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.]

Prostate cancer screening: What’s recommended

No major scientific or medical organizations — including the American Cancer Society (ACS), American Urological Association, National Cancer Institute, American Academy of Family Physicians, American College of Preventive Medicine, and American College of Physicians — currently endorse routine screening for prostate cancer, not even among high-risk men. Instead, these organizations recommend that health care professionals discuss the risks and potential benefits of screening so that men can consider their own situation and make an informed decision.

According to the ACS, this discussion and an offer for screening should take place beginning at age 50 for men who are at average risk of prostate cancer, or beginning at age 45 for men at high risk of the disease, including African American men and those with a first-degree relative (father, brother, or son) who has been diagnosed with the disease. The discussion should take place even earlier — at age 40 — for men at very high risk, such as men with several first-degree relatives who have had prostate cancer. The organization also states that a man who leaves the decision up to his doctor should be screened.

While screening can spot prostate cancer early, it can’t tell how dangerous the cancer is. In some cases, prostate cancer grows so slowly that it might never cause a problem if left untreated. But once it’s diagnosed, most patients feel compelled to undergo treatment, which can cause side effects like impotence and incontinence. That’s why the ACS and other groups don’t suggest routine testing.

For more information, log on to the ACS Web site, www.cancer.org.

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.

PSA screening and mortality studies

Andriole GL, Crawford ED, Grubb RL 3rd, et al. Mortality Results from a Randomized Prostate Cancer Screening Trial. New England Journal of Medicine 2009;360:1310–19. PMID: 19297565.

Schröder FH, Hugosson J, Roobol MJ, et al. Screening and Prostate Cancer Mortality in a Randomized European Study. New England Journal of Medicine 2009;360:1320–28. PMID: 19297566.

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.

Physician-patient communication

Kilbridge KL, Fraser G, Krahn M, et al. Lack of Comprehension of Common Prostate Cancer Terms in an Underserved Population. Journal of Clinical Oncology 2009;27:2015–21. PMID: 19307512.

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.

Barriers to care

Talcott JA, Spain P, Clark JA, et al. Hidden Barriers Between Knowledge and Behavior: The North Carolina Prostate Cancer Screening and Treatment Experience. Cancer 2007;109:1599–606. PMID: 17354220.

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.]

Screening and prostate cancer mortality

Two teams of researchers independently developed mathematical models to project how much of the observed decline in prostate cancer deaths could be attributed to PSA screening. Both models projected similar death rates prior to, and in the few years after, 1985. (Use of PSA screening became widespread in the early 1990s.) But by 2000, the models had different projections: one attributed 45% of the decline in prostate cancer mortality to screening, the other 75%. In a report of the findings, the researchers conclude that other factors, such as changing treatment practices, likely played a role in improving prostate cancer outcomes, too.

SOURCE: Etzioni R, Tsodikov A, Mariotto A, et al. Quantifying the Role of PSA Screening in the U.S. Prostate Cancer Mortality Decline. Cancer Causes and Control 2008;19:175–81. PMID: 18027095.

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.

Comments
2
Anonymous

Men beware!

Read the hard facts about prostate cancer testing and treatment what no one will tell you about, even after it’s too late. This is information all men over 40 should have. Also anyone concerned about cancer in general or privacy issues should read this warning. Prostate cancer patients are often elderly, over treated and exploited for profits, AKA elderly abuse.

$ $

The overtreatment of prostate cancer for profit must stop! The treatment and well documented overtreatment of prostate cancer often results in devastating and unnecessary side effects and sometimes death. Profit vs. QOL (quality of life).

Per some studies:
1 man in 6 will be diagnosed with prostate cancer in his life.
About 233,000 new cases per year of prostate cancer.
About 1 Million blind biopsy’s performed per year.
6.9% hospitalization within 30 days from a biopsy complication.
About 1.3 to 3.5 deaths per 1,000 from prostate blind biopsies.
.2% deaths as a result of prostate cancer surgery.
60% had a prescription filled for an infection after a Biopsy.
Medical mistakes are the third cause of deaths in the USA.
Prostate cancer patients are at an increased risk for fatigue, depression, suicide, heart attacks and accidental death.

