Raising prostate cancer awareness among African Americans: Two patients’ stories

Chances are, if you randomly asked men on the street about their lifetime risk of being diagnosed with prostate cancer, you’d be met with a handful of blank stares and several incorrect guesses. Probably only a few people, such as health care workers and cancer researchers, would know the correct answer: based on rates from 2004 to 2006, nearly 16% of males born today will be diagnosed with prostate cancer at some point in their lifetime. Expressed another way, one in six will be diagnosed with the disease.

A specific individual’s risk of prostate cancer may vary, however. For example, as a man ages, his chances of developing the disease increase. Two other factors affecting risk are race and family history. African American men are about 1.6 times more likely to be diagnosed with prostate cancer than white American men, and 2.6 times more likely than Asian Americans. They are also more than twice as likely as white men to die from it. Men who have a first-degree relative (father or brother) with the disease are two-and-a-half times more likely to develop it themselves compared with someone with no family history of the disease. The risk is five times greater for men with two or more affected first-degree relatives. But one study showed that only 31% of men ages 40 or older have been asked about their family’s medical history by their doctor.

To highlight differences in prostate cancer risk and what they might mean in terms of cancer screening, two African American men, both of whom have survived the disease, agreed to share their stories:

• Walter Carrington, former United States ambassador to Senegal and Nigeria. A nonresident fellow at Harvard University’s W.E.B. DuBois Institute of African and African American Research, he is writing a book on Nigeria.
• Thomas A. Farrington, founder and president of the Prostate Health Education Network (PHEN), a nonprofit organization dedicated to increasing prostate health education and awareness among African American men. He has authored two books on prostate cancer: Battling the Killer Within and Battling the Killer Within and Winning.

In addition, the men offer their ideas for increasing awareness of the disease among those who are most at risk. (Note: Many patients use a pseudonym in medical articles to protect their privacy. For this piece, the men opted to use their real names.) Marc B. Garnick, M.D., moderated the discussion.

Before you were diagnosed with it, did you know that prostate cancer disproportionately affects African American men?

CARRINGTON: No. In fact, I didn’t know much about the disease at all.

Did your primary care physician take a family history or talk to you about prostate cancer?

CARRINGTON: I had come back from Nigeria on leave, and my doctor in Washington, who is himself African American, gave me a PSA test. I guess he had been doing the test regularly, but I just hadn’t paid much attention. He said he was concerned because my PSA level had gone up. I was on my way back to Nigeria, so he told me to have the embassy doctor there monitor it and, if it continued to increase, to have a biopsy. When I told the embassy doctor what my PSA was, he said, “Oh, that’s nothing! I don’t get worried until it gets to about 10 ng/ml.” That’s when I knew I was in trouble.

And what about you, Mr. Farrington?

FARRINGTON: My father and both of my grandfathers died of the disease, but I was not really aware of my own risk. In fact, I don’t ever remember having a conversation with my doctor about my risk for prostate cancer or how prostate cancer affects African American men. But when my PSA hit a certain level, he did tell me that it was high, and he suggested that I have a biopsy.

Did your doctor ask about family history? Was he aware that you had relatives with the disease?

FARRINGTON: I’m not sure. I’ve seen the same doctor for 28 years, so I don’t remember if we ever went through that or not.

Do you think that African American men are better informed now about the fact that the disease disproportionately affects them?

FARRINGTON: There’s certainly more awareness now than in the past, but we work with a number of men who don’t know a thing about the prostate. So, I think there’s still a major need for education on this topic. Personally, I think that all African American men should be made aware of their increased risk for prostate cancer and that they should be screened on a regular basis, starting no later than age 40. [This runs counter to what prominent medical organizations recommend. See “Prostate cancer screening: What’s recommended.,” below.]

CARRINGTON: This discussion relates to two studies published in The New England Journal of Medicine earlier this year, one of which concluded that PSA screening probably doesn’t save lives. [See “PSA screening and mortality studies,” below.] I think this conclusion is problematic because there weren’t many African American men in the studies. So, I agree with Tom. I think that the PSA test should be administered widely, especially in the black community because that’s the community with the highest risk.

In my experience, knowledge and understanding of prostate cancer is really low among people who have never had it and among people with relatives who have never had it. That’s true among both whites and African Americans. Most people don’t learn anything about the disease until they get it — or someone they know gets it. And when they are diagnosed, I don’t think they hear the word “prostate.” They hear the word “cancer” and think that they have received a death sentence. What’s important to realize is that prostate cancer is one of those cancers that, when caught early, has a rather low risk of mortality.

How advanced was your cancer when it was finally diagnosed?

FARRINGTON: In fairness to my primary care doctor and to Walter’s, they did their jobs. When the PSA started to move significantly, they took the appropriate action. Admittedly, my PSA did rise three years in a row before that, but we just didn’t focus on it. So, when I was diagnosed, I had a PSA of 6.4 ng/ml and Gleason score of 7. I had a lot of concerns about how bad the cancer might be at that point, and I wondered whether I would’ve been in a better situation if we had focused on it a couple of years earlier.

CARRINGTON: I was fortunate because my PSA level was much lower than Tom’s. When I finally came back from Nigeria, my doctor did another PSA test, and it was 4 ng/ml. He then sent me to have a biopsy right away. So, he was very aware of my disease risk; he saw a rise in my PSA and told me that I needed to do something about it.

How did you react to being diagnosed with prostate cancer? What was your treatment like?

FARRINGTON: Since no man in my family has survived cancer, the first thing I thought when I heard “prostate cancer” was that it was a death sentence. There was a lot of fear and concern, and it really knocked me down. But once I got up off the floor, I started seeing different doctors. My urologist recommended a radical prostatectomy. I got a couple of other opinions from other urologists, and they had the same recommendation. I then began to do some research on my own. I took a fair amount of time to try to understand the disease, how advanced mine might be, and the pros and cons of the various treatments.

I ended up choosing to go to Radiotherapy Clinics of Georgia in Atlanta for specialized radiotherapy and external beam radiation treatment. I had to take two months off. Never in my life had I had two months on my own with nothing to do. The treatment only took about an hour a day, so I had a chance to study the disease further. I visited the American Cancer Society’s headquarters, which is also in Atlanta, talked with people there, and got additional information from them.

My treatment was noninvasive, and I never experienced a single sick day from it. I was very active, played a lot of golf, went out socially, and turned it into a learning experience. So, believe it or not, my treatment was almost fun. The time after the diagnosis was horrific, but the treatment was not hard.

CARRINGTON: Like Tom, I was worried when I heard the diagnosis. I started looking back on my life, not knowing how much time I was going to have left. I went to see some specialists and found that if I was meeting with a urologist, his immediate recommendation was to have surgery. If I was meeting with a radiation oncologist, her recommendation was to have radiation therapy. It was all rather confusing.

One thing that was extremely helpful to me was attending a prostate cancer support group here in Boston. I was able to talk with other people who had gone through treatment. That helped me put things into perspective and make a decision about my treatment.

How did you get involved with the support group? Can you talk a little more about how it helped you?

CARRINGTON: I don’t remember exactly how I found out about it; one of my doctors must have recommended it. But I went to one of the meetings and saw all of these men who had been going through the same thing. That was encouraging for me, because I saw that they had survived. And there was lots of information available. They had pamphlets, newspaper articles, and scientific studies that we could take to read, and all kinds of suggestions about where to get more information. They also had doctors speak to the group. I would have been very confused about all of my options without that group.

Did you get involved in any support groups, Mr. Farrington?

FARRINGTON: Not initially, no. But in Atlanta, the radiotherapy clinic had a support group. Men were coming there from all over the world, and we met almost every day to talk about prostate cancer and issues related to our treatment. It was almost like a prostate cancer university, because I learned about the disease and how to deal with it. I realized that I wasn’t necessarily going to die of prostate cancer, and looking around, I thought, “Hey, we’re all doing pretty well here.” That experience was really the impetus for me to found PHEN.

Tell us about PHEN. Where did you get the idea to start it?

FARRINGTON: While I was in Atlanta, I started writing a book. I sat down with a number of men and interviewed them about their experiences with prostate cancer — how they came to be diagnosed and how they decided upon a treatment. In 2001, a year after I finished treatment, my book, Battling the Killer Within, was published.

After that, I began to talk to more and more people about prostate cancer. I really wanted to increase knowledge about the disease, especially among African American men. I approached different organizations about embedding my initiative in their work. But when I couldn’t find an organization that I thought would make this work a priority, I established PHEN. That was in 2003, three years after I completed my treatment.

What is PHEN’s mission?

FARRINGTON: We focus on education and awareness of prostate cancer and outreach to African American men. First, we talk to healthy men, men who haven’t been diagnosed with cancer, to try to make them aware of their risk and to help them understand the importance of early detection. Second, we support prostate cancer screening. We don’t have our own screenings, but we work with a Harvard-affiliated institution and support its screening activities. We also have a support group that we formed in collaboration with that institution. It’s open to anyone in the Greater Boston area, but we focus on African American men. We try to reach out to men in the community and help them understand their treatment options. After their treatment, we say to the men, “We want you to join in our activities. Help us reach out to other men in the community and teach them about prostate cancer.”

Does PHEN receive government funding?

FARRINGTON: We receive nothing from the government. We’ve funded PHEN though contributions and by finding sponsors for our events.

Tell us about some of PHEN’s activities. What have you achieved?

FARRINGTON: Well, we have a monthly radio program, so we’re able to reach out to a broad audience. In June 2009, we did a Father’s Day rally with 33 churches in Massachusetts to heighten prostate cancer awareness. We met with the pastors from these churches, and they talked about it as part of their services. We provided information for them that they could pass out to their congregation. We didn’t just target the men in the congregation. We included women so that they would be aware of the risk their male relatives face and let them know that prostate cancer is an epidemic in black communities.

We also have an advocacy program. Every September, we host a summit in Washington to try to educate members of Congress, especially the Black Caucus, about the disease and the need for them to help us educate the people in their districts. We’ve really tried to engage political leaders in our battle against prostate cancer.

Do you record those sessions or keep transcripts? Readers might be interested in seeing what has been discussed.

FARRINGTON: We videotape all of the sessions and create what we call PHEN TV programs. We put them on DVDs and send them out to community television stations all around the country. So far, we have about 23 stations that play PHEN TV programs on a regular basis. People can also watch the proceedings and TV programs on our Web site, www.prostatehealthed.org. That’s part of our educational mission. The sessions in Washington aren’t just for the people who attend; people all over the country learn from them.

Earlier, Mr. Carrington mentioned the studies on PSA screening and mortality that were published in The New England Journal of Medicine in March 2009. What did you both think of those studies and the subsequent media coverage?

CARRINGTON: I read the studies and the extensive news reports about them, and I found the news reporting disturbing because they really diminished the importance of the PSA test. I think a lot of people were left with the impression that they have more to risk by taking a PSA test than they have to gain. The test doesn’t always accurately indicate who has prostate cancer and who doesn’t, but my feeling is that until we come up with a better way to alert people that they might have prostate cancer, we need to use it. And I agree with Tom that African American men should be getting this test annually, starting in their 40s.

FARRINGTON: There were two studies, and I reviewed them carefully. I think the European study was much better done than the American study. I thought the American study was flawed in many ways. First, the people in that study were predominantly low-risk white men who were 55 years of age and older. Only 4% of the men were African American, and only 7% of the men had a family history of the disease, which isn’t representative of the entire population. And these are the men who have the highest risk of developing the disease.

So you’re saying that because high-risk men weren’t adequately represented in the study, the results are skewed?

FARRINGTON: Correct. The people most likely to be diagnosed with prostate cancer have largely been left out of the study — black men and men of all races with a family history of the disease. If you leave out those people and include men ages 55 and over who don’t have prostate cancer or a family history of prostate cancer, I don’t think you could come up with any other result.

In your opinion, what were some of the other flaws of the American study?

FARRINGTON: Well, it was contaminated, meaning a high percentage of men in both arms of the study were screened. The men in the screening arm of the study were supposed to be screened annually, and about 85% of them were. Those in the control arm were to receive their regular care, which could include screening. In the first year, I think about 40% had PSA testing, and that went up to about 52% by the sixth year of the study. That much screening in the control group could water down the evidence for the beneficial effects of screening.

Also, the media coverage implied that the men in the screening group were screened and the men in the control group weren’t screened; that wasn’t the case. More than half of the men in the control group were screened. And the media coverage implied that the men in the screening arm received treatment and that the men in the control arm did not. Again, that’s just not true.

Those are important points. There’s no question that the issue of contamination, as well as the fact that some of the men in the control group had prostate biopsies before the study started, makes it more difficult to interpret the findings.

FARRINGTON: That’s right. And that’s why I think people shouldn’t place so much importance on these studies.

But the fact that they were published in The New England Journal of Medicine, one of the most respected medical journals in the world, surely gives some credibility to the findings.

FARRINGTON: Of course. I just think the press was irresponsible in not understanding the limits of the studies. They left people thinking that if they weren’t screened, they’d be just as well off as people who were screened. But the studies never showed that, and they never said that.

How can physicians and medical organizations better direct their educational efforts toward African American men? How can we help them better understand their risk of being diagnosed with prostate cancer and the potential risks and benefits of PSA screening?

CARRINGTON: I think that community activities like the Father’s Day talks PHEN organized are extremely important when it comes to getting the word out. It’s too bad that we don’t have the resources to do this much more often and with more groups around the country. Medical centers around the country should reach out to the African American community to find people and groups with whom they can work to develop an educational program that is held regularly. Prostate cancer is a disease that most people just don’t appreciate. It doesn’t have any warning signs like other diseases, at least not until it’s very advanced. Until you or someone you know comes down with it, you just don’t think about it.

FARRINGTON: Having done educational events for a number of years, I’ve learned a few things. Number one: you have to include the wife and the women in the family, not just the men. Number two: if you hold a meeting for men only, you might not have great attendance. So in 2008, we unveiled our Rally Against Prostate Cancer program. It’s designed to raise awareness and provide information to men wherever they are — at church, at work, online, watching television. It’s rooted in having a group of survivors take our information to their churches and other organizations. It’s a grassroots effort, because you have to touch people one-on-one to be effective.

As I already mentioned, we’re trying to reach out to wives, but we’re also trying to reach out to the children. I did a radio program at my school in North Carolina during halftime of a football game, and I spoke with the editor of the newspaper there about prostate cancer, and he was very aware of the disease. I asked him how he knew so much about it, and he said that his girlfriend’s father had just been diagnosed with prostate cancer and that they were looking at the treatment options. Older children clearly want to help when there’s a problem. So, part of our Rally Against Prostate Cancer involves educating students about what they can do. For example, they may be very proficient at doing research on the computer; other family members might not be.

Do you think that the educational materials that are out there are adequate? Or do they need to be improved?

FARRINGTON: Oh, I’m sure there’s room for improvement and room for more information. We have a number of materials to get people started, but education is an ongoing process.

A recent study looked at how physicians talk to patients about the possible complications of prostate cancer treatment. The patients came from various educational and socioeconomic backgrounds. The patients often didn’t understand the terms that the physicians used. [See “Physician-patient communication,” below.]

FARRINGTON: I’m not surprised. People talk about informed decision-making, which I think is a good goal, but you can’t have an uneducated public be part of an informed decision-making process. They don’t understand what the doctor said, and they’re scared. So they rely on the doctor to make decisions for them, and that’s the wrong approach, especially for prostate cancer.

What advice would you offer to public policy leaders to improve prostate cancer education, especially among African American men?

FARRINGTON: Well, one of the things that we’re trying to get through Congress right now is a resolution designating prostate cancer as an epidemic in African American communities. In the last session of Congress [in 2009], we had 130 members of the House co-sponsor the resolution. We hope to get it through next time. When you look at the extent of prostate cancer in black Americans and compare it to other communities, it is an epidemic. Once it’s classified as an epidemic, we can better shape educational, research, and treatment strategies, and get appropriate resources.

Prostate cancer has a devastating effect on African American communities. Think about the men who are sick and can’t work, the cost of health care, the families they can’t support. One of our PHEN TV programs is about a man in the Washington area who had to file for bankruptcy because he ran out of health insurance and couldn’t pay all of his bills. People don’t see that. People see the statistics — the death rate is two-and-a-half times higher in African Americans — but they don’t see what that really means or the cascading effects of a diagnosis. We’re trying to tell the public policy leaders that this is an epidemic that affects the entire community.

Obviously we don’t want to buy in to the stereotypes, but it seems as if many people in the African American community don’t trust doctors. [See “Barriers to care,” below.] Why is that? What’s underlying the distrust of the medical system?

CARRINGTON: I think men are reluctant to see a doctor in general. It’s often their wives who push them to go. It may be that they feel it’s an attack on their masculinity. And I think it becomes intensified in the black community because so much of the medical establishment is white and often seen as foreign. Blacks with limited means may not interact with whites on a regular basis, so the white medical community may seem foreign and suspicious to them. They will go to the emergency room, but often, they avoid seeing a doctor for routine care.

FARRINGTON: Men are taught that if they experience a little pain, they should walk it off, live through it, and they’ll be fine. So unless they’re in a lot of pain, why go to the doctor? I think that’s part of the reason men are very reluctant to go for routine check-ups.

The men I work with don’t seem to distrust the medical community. A lot of them have issues with something a physician has said or recommended. But again, this emphasizes the need for knowledge and awareness that, when it comes to prostate cancer, you need to see a doctor and get screened. Once you begin to have symptoms of prostate cancer, it’s often too late for a cure.

CARRINGTON: The thought of a digital rectal exam will really put men off as well. And when you talk about prostate cancer, that’s what they think about.

What was the most difficult part of your prostate cancer experience?

CARRINGTON: The most difficult part came between the time of the diagnosis and finally making a decision as to what kind of treatment I was going to have. I was very fortunate in not suffering. I managed to avoid some of the feared consequences, such as incontinence and erectile dysfunction. Everything went a heck of lot better than I ever imagined it would.

FARRINGTON: Yes, the most difficult part was the initial diagnosis and selecting a treatment. I was not prepared to deal with the diagnosis or finding a treatment. I was able to work through that, but a lot of men can’t. It’s really difficult emotionally to deal with a cancer diagnosis, and having to make a decision on the treatment during that time is even harder. A lot of men just can’t do it. That causes them to make a decision that they may regret later, such as treating their cancer when it really doesn’t need to be treated. They’re afraid to not be treated.

Like Walter, I have not had any complications. But I know of lots of people who have had complications and weren’t adequately prepared for them because they couldn’t deal with the initial diagnosis or really think through their treatment options before making a decision.

When you talk with men around the country, do you find that they are generally satisfied with their care and the decisions they made regarding screening and treatment?

FARRINGTON: Well, it varies. If you ask about screening and whether men were happy that they got screened, almost 90% of the men I speak with would say that they were. But if you ask, “Are you pleased with the outcome of your treatment?” you’ll get a different story. It depends on whether they’ve had complications or a recurrence of their cancer. So some people aren’t pleased. I’ve talked with men dying of prostate cancer, and it’s hard for them to be satisfied with their care when they’re dying.

Any parting comments?

CARRINGTON: I am very concerned about disparities in health care — and not just with respect to prostate cancer. African Americans have a greater risk of many diseases, and their treatment outcomes aren’t as good as whites. And then there are disparities in terms of access to health care. I was lucky. My sister, a breast cancer survivor, co-chaired the Multicultural Cancer Task Force at a local hospital and helped me get the best doctors. But very few people are in that position. I wish we could have a plethora of organizations like PHEN to increase outreach efforts in the African American community.

FARRINGTON: One of the few benefits of the prostate cancer screening trials is that the media coverage increased the visibility of prostate cancer. The question now becomes whether we will use this visibility to increase education, knowledge, and research funding or take a step backward into the days where we had a much higher death rate.

People may wonder about the value of screening for prostate cancer, but if you look at the death rate over the last decade, it has come down. I think most people attribute that to screening, but some people now say that maybe the drop in deaths is due to new treatments. I haven’t seen any definitive studies that say that, so I still say the difference is due to early detection and PSA testing. [See “Screening and prostate cancer mortality,” below.]

I’m concerned about national policies related to prostate health, and I’m worried that we could move backward. We need to make sure that we move forward. We’ve got a lot of work to do to improve care for all men, especially men at high risk — men with a family history of the disease and African American men.

Originally published Oct. 1 2009; last reviewed April 22, 2011.