- What Is Prostate Cancer?
- Key Statistics for Prostate Cancer
- How common is prostate cancer?
- Risk of prostate cancer
- Deaths from prostate cancer
- Deadly Aggressive Form of Prostate Cancer Is Surprisingly Common
- Facts and Statistics
- For many men diagnosed with prostate cancer, the treatment may be worse than the disease
- Murky diagnoses
- Aggressive or slow-growing?
- Clues in diet and lifestyle
- To treat or not to treat?
- Untreated prostate cancer no death sentence
- “I’ve Been Living With Advanced Prostate Cancer for Almost 20 Years”: One Man Shares His Treatment Journey
- Riding the PSA Roller Coaster
- Reclaiming My Life—and Helping Others Do the Same
What Is Prostate Cancer?
The prostate is a gland in the male reproductive system. It makes most of the semen that carries sperm. The walnut-sized gland is located beneath the bladder and surrounds the upper part of the urethra, the tube that carries urine from the bladder.
Prostate cancer is a major health concern for American men. The disease is less common before age 50, and experts believe that most elderly men have traces of it.
The American Cancer Society predicts that 161,360 new cases of prostate cancer would be diagnosed in 2017. An estimated 27,630 men will die of it. African-American men are more likely to get prostate cancer and have the highest death rate. Other than skin cancer, prostate cancer is the most common cancer in American men. In other parts of the world — notably Asia, Africa, and Latin America — prostate cancer is rare.
Prostate cancer is usually a very slow growing cancer, often causing no symptoms until it is in an advanced stage. Most men with prostate cancer die of other causes, and many never know that they have the disease. But once prostate cancer begins to grow quickly or spreads outside the prostate, it is dangerous.
Prostate cancer in its early stages (when it’s only found in the prostate gland) can be treated with very good chances for survival. Fortunately, about 85% of American men with prostate cancer are diagnosed in an early stage of the disease.
Cancer that has spread beyond the prostate (such as to the bones, lymph nodes, and lungs) is not curable, but it may be controlled for many years. Because of the many advances in available treatments, most men whose prostate cancer becomes widespread can expect to live five years or more. Some men with advanced prostate cancer live a normal life and die of another cause, such as heart disease.
Key Statistics for Prostate Cancer
How common is prostate cancer?
Other than skin cancer, prostate cancer is the most common cancer in American men. The American Cancer Society’s estimates for prostate cancer in the United States for 2020 are:
- About 191,930 new cases of prostate cancer
- About 33,330 deaths from prostate cancer
Risk of prostate cancer
About 1 man in 9 will be diagnosed with prostate cancer during his lifetime.
Prostate cancer is more likely to develop in older men and in African-American men. About 6 cases in 10 are diagnosed in men who are 65 or older, and it is rare in men under 40. The average age at diagnosis is about 66.
Deaths from prostate cancer
Prostate cancer is the second leading cause of cancer death in American men, behind only lung cancer. About 1 man in 41 will die of prostate cancer.
Prostate cancer can be a serious disease, but most men diagnosed with prostate cancer do not die from it. In fact, more than 3.1 million men in the United States who have been diagnosed with prostate cancer at some point are still alive today.
For statistics related to survival, see Survival Rates for Prostate Cancer.
Visit our Cancer Statistics Center for more key statistics.
Deadly Aggressive Form of Prostate Cancer Is Surprisingly Common
Cancer Network spoke with Rahul Aggarwal, MD, an assistant professor of medicine in the Division of Hematology and Oncology at the University of California San Francisco. Dr. Aggarwal specializes in developing novel therapeutic and imaging strategies for patients with advanced prostate cancer. He and his colleagues recently published a study indicating that small-cell neuroendocrine prostate cancer—a deadly form of advanced prostate cancer—is more common than previously believed. The study is published in the Journal of Clinical Oncology.
—Interviewed by Anna Azvolinsky
Cancer Network: First, prior to your study, what was known about the epidemiology of prostate cancer as it relates to your research? How often are early-stage and advanced-stage prostate cancer diagnosed, and also the small-cell neuroendocrine prostate cancers that you examined in your work?
Dr. Aggarwal: Thank you for the question and for the opportunity to discuss our study. We generally think that the previously described form of small-cell neuroendocrine cancer, the type that is there at the time of diagnosis (what would we term de novo neuroendocrine prostate cancer), is quite a rare entity. There have been multiple prior publications reporting an incidence of less than 1%, so quite a small number of prostate cancer patients.
We found in our study that when we examine patients already diagnosed with prostate adenocarcinoma (the most common prostate cancer) who are subsequently treated with a series of hormonal therapies (a standard treatment for prostate cancer), the cancer becomes resistant to those hormonal therapies and spreads to other parts of the body—most commonly the bone or lymph nodes. When we biopsy tumors that reside in those new locations, we see a much higher incidence of small-cell neuroendocrine prostate cancer. So, in our publication in JCO, we report an incidence of 17%. When you compare that to the less than 1% of cases that you see at the time of diagnosis, clearly the treatment-associated or treatment-emergent small-cell neuroendocrine prostate cancer is much more common than previously thought.
Cancer Network: What made you and your colleagues initially examine the frequency of this thought-to-be-rare, small-cell neuroendocrine prostate cancer among those diagnosed with and treated for prostate cancer?
Dr. Aggarwal: It’s interesting, because this original effort was not necessarily geared at studying just small-cell neuroendocrine prostate cancer. It was really to biopsy any patient with an accessible metastatic tumor that was hormone-resistant and to understand the mechanisms of resistance: How does prostate cancer become resistant to hormonal therapy, and what are the next therapeutic targets we can go after with that information? So this was a large multi-institutional project funded by Movember, Stand Up 2 Cancer, and the Prostate Cancer Foundation.
It just so happened that, as we were doing these biopsies and having a central pathology review of them, we were noticing that we were seeing a lot more cases of small-cell neuroendocrine prostate cancers than we would have expected to see. So I think as the project grew, this became one of the central focuses of the project, to characterize the incidence of this tumor type and of course to describe the genetic and gene expression profiles of these tumors.
One of the advantages of our study is that we didn’t have any pre-selection criteria; these were not patients who were previously diagnosed with small-cell neuroendocrine prostate cancers. We really enrolled a consecutive series of patients across institutions, and the criteria were fairly broad: you had to have metastatic prostate cancer that had become hormone-resistant to standard testosterone-lowering therapy. And then we enrolled patients and did a central pathology review to really get a careful understanding of whether, in fact, the tumor looked like it had small-cell neuroendocrine features. So in some sense, there was an unbiased or less-biased approach, but we probably did still select for patients who had tumors that were accessible for biopsies. That might have enriched for a higher-risk group of patients; nevertheless, it does give a fairly true sense of the incidence of this tumor type in the hormone-resistant setting.
Cancer Network: You mentioned that this was a multicenter study and described the types of patients enrolled. Is there anything else about the design of your study that is important to mention?
Dr. Aggarwal: The study design was to take men who had been on hormonal therapy when the cancer progressed. We did standard imaging tests, which typically include a picture of the bone, as well as a CT scan to determine where all of the prostate cancer had spread. Then we would have an interventional radiologist perform metastatic tumor biopsies and review all of the scans to determine whether there was a spot that was accessible for biopsy. That, in and of itself, required a fair amount of expertise, especially with spots of cancer in the bone.
Historically, it’s been really hard to get access to these tumors in the bone because it’s just a challenging spot to biopsy. But with proper training and expertise, we were successful the majority of the time in getting tumor samples out of these metastatic bone biopsies. And that really allows us to understand the biology of the cancer at this stage. So operationally, patients were biopsied at the time that their cancer became hormone-resistant. They were subsequently followed, and that was important.
We did have every-3-month follow-up, including for long-term outcomes of survival. That is what allowed us to capture some of these outcomes in the article that we published. We captured what subsequent therapy patients received. There was the option at the time for future dates of patients to undergo a second biopsy at the time their cancer became resistant to whatever therapy was applied. That was not the focus of the publication in JCO but is an ongoing source of investigation, to really analyze patients who have these valuable pairs of biopsies at two different points in time.
Cancer Network: What are some of the important details of what you and your colleagues found when you analyzed the results?
Dr. Aggarwal: I think there are a few take-home messages. One is what we just talked about, that the incidence of small-cell neuroendocrine prostate cancers is much higher than we thought. That, in and of itself, is an important finding. Secondly, there weren’t any particular clinical features that were standouts in terms of finding these small-cell neuroendocrine prostate cancers—and to me that means we should be thinking broadly about tumor biopsies whenever a tumor is accessible, to really look for this type of tumor in the metastatic hormone-resistant setting. Previously our treatment guidelines would call for looking for this type of cancer when there were special features like cancer spots in the liver and other things that occur less commonly with prostate cancer. Our results would suggest that we should look more broadly for this type of cancer.
I think the other take-home message is that the other big theme emerging in prostate cancer is that there is a subset of probably 20% to 30% of patients with hormone-resistant advanced disease who have mutations in genes involved in DNA repair. These are genes like BRCA that we classically think of as playing a role in some breast and ovarian cancers but that are actually mutated in prostate cancer as well. One of our key findings was that finding the small-cell neuroendocrine prostate cancer was nearly mutually exclusive with finding these DNA repair mutations. So this suggests that if you think of prostate cancer as a whole pie, these might be two separate slices of the pie: distinct subsets of prostate cancer.
When we think about personalizing prostate cancer treatment, the more we can divide up the pie into distinct subsets and treat patients based on what slice of the pie they fall into, I think we are likely to see improved outcomes for patients in this setting. And then the final take-home point is on some of the work we did on the gene expression profile: what genes are turned on or off. Some of the more sophisticated gene pathway analyses pointed the way to potential treatment targets for this group of patients. There is ongoing work as a follow-up to the study, to develop clinical trials and new medicines particularly based on the data from this study. to improve outcomes and to conduct clinical trials specifically for this group of patients, to see if we can make an impact.
Cancer Network: Anything else on the implications of this work? What else are you and your colleagues doing now to follow up on these results?
Dr. Aggarwal: I think the clinical trial piece is important here. And also the broadening of these results and the implications beyond just for academic institutions that have expertise in doing these types of biopsies—to really find noninvasive markers of this disease. Are there imaging tests or blood tests that could pick up this type of prostate cancer? That would , as it would make this diagnosis a lot easier rather than having to do tumor biopsies on every patient, because there are certainly many patients who don’t have a lesion that we could biopsy.
So we are probably missing patients to study when we rely solely on biopsy. There is a lot of work ongoing to really understand that piece of this, to expand detection to a broader patient population. That would be enormously beneficial for detecting this, as well as thinking about how we could efficiently accrue patients for clinical trials. The more easily we can find these tumors, the less invasively we can find them, the better these types of studies will and ultimately at impacting outcomes for this group of patients.
Facts and Statistics
Every 16 minutes another American man dies from prostate cancer. That’s a little more than 91 deaths per day and 33,330 this year. That’s enough to fill an entire baseball stadium.
One in nine American men will have prostate cancer during his lifetime. Prostate cancer is the leading cause of cancer death among American men and is the most commonly diagnosed. The American Cancer Society estimates in its Cancer Facts & Figures 2020 report that 191,930 men will be told they have prostate cancer in 2020. Currently there are nearly 3.1 million American men living with the disease – roughly equal to the population of Chicago.
Early detection and advances in treatment are saving lives. Finding prostate cancer when it is still at an early stage offers the best hope for living cancer free for a long time. The most recent research shows the five-year survival rate for all men with prostate cancer is nearly 100 percent. The relative 10-year survival rate is 98 percent, and 96 percent for 15 years.
You can learn more about how prostate cancer affects American men by downloading our infographic, American Men and Prostate Cancer By the Numbers, by clicking on the image to the left.
All men are at risk of developing prostate cancer but that risk increases significantly as men grow older. The table below shows the most recent prostate cancer statistics by age. Information for this table comes from Cancer Facts and Figures, and the percentages below are from State Cancer Profiles.
Unfortunately African American men are considered ‘high risk’ for developing prostate cancer and dying of the disease. The table below shows the most recent prostate cancer statistics for new cases and deaths by race in the U.S. for the years 2013 – 2017 (incidence) and 2013– 2017 (mortality). Information for this table comes from Cancer Facts & Figures for African Americans.
Learn more about the disproportionate impact of prostate cancer on African-American men by downloading our more in-depth infographic, African-American Men and Prostate Cancer By the Numbers.
The high survival rates for prostate cancer continue over time. The overall 10-year survival rate is 98%, and the 15-year survival rate is 96%. However, for “distant” prostate cancer, or cancer that has spread to bones, organs, or distant lymph nodes, the 5-year survival rate drops from nearly 100% to 30%. “Distant” prostate cancer is more commonly known as advanced prostate cancer. Information for the table below comes from Cancer Facts & Figures.
For many men diagnosed with prostate cancer, the treatment may be worse than the disease
To screen or not to screen? For prostate cancer—the second leading cause of cancer deaths in men, after lung cancer—that is the bedeviling question.
The dilemma springs the wide variation in the potential of prostate cancers to spread to the rest of the body. The vast majority of these malignancies, especially those discovered with the extensively used prostate-specific antigen, or PSA, test, are slow-growing tumors that are unlikely to cause a man any harm during his lifetime. Yet in 10 to 15 percent of cases, the cancer is aggressive and advances beyond the prostate, sometimes turning lethal.
The dilemma has become more urgent in recent years as widespread screening with PSA in the U.S. and around the world has led to a sharp increase in the number of detected prostate cancers. Currently, there is no way to accurately determine at the time of diagnosis which cancers are likely to threaten a man’s health and which are not. As a result, almost all men with PSA-detected cancer opt for treatment, which can leave long-lasting physical and emotional scars.
“One of the biggest challenges in oncology is to distinguish men who have a potentially lethal form of prostate cancer from those with a more slow-growing disease.”
—Lorelei Mucci, ScD ’03, associate professor of epidemiology
Put simply: with prostate cancer, the cure may be worse than the disease. The dilemma was underscored in May 2012, when the U.S. Preventive Services Task Force (USPSTF) issued a strongly worded final recommendation against PSA-based screening for prostate cancer. According to the task force, “any men are harmed as a result of prostate cancer screening and few, if any, benefit.” In a study of U.S. men who were randomly screened, the screening did not reduce prostate cancer death (though a similar study among European men did find a lower risk of cancer death). In any case, experts agree that prostate cancer has been vastly overdiagnosed as a result of screening.
So what should patients and doctors do? At Harvard School of Public Health, the prostate cancer epidemiology team—which includes more than 25 faculty, postdoctoral fellows, and student researchers—is developing the science to answer that question, identifying both the risk factors behind the deadliest variations of prostate cancer and the lifestyle changes that may lower the risk of aggressive disease.
“One of the biggest challenges in oncology is to distinguish men who have a potentially lethal form of prostate cancer from those with a more slow-growing disease,” says Lorelei Mucci, associate professor of epidemiology at HSPH. “Our research aims to directly address that question, as well as to find opportunities to reduce risk of dying from cancer after diagnosis.”
Aggressive or slow-growing?
When it became widely available in the late 1980s, the PSA screening test was hailed as a simple way to uncover possible malignancy. But PSA screening, which was adopted without evidence of its usefulness, turned out to be a poor indicator of cancer, in two ways. First, it creates false positives in men who may simply have elevated antigen levels from other conditions, such as benign enlargement of the prostate gland. These patients often endure subsequent invasive biopsies but never go on to develop prostate cancer. Second, even when the test correctly identifies prostate cancer, many of the diagnosed patients never develop the deadly form of the disease.
“PSA screening has been a disaster,” says Hans-Olov Adami, former chair and now adjunct professor of HSPH’s Department of Epidemiology, who has opposed the test for 20 years. “We overdiagnose many men who would die of other causes.” In fact, a multinational study of cancer registries published by Adami, Mucci, and other HSPH colleagues in July 2012 found that the most common causes of death among prostate cancer patients—65 percent of patients in Sweden and 84 percent in the U.S.—are heart disease, diabetes, stroke, or other cancers.
What may protect against advanced prostate cancer?
- PHYSICAL ACTIVITY
- AVOIDING SMOKING
- AVOIDING OBESITY
- CONSUMING TOMATO SAUCE
- CONSUMING COFFEE
- VITAMIN D
Yet these patients frequently underwent radical treatments for their prostate cancer—interventions such as radiation, surgery, and chemotherapy, which can produce severe side effects such as incontinence and erectile dysfunction. “While we are uncertain about the number of deaths that screening prevents,” says Adami, “we are certain that the price for any reduction in deaths from prostate cancer is very high.”
A study published in August 2012 in the New England Journal of Medicine found no difference in survival between men who had surgery for prostate cancer and those under “watchful waiting,” in which the doctor withholds treatment while carefully monitoring the progress of the cancer. “This is a very perplexing observation,” Adami says, “because screening reduces mortality only if treatment makes a difference in outcomes. This indicates there are still big question marks in how doctors and patients should respond to this diagnosis.” As the USPSTF noted last May, “esearch is urgently needed to identify new screening methods that can distinguish nonprogressive or slowly progressive disease from disease that is likely to affect quality or length of life.”
“ Men with at least three hours of vigorous physical activity a week had at least a 60 percent lower risk of prostate cancer death.”
—Edward Giovannucci, professor of nutrition and epidemiology
Clues in diet and lifestyle
To clarify the prognosis for a tumor, HSPH researchers are homing in on other factors that might affect susceptibility to prostate cancer, especially the aggressive form of the disease. Edward Giovannucci, professor of nutrition and epidemiology, recently looked at nine diet and lifestyle factors. He found that smoking, obesity, and lack of physical activity raise the risk of developing a more virulent cancer. According to Giovannucci, “The question is whether there are two types of prostate cancer–an aggressive and nonaggressive form–or whether certain factors cause a nonaggressive form to become more aggressive.” Evidence provided by HSPH researchers suggests that an increase in insulin in the bloodstream, caused by obesity and physical inactivity, may encourage tumor growth.
Other investigations have linked dietary factors to the disease. A 2011 study by HSPH research associate Kathryn Wilson, together with Mucci and Giovannucci, professor of nutrition and epidemiology Meir Stampfer, and other colleagues, found that men who drank coffee had a notably lower risk of aggressive prostate cancer. Those who consumed six cups or more a day were 20 percent less likely to develop any form of the disease, and 60 percent less likely to develop a lethal disease; those who consumed one to three cups a day showed no difference in developing any form of the disease, but had a 30 percent lower risk of developing a lethal form.
Jennifer Rider, instructor in epidemiology at HSPH, has studied parasitic infection and prostate cancer.
Another, more surprising, study revealed that consuming tomato sauce was associated with a markedly lower risk of prostate cancer. In fact, men who had two or more servings of tomato sauce a week were about 20 percent less likely to develop prostate cancer, and about 35 percent less likely to die from the disease. A separate report in 2009 by Mucci and Giovannucci found that the overgrowth of blood vessels might be one of the most reliable indicators of whether a tumor will spread. After sifting through genetic and lifestyle factors that might lead to the growth of these vessels, they found that the antioxidant lycopene was the item most strongly associated with lower blood vessel formation.
Another factor that might determine the difference between a harmless and a lethal form of prostate cancer is the sexually transmitted parasitic infection Trichomonas vaginalis. By itself, the infection rarely produces symptoms in men (who are often treated only after their female partners show signs of infection). In a 2009 study, led by HSPH instructor in epidemiology Jennifer Rider, infected men had a much higher incidence of prostate cancer spreading to the bone or death from prostate cancer. “The good news is that if the association between the infection and lethal prostate cancer is confirmed, there is an effective antibiotic treatment,” Rider says.
To treat or not to treat?
“Up until now, with a few notable exceptions, doctors have myopically focused on treating prostate cancer,” says Adami. “They are willing to spend tens of thousands of dollars on chemotherapy that has minimal effects on cancer mortality, often with substantial side effects. But we ignore entirely the fact that large groups of prostate cancer patients die from other causes that actually are preventable.”
By focusing on lifestyle changes, he adds, men can achieve three goals simultaneously: diminishing the risk of dying from common conditions such as heart disease and diabetes, improving quality of life overall, and perhaps also improving the prognosis for prostate cancer. In particular, stopping smoking and increasing physical activity after diagnosis can substantially cut the risk of developing aggressive prostate cancer. “Men with at least three hours of vigorous physical activity a week had at least a 60 percent lower risk of prostate cancer death,” says Giovannucci. “It’s a strong association.”
Among older patients especially, that activity can take the form of vigorous walking. Recently, Mucci has spearheaded an intervention with Adami and other colleagues in Sweden, Iceland, and Ireland in which men walk in groups with a nurse three times a week. In a pilot study, researchers found improvements in just 12 weeks in body weight, blood pressure, sleep, urinary function, and mental health.
Scientists at HSPH are also searching for genetic and lifestyle markers that help predict how aggressive a patient’s prostate cancer will be. For example, an ongoing project led by Mucci and Adami draws on detailed cancer registries in Nordic countries, including an analysis of 300,000 twins, to tease out the relative contribution of different genes to prostate cancer incidence and survival.
Until all these associations come to light, doctors and patients will be confronted with weighty decisions about treatment. Surgery, radiation, or chemo might still be the wisest course of action in instances where the cancer has clearly already advanced, or when a patient is young and otherwise in good health. In situations where men are older or face a higher risk for other diseases, improvements in diet and lifestyle may be more effective not only in subduing the cancer but also in boosting general well-being. As Mucci puts it, “Our hope is that clinicians will use the prostate cancer diagnosis as a teachable moment to reflect on the global health of the patient.”
Michael Blanding is a Boston-based journalist and author of The Coke Machine: The Dirty Truth Behind the World’s Favorite Soft Drink.
Untreated prostate cancer no death sentence
NEW YORK (Reuters Health) – Even without treatment, only a small minority of men diagnosed with early-stage prostate cancer die from the disease, Swedish researchers reported Friday.
Drawing from a national cancer register, they estimated that after 10 years prostate cancer would have killed less than three percent of these men.
“What the data is showing is that for most patients with low-risk cancer, there is no need to panic,” said Grace Lu-Yao, a cancer researcher who was not involved in the new study. “Prostate cancer really is no longer a fatal disease.”
With modern screening tests, said Lu-Yao, of the University of Medicine and Dentistry of New Jersey in New Brunswick, many prostate cancers are found that might never have developed into serious disease. In such cases, the slight reduction of risk by surgically removing the prostate or treating it with radiation may not outweigh the substantial side effects of these treatments.
In the Swedish study, published in the Journal of the National Cancer Institute, researchers compared deaths among more than 6,800 men with prostate cancer who underwent treatment — surgery or radiation — or were simply monitored regularly by their doctors, the so-called “watchful waiting” approach. With watchful waiting, patients are only treated if their cancer progresses.
The men, who were younger than 70, had low- or intermediate-risk cancers, as judged by several factors, including blood levels of prostate-specific antigen (PSA) and Gleason score, a measure of abnormal cells in the prostate.
After about eight years, 20 percent of the men in the watchful waiting group had died, almost twice as many as in the treatment group. However, the number of deaths was no different than what would be expected in the general population. Less than three percent had actually died from prostate cancer, and those who weren’t treated turned out also to be sicker in the first place.
The researchers calculated that of those men with low-risk cancer, 2.4 percent would die from the disease within 10 years without treatment. While this number was about three times higher than in men who had had surgery or radiation therapy, it wasn’t clear how much of the difference was due to worse general health in the men who didn’t get treatment.
The Swedish findings jibe with earlier results, including a large US study.
Given the overall low death risk, the researchers said watchful waiting “appears to be suitable” for many men with low-risk prostate cancer.
Instead of panicking, Lu-Yao said, men diagnosed with this type of cancer should see it as “a wake-up call, an opportunity to improve their health,” for instance by exercising more and eating a more healthy diet. That, she said, was much more likely to influence their chances of living a long life.
SOURCE: and Journal of the National Cancer Institute, online June 18, 2010.
Our Standards:The Thomson Reuters Trust Principles.
here is no way to prepare for the moment a doctor looks you straight in the eyes and tells you, “You probably have five years to live.” Or the next moment, when he slams his fists on his desk demonstratively and says, “You need surgery immediately.”
I know this because it happened to me, 18 years ago, after a biopsy of my prostate turned out to be positive for cancer.
I was 54 years old, and seemingly healthy as could be. I was running two successful businesses, playing tennis three times a week, and boating and fishing in my spare time. Life was great.
But when I applied for a life insurance policy—and was denied because of a high PSA (prostate-specific antigen) level in my blood, a possible indicator of prostate cancer—everything changed. I went to see the urologist, had a biopsy and found out I had moderately aggressive prostate cancer. Back then, hearing the “C” word—cancer—was like getting a death sentence. I went numb.
In the weeks that followed my diagnosis, I remained numb. I remember driving home from work a few times and completely missing my exit—I was so deep in worry and anxiety.
I was also shrouded in shame.
One of the first things I did after my diagnosis was write to the National Institutes of Health, the Prostate Cancer Foundation and the American Cancer Society. Back in 2000, the internet wasn’t what it is now, and I wanted as much info as I could possibly get my hands on in order to educate myself about this disease and my treatment options. Yet I was so intent on keeping my diagnosis as private as possible that I actually rented a post office box two towns away and had all of the info I was requesting sent there.
Riding the PSA Roller Coaster
Once I’d read up on my options, I decided to hunt down the best doctors I could find. I’m lucky in that I live just south of Boston, where there are major medical centers. I made appointment after appointment to get as many opinions as possible, before I landed on a Harvard Medical School-trained doctor who recommended hormone therapy, coupled with external beam radiation—a combo plan that would reduce the size of the cancer to make it an easier target for the radiation.
On December 1, 2000, I started the hormone treatment; between December 1, 2000, and January 31, 2001, they did the radiation.
Immediately after this treatment, things were looking good. My PSA levels dropped, which is what we wanted. When the prostate produces more PSA, it may indicate a problem, such as the potential development or growth of cancer—so low is better. In fact, my numbers stayed lower for the next five years.
Then my PSA levels started to rise. The docs just wanted to keep an eye on it for a while. They were concerned, but not overly so. After a few months of this watchful waiting, my team—a radiation oncologist, urologist and medical oncologist—told me I needed surgery to remove my prostate. And once again, I sat across from a urologist as he looked me straight in the eyes and said, “I can’t give you a cure, but I can give you a treatment.”
I was left with no choice but to do what docs call watchful waiting and what I call anxiety-provoking waiting. My PSA was constantly rising, yet my cancer wasn’t metastasizing and there was no evidence of a tumor.
I had what they call a salvage radical prostatectomy, which is, generally, a complex surgery where they remove the prostate, adjoining seminal vesicles and surrounding lymph nodes. For a year after that surgery, there was no PSA detected in my blood—which is what’s supposed to happen once your prostate gland is gone.
But, yet again, there was evidence of my PSA rising. My urologist told me he thought the disease had progressed—and my oncologist told me there was no drug available for someone in my situation. My cancer hadn’t reached the point of metastasizing, or spreading, to other organs, but it also wasn’t gone completely.
I was left with no choice but to do what docs call watchful waiting and what I call anxiety-provoking waiting. It’s like waiting for a nuclear bomb to go off. My PSA was constantly rising, yet I was having bone and CT scans every 90 days, and my cancer wasn’t metastasizing and there was no evidence of a tumor.
Reclaiming My Life—and Helping Others Do the Same
Ron Scolamiero and his wife, Laurie, with two of their sons, Nick (left) and Michael (right)
This went on until 2012, when my oncologist said he was part of a clinical trial for prostate cancer patients like me living with non-metastatic castration-resistant prostate cancer. I was lucky in that my doctor was the lead physician on the second phase of this trial. After I began the treatment, my PSA levels held steady, and there was no evidence of the cancer spreading.
Since then, I’ve had two tumors appear where my prostate used to be—and surgeries to remove them, which have resulted in a whole lot of difficulty with my ability to urinate—but no tumors have spread throughout my body. I have continued taking the drug, and I felt incredibly grateful when it was approved by the FDA.
I’m 73 now, a father of five sons and grandfather of three. Most days I don’t even think I have cancer, even though I still take my pills every morning. Thanks in large part to my wife, Laurie, I have managed to live my life as if I didn’t have this disease. And even though it is always lurking in the back of our minds, we don’t let it get to the forefront to take over our lives.
What is at the forefront for me is doing whatever I can to help other men facing a prostate cancer diagnosis. I’ve come a long way since those early days of shame, traveling two towns over to get my prostate cancer mailings.
In fact, I recently filmed a video for the American Association for Cancer Research, and I’m going to be featured on My Prostate Cancer Roadmap, a website for patients and caregivers that explores the complexities of diagnosing, treating and living with prostate cancer.
I’m anything but a hero. I’m simply a patient who had the great fortune of finding doctors who’ve taken care of me, and having a wife and family who’ve helped me keep a positive attitude through it all.
And my hope is that, by sharing my story, I can help other men realize it’s OK to talk about their diagnosis of prostate cancer, and ask for help when trying to figure out their way forward.
Nearly 30 years after it began, a study of prostate cancer patients shows both that the disease will not cause harm to the majority of men who have it, and that aggressive treatment is warranted for men with an intermediate risk of spread.
The nuanced results come from a new update to a landmark study, published Wednesday in the New England Journal of Medicine, that has followed 695 Swedish men since they were diagnosed with localized prostate cancer between October 1989 and February 1999.
The study’s duration and insights into one of the most common forms of cancer make it “arguably one of the most important publications of the year,” said Dr. Adam Kibel, a professor of surgery at Harvard Medical School and chief of urology at Brigham and Women’s Hospital in Boston, who is not involved in the research.
Half of the men had their prostates removed to get rid of the cancer, and half were put on “watchful waiting,” a now-discredited approach that essentially amounted to doing nothing.
Today, roughly 20 percent of the men are still alive, although prostate cancer is generally diagnosed late in life. Of those who died, 70 percent died of something other than prostate cancer, the study found.
“Which really reminds us that we should try to treat only those who will benefit, who have a lethal disease and who are healthy enough to otherwise be able to die from prostate cancer,” said Dr. Anna Bill-Axelson, the study’s first author and an associate professor in urology at Uppsala University in Sweden.
Overtreatment is an issue because radical prostatectomy and similar therapies often cause side effects, Bill-Axelson said, most commonly erectile dysfunction and urinary leakage.
In Sweden today, 80 percent of men with newly diagnosed prostate cancer are not treated, but “actively surveilled,” to make sure their tumor is not becoming more dangerous, Bill-Axelson said. Active surveillance includes regular checkups, whereas with “watchful waiting,” follow-ups were often deferred until a man had symptoms. “The majority who are diagnosed today are diagnosed so early from PSA detection and also have usually low-risk disease. They will very likely be overtreated if they are treated immediately.”
Two American experts saw the study’s results differently: as further justification to treat intermediate prostate cancers as aggressively as possible.
The study’s take-home message is: “If you live a long time, you’re likely to live longer if you get treated than if you don’t,” according to Dr. Anthony D’Amico, chief of genitourinary radiation oncology at the Dana-Farber Cancer Institute and a professor at Harvard Medical School, both in Boston.
Men with a result of 7 on a test called the Gleason score, who are today considered at intermediate risk, should be treated, and should not wait to see if their tumors become more dangerous, D’Amico said.
“This study proves that if a man’s going to live 20-25 years and he’s got intermediate prostate cancer, he has an opportunity to save his life,” D’Amico said.
According to the study, those men who had a radical prostatectomy at the start of the study lived an average of 2.9 years longer than men who got no therapy. But that really means more men in the treatment group were able to live out their natural lives, while men who got watchful waiting died early, D’Amico said.
D’Amico also highlighted what he called “a pretty striking statistic”: that just eight men needed to undergo treatment to save one life, according to the study. For comparison, 233 women in their 60s would need to get a mammogram to prevent one of those woman from dying of breast cancer, according to a 2012 study.
Kibel, the Brigham and Women’s urologist, said the Swedish study has been “central to our understanding of how we manage prostate cancer,” for decades, and confirms that many patients benefit from aggressive treatment.
The Swedish study was started so long ago that men didn’t routinely get PSA tests to diagnose prostate cancer, as they often do today. Routine PSA screening can overdiagnose cancers that won’t turn lethal. But combined with their Gleason score — and maybe someday with a diagnostic MRI — men should be able to figure out whether their cancer is advanced enough to warrant treatment, or to monitor it to make sure it isn’t turning more aggressive, Bill-Axelson said.
A man’s health and his disease risk — not his age — should be the determining factors in whether he should be treated for prostate cancer, Bill-Axelson said. When asked whether an 80-year-old should be treated, she said, only half-joking: “If he comes with his parents, it’s a good idea.”