Prostate cancer patients are often elderly and exploited for profit, the treatments offered almost always have horrible side effects, and newer treatment options are ether unavailable or not offered to patients or available outside the USA. Also men are often over treated for profit. Prostate cancer is often slow growing and of low risk and can just be monitored. Often no treatment is the best treatment.

If a surgeon is financially responsible for a building lease or a large staff or an oncologist is also responsible for a lease on 5 million dollars of radiation treatment equipment, do you think they would be more or less upfront about the benefits and hazards of treatment? Do you think the profit margin would compromise some doctor’s ethics?

The risks percentages for side effects from a blind biopsy and Prostate cancer treatments are usually understated to patients and some side effects are often not disclosed at all.

Men with a high PSA tests result are usually sent to an urologist for a blind biopsy. Men should be told about other options: Percent free PSA test, PCA3 urine test or a MRI test before receiving a blind biopsy. These tests can often eliminate the need for a more risky and invasive blind biopsy. Insertion of 12 to 18 large holes through the rectum into a gland the size of a walnut, a blind Biopsy can result in prostate infections, a risk of permanent or temporary Erectile Dysfunction, urinary problems and sometimes even death from sepsis (About 1.3 to 3.5 deaths per 1,000 from Blind biopsies). A blind biopsy can also increase PSA reading for weeks or months.

Prostate cancer patients are often sent for a bone scan. A bone scan has about a 13% chance of having a false positive and only 3 men in 1,000 have bone cancer who have a bone scan. Bone scans are usually unnecessary in lower risk prostate cancer patients.

Low risk Cancer patients or patients with advanced age are often sent for aggressive treatment by some doctors when monitoring is usually a better option. An extreme example of overtreatment is one SBRT (a 5 day radiation treatment) clinical trial. Prostate cancer patients where intentionally treaded with a huge dose (50 Gy) of radiation resulting in disastrous long term side effect for some of these men. A large percentage of prostate cancer patients in this study had low risk prostate cancer.

Clinical trials may or may not be hazardous to patients. The goal of a clinical trial is to gather information; the intent is not necessarily to help or cure patients. In a clinical trial, if someone is given a treatment that will harm them (as in the above example) or given a placebo in place of treatment or needed treatment is withheld, the patient may be deceived or harmed. Investigate before you participate in any clinical trial.

Prostate cancer patients are asked to fill out a series of EPIC questioners and other questioners. The EPIC questioners ask intimate details about patient’s sex life, urinary and bowl function. By a prostate cancer patient completing a EPIC questioner, he may be able to assist his doctor, nurse or other office workers track his progress or decline. By refusing to fill out these questioners he can help insure his privacy and insure he do not unknowingly become part of a study or clinical trial or other collective survey. He may be told these questioners and records are confidential; this statement is an exaggeration. Most of the time a patient has no idea who has access to the records or why the records are being looked at. Who has access to medical records? Records are vulnerable. Probably everyone that works in a medical office or building has access to the records. This may include/however not limited to non-medical employees, office workers, bookkeepers, janitors, insurance companies, temporary high school or collage interns, etc.. This may include other medical facilities, programmers, hackers, researchers, drug companies, etc. Often records are placed on a health information exchange (HIE), dozens, sometimes even hundreds or thousands of people may have access to the records. Sometimes information can even be placed on a databases at any location in the world. Some major databases (SEER) are linked to Medicare records to determine “the final outcome” for researchers, collage students and studies. Allegedly sometimes in some databases identities are anonymous, however how can patient records be updated and tracked without a name or some other patient identity? Records may be packaged and offered for sale, this does happen. If a doctor or a patient or insurance company is involved in a criminal or civil case, medical records may become public court or law enforcement records. All patients should get a copy and read any confidentiality disclosures statements (HIPAA statements). HIPAA laws will only partially protect patients. Patients can also become the victims of medical Identity theft. Patient privacy is under attack. Under the HIPAA laws you are entailed to a copy of all your medical records, however if you try to obtain a copy of extensive records as in doctors notes or a hospital stay you may be met with resistance. All patients should avoid supplying unnecessary information whenever possible, supply relevant information only.

The most common treatment options for men with prostate cancer are radiation, Brachytherapy, surgery, cryotherapy and hormones (ADT). Sometimes chemotherapy, immunotherapy and castration (orchiectomy) are used. A combination of treatments is often used. All of these treatments have long term or short term side effects. Often men are not told about all of the true risks and side effects or they are downplayed for both a blind biopsy and treatments.

Brachytherapy is radiation seed implant. This treatment procedure implants 50 to 100 radioactive seeds in the prostate, commonly resulting in urinary problems. The patient will literally become radioactive for about a year. The patient can set off radiation alarm and metal detectors at airport. His semen will become radioactive. The patient will become like a walking Chernobyl, having radioactive scrap metal in his crotch. He will also be required to carry a card in his wallet stating he is radioactive. The videos of this procedure seem disturbing and bizarre. However Brachytherapy seems to have less sexual side effects than some of the other treatments available.

Men are sometimes prescribed hormone therapy (ADT therapy), AKA chemical castration as an additional or only treatment. Hormone therapy is often very expensive (profitable for doctors) and has horrible, strange and devastating side effects, feminization, fatigue, etc.. Hormone (ADT) therapy is sometimes over prescribed for profit. This treatment has so many temporary and permanent mind and body altering side effects that doctors will not inform patients about all of them. Men are sometimes actually castrated (orchiectomy) as a cancer treatment to reduce testosterone.

Nerve sparing Robotic-assisted DaVinci surgery is touted as being a better treatment and having fewer side effects, this is usually an exaggeration. The nerves can not always be spared. Robotic surgery can result in a faster initial recovery. However the long term risk of sexual dysfunction, incontinence, fatigue, etc. is about the same as conventional surgery. Patients undergoing surgery are at a small risk of developing post traumatic stress disorder (PTSD) and a 25% chance of long term or permanent fatigue. Also .2% risk of deaths as a result of prostate cancer surgery or medical mistakes.

Patients should not be naive. Medical mistakes are the third cause of deaths in the USA. Medical mistakes cause more deaths then suicide, firearms and motor vehicle accidents combined. Countless other patients have been harmed by medical mistakes If you are having surgery, brachytherapy, a biopsy or a procedure take precautions if possible. Have someone qualified or knowledgeable monitor you and your medications, etc.. Doctors, nurses and technicians can be profit motivated, use obsolete procedures, be lazy, incompetent, make mistakes, be apathetic or rushed. In some cases harm can be done or not prevented with intent. Doctors offices and clinics see hundreds or more patients in a relatively short amount of time. This is often a disadvantage to patients, empathy and quality of care can be compromised. Sometimes a medical assistant or an office staff member may be the person that overseeing much of a patients care. Patients should be aware that often QOL (quality of life) may be secondary or an absent goals in treatment. Overtreatment for profit or to prevent an unlikely death or metastization from low risk cancer may be the primary or only goals of cancer treatment.

A blind biopsy or treatments are often worse then the disease: Resulting in Chronic/permanent fatigue, incontinence, depression and sexual dysfunction. Hormone therapy has an extensive list of side effects that can be devastating for men. Biopsies and treatment are degrading, stressful and often unnecessary.

The risk of long term chronic and permanent fatigue (that can result in depression) is almost always understated if mentioned at all to patients. Depending on your treatment; the risk of long term or permanent fatigue is about 25% to 60%. Radiation with Hormone therapy has a high risk of fatigue. Long term fatigue also increases the risk of clinical depression and suicide.

In my opinion: Castration, hormone therapy (chemical castration), Brachytherapy (radiation seed implant), surgery and blind biopsies are often psychically and emotionally brutal, traumatic and disturbing. These types of treatments (Frankenstein stile medicine) are primitive and almost beyond belief in today’s world of advanced technology. Newer treatments like hyperthermia, Boron Neutron capture therapy, Focal Ablation (only treating the cancer and not the entire prostate) and orphan drugs should be approved and used when appropriate. Biopsies should be limited to selective MRI guided samples only, no blind biopsies should be performed.

Advances in prostate cancer treatment mostly consisting of newer more accurate radiation treatments, robotic surgery and new drugs. These advances sound like greater strides have been made. However most of these approved advances are of limited benefit to prostate cancer patients and still have about the same amount of side effects. Compared to other technologies, computers, communications, electronics, aviation, etc., Cancer treatment approved advances have been dismal. QOL (quality of life) issues have not been adequately addressed. Profit often outweighs QOL.

Some oncologists are using Radiotherapy (EBRT-external beam radiation therapy) for cancer treatment. New technology consists of: IMRT, SBRT, IGRT VMAT, TrueBeam, Cyberknife, etc. This newer, faster, more accurate and easer to setup radiation equipment is of much benefit for doctors, staff and a good selling point to patients. However as far as reducing long term side effects, only very small gains have been made with the newer radiotherapy equipment. A patient should be extremely skeptical if exaggerated claims are made about reduced long term side effects, especially fatigue and ED rates.

Radiotherapy can result in a 5% to 30% temporary or permanent drop in testosterone levels. This drop is determined by the testicular radiation dose (treatment equipment and planning). A significant drop in testosterone can result in increased fatigue, depression and sexual dysfunction.

Radiation can also occasionally result in secondary cancers and damage to “organs at risk” (organs close to the prostate). Radiation has high probability of sexual dysfunction. Sometimes radiation can also cause bowel and urinary problems. A 5 day SBRT radiation treatment is now commonly available with about the same results and side effects as a 9 week radiation treatment.

It seems all of the best treatments for prostate cancer have not been approved and most are only available outside the USA. Treatment options outside the country or under development are HIFU, Laser, Hyperthermia, Boron Neutron capture therapy and orphan drugs, Just to name a few. Focal Laser Ablation is a good option with fewer side effects however it is not widely available in the USA and sometimes not practical.

Any cancer patient (Man or woman) who are being offered chemotherapy should be particularly cautious. Most Chemotherapy is extremely toxic and sometimes deadly. Without genomic testing or proof of the effectiveness of the specific drug being used on the exact cancer type being treated, Chemotherapy is often more toxic to the patient then to the cancer. Chemotherapy is also extremely expensive, profitable for doctors and often misused or overused.

Do you think the AMA, FDA or any other regulatory agency will stop the exploitation of elderly men with a high PSA or prostate cancer or approve new treatments at the risk of financially bankrupting thousands of treatment facilities and jeopardizing thousands more jobs? Do you think any regulatory agency will set guidelines for treatment and monitoring at the risk of upsetting the doctors who are over treating? Most elderly men are not willing to openly discus there sex life, incontinence or other personal problem making them a more vulnerable victim.

Most of the time few good choices exist for treatment. A prostate cancer patient treatment choice often ends up being the least worst choice or the choice with the side effects a patient thinks he can tolerate. Patients are often misled about the expected side effects and results of the treatment being offered. The risk of chronic fatigue is almost never disclosed.

Long term care consists of regular PSA testing for years. Long term care for side effects is often lacking or exploitive or ineffective. Often complaints of side effects are disregarded by nurses, doctors and sometimes referred out to other doctors. The patient is sometimes left to figure out what to do about his side effects with the resources available to him. Long term side effects often consist of fatigue, bowel or urinary problems, sexual dysfunction, depression and other symptoms. Patients with complaints of chronic fatigue are often told to exercise, get plenty of sleep, pace yours self and eat a healthy diet; this advice is of limited help for chronic fatigue. Often treatments for long term side effects are embarrassing, degrading, unavailable, nonexistent, costly, not effective, not offered or bothersome. Prostate cancer treatment often results in fatigue, depression, isolation and sometimes suicide. Billions of dollars are profited from ED. drug and other ED products, catheters, pads and diapers, drugs for depression or pain or insomnia or incontinence, additional treatments and surgeries for side effects. Also treatments for the multiple and bizarre side effects from hormone ADT therapy (chemical castration) is required.

Depression in prostate cancer patients is common, about 27% at 5 years (per some studies) and for advanced prostate cancer patient’s depression is even higher. Prostate cancer patients are at an increased risk of Suicide.

Almost all prostate cancer treatments usually result in erectile dysfunction. Loss of libido occurs at about 45%. Often claims of prompt effective treatment for ED if it occurs after treatment are often misleading. Statistics for ED percentages from treatment are quoted after treatment with Viagra, muse or other ED treatments, therefore the statistics are very misleading. ED rated at 5 years may be as high as 50% to 80% or higher for most treatments. ED rated at 15 years may be as high as 90% or higher for most treatments. For cryotherapy ED rates are about 100%. The cost for ED drugs like Levitra, Cialis, Viagra and Muse are kept very expensive by drug companies, about $9 to $45 per 1 pill. Most insurance companies will not pay for ED drugs or treatment. Less expensive generic drugs are usually unavailable. Viagra should have already become available in a generic form for about $1 to $2 a pill. This is further exploitation by the drug companies of men in general. Men are further exploited by counterfeit mail order ED drug sales. ED drugs are not always effective and may have side effects. ED treatments can also be embarrassing, not offered, not practical, painful, expensive/not covered by insurance.

In conclusion: Prostate cancer patients are often elderly and exploited for profit. A blind biopsy is unsafe and newer test methods should be used. The treatments offered have horrible side effects. Some doctors are treating patients with low risk cancer or advanced age when monitoring is often a better option. Patience with low risk cancer or advanced age should often be offered “watchful waiting” or “active surveillance” instead of treatment. Aftercare for long term side effects is frequently ineffective, expensive, not offered or nonexistent. Prostate cancer patients are seldom told about chronic fatigue and the true risk of side effects are usually understated. Modern medicine often fails and victimizes prostate cancer patients.

If a patient has intermediate or high risk prostate cancer and dose not have advanced age he may need treatment. He should look into other advanced treatments if available. Also he should try and avoid Hormone therapy if possible because of the multiple side effects. If advanced treatments are not available a 5 day SBRT radiation treatment may be considered (In my opinion, it could be the best of the bad choices). SBRT seems to be fast, least invasive and traumatic. ED and fatigue is still a long term risk. Radiation with Hormone therapy has a high risk of long term fatigue.

Protect yourself: Do not let the sterile, friendly and professional environment of a doctor’s office denture you from protecting yourself from overtreatment or any unnecessary life changing tests and treatments. If you are concerned about misuse or privacy issues, refuse to fill out EPIC questioners and limit the information given to relevant information only. If you have a high PSA or prostate cancer, educate yourself. A patient should be extremely skeptical if exaggerated claims are made about minimal long term side effects from conventional treatments or blind biopsies. Bring someone educated or astute with you to your consultations and appointments. Avoid doctors that are mostly profit motivated. Do not submit to a blind biopsy if other options are available. Get a second or third opinion if you are being offered treatment with low risk cancer or have advanced age. Learn about all your treatment options, testing and side effects. Verify everything you are told. Under the HIPAA law you are entitle to a copy of all your medical records and bills. Be very cautious if you are ever refused a copy of your records; demand a copy of your records and a reason for any denial and seek other advice. Get a copy and keep a file of your test results, biopsy report-Gleason score, PSA, MRI report, treatment plan, bills, insurance payouts, etc.. Carefully monitor your PSA. Expect a temporary increase (for weeks or months) in PSA after some procedures. If treatment is necessary talk to your doctor in advance about side effect management, chronic fatigue, ED, Etc.. Contact a good prostate cancer support group like PAACT or a local support group without a conflict of interest.

Disclaimer: I have no confect of interest. I have no affiliation with any support group or other organizations. I am not a doctor. I do not prevent, