information and leads to the overtreatment of 85,000 men annually. This is how it usually goes: Elevated PSA levels and/or abnormal digital rectal exam will lead to a “blind” biopsy. If the biopsy is positive, you have cancer. If negative, another biopsy may be recommended. A cancer diagnosis will then lead to a recommendation for prostatectomy or radiation therapy.
Sometimes, men are given a third option: watchful waiting. “Watchful waiting” means waiting passively, which is unacceptable to most men. Men diagnosed with cancer want to do something. That’s how I felt and why I placed myself on the surgery schedule. I did not want to spend the rest of my life watching and waiting and worrying about the cancer within me.
The root of the problem is that PSA levels and biopsy specimens are just not sufficient for making an accurate diagnosis of a man’s prostate cancer. Yet these are the only tools that doctors have had for the last twenty-four years and that they continue to rely on today for recommending treatment options to 240,000 men a year. When you understand the inadequacy of PSA levels and biopsy results for making accurate diagnoses, coupled with doctors’ determination to not let any man die from prostate cancer, it becomes clear why so much overtreatment occurs with this disease.
WHAT’S IN THIS BOOK
The day of “all or nothing”—radical treatment or no treatment—is ending. A better approach exists, and it is already being used in many of the most highly respected medical centers in the United States. The first few chapters of Prostate Cancer Breakthroughs, 1 through 6, will take you step by step through the new diagnostic process I recommend, with the tests you need to obtain and where you can get them. Chapter 7 describes genetically-based tests that are now available for improving the accuracy of prostate cancer biopsy interpretations, for determining the aggressiveness of a man’s prostate cancer, and for identifying the most effective drugs for high-risk prostate cancer. The introduction of genetic tests represents another breakthrough, a quantum leap in diagnosing and treating prostate cancer, and many more genetic tests will be coming soon. Chapter 8 describes the C-11 PET/CT scan, a huge advancement in the early and accurate detection of metastatic prostate cancer.
If you follow the steps I outline, you will acquire a full picture of your disease: where it is, how large it is, and whether it has spread. These are essential questions that must be answered, yet most prostate cancer evaluations today do not answer them or even try to. This may be because many urologists are not aware of, or not convinced about, the new tests I describe, so your doctor may not mention them to you. Many of you will have to learn about these new methods on your own, from a support group, from other doctors, from web surfing, or from this book.
Most doctors are sincere, yet many are conservative and cautious about change. In researching my books and medical articles on medication side effects and how to prevent them, I learned long ago that new ideas take far too long to be accepted and implemented in the healthcare world. It can take ten to twenty years for a new idea or method to be verified by studies, accepted by medical leaders, approved by their governing associations, and reimbursed by insurance companies. If you rely on what your doctor tells you, you may not learn about and obtain the new tests you need to fully know what you have. Like me, you will be asked to make an all or nothing decision about treatment with insufficient information.
Once you know the nature and extent of your prostate cancer, making a decision about treatment becomes much easier. Part 2 discusses the broad range of twelve treatment options now available for men with prostate cancer. Chapter 9 covers the more aggressive therapies, including prostatectomy and four types of radiation therapies. Non-invasive therapies, such as medication treatment and active surveillance, are explained in Chapter 10. The chapter also discusses Xofigo, a treatment for men with metastatic bone disease, as well as finasteride (Proscar), a drug that obtained recent attention as a preventative for prostate cancer—but as you will see, there is a big downside. Finally, Chapter 11 will introduce you to focal therapies, a set of newly developed, minimally invasive techniques that aim to destroy the cancer while preserving as much of the prostate and surrounding areas as possible. The focal therapies I will discuss include cryotherapy, focal laser ablation, and high intensity focused ultrasound, or HIFU.
Section 3 contains two chapters. Chapter 12, “What Does Your Data Say?” explains how to organize your test results and make a decision about treatment. Chapter 13 offers thirty questions you can ask your doctor. The questions are listed in categories, some appropriate at your first visit, others for when you are making choices about diagnostic tests, and the remainder about treatment options. You may not need to ask every one of them, and there may be other questions you want to ask about the specifics of your individual case.
Prostate cancer is the most common cancer, other than skin cancer, in men. It can be a deadly disease, killing 30,000 men in the United States and 280,000 men worldwide each year. Because of this, every case of prostate cancer today is treated as deadly. Yet, approximately 85 percent of men with prostate cancer will not die of it, so treating every case as deadly has lead to massive overtreatment and much unnecessary, often permanent pain. In the past, we have treated every case as deadly because we have lacked a way of separating the dangerous cancers from the non-threatening ones. This is why performing surgery or radiation on so many men with prostate cancer has been the accepted course of treatment, until now.
With the new tests available today, this one-size-fits-all method is no longer necessary. As prostate cancer oncologist, Dr. Mark Scholz says:
Only about one out of seven men with the disease—perhaps 15 percent—are truly at risk. New research shows that there is an indolent variety of the disease that is not life-threatening, a type that can be safely monitored without immediate treatment. The tragedy is that most men don’t know this.
How can you find out if you are in this 85 percent group that does not require depressive intervention? This is what Prostate Cancer Breakthroughs will explain.
The problem with the current medical method is that it hasn’t caught up with the new advancements. To make the right decisions, you need to have the right information. For men with prostate cancer, no easy treatment options exist. All have risks. This is why it is so important for you to obtain all of the tests necessary for defining your cancer, and as many second opinions as you need to know all of your choices.
Medically and legally, you have a right to complete knowledge of your situation. This right is called informed consent, a right written into the medical code. I have written about this issue many times. The fact is that patients rarely obtain adequate informed consent, and this is certainly the case today for most men with prostate cancer. This is why I finally decided to write Prostate Cancer Breakthroughs, to pass along what I learned and to tell you about the new tests and treatments you can get today.
With the emergence of these new diagnostic tests and treatments, a renaissance in prostate cancer is quietly underway. It is a large wave, building slowly now, that will hit the shore in full force later in this decade. Just as the last decade saw great progress in the medical approach to breast cancer, major breakthroughs are now on the verge of irrevocably changing our approach to prostate cancer.
The problem for you, as it was for me, is that if you have been diagnosed with prostate cancer, you can’t wait for the renaissance in prostate cancer to fully unfold. You can’t wait for your doctor to get up to speed in a year or two or five. You have prostate cancer now, and must make decisions now.
I encourage you to take the time to now learn about these breakthrough options in prostate cancer diagnosis and treatment. The information can expand your choices and change the course of your care for the better, as it did mine.
TO THE WOMEN WHO ARE READING THIS BOOK
Thank you. You must care very much about your husband, boyfriend, father, son, brother, or other men in your life. This is so important, because one of every six men you know or have ever known will develop prostate cancer.
Women read health books more often than men. Some men with prostate cancer are avid readers, but many men just want to “deal with it,” meaning action, meaning surgery or radiation. Some men need these aggressive therapies, but many more do not. Women reading this book can help steer their men to doctors who are informed about the new tests and treatments.
I greatly admire the work women have done during the past twenty years in raising awareness about breast cancer. Pink ribbons and breast cancer walks and fundraisers have done much to advance our knowledge about screening, testing, and treatment. Men have taken a lesson and prostate cancer support groups are growing, but we are far behind the ladies. I tip my hat.
In the great majority of cases of prostate cancer, there is time to obtain all of the useful diagnostic tests. With these, treatment decisions become easier, and for many men, safer. If some women have to push their men to follow the approach I have spelled out in Prostate Cancer Breakthroughs, you have provided your men a great service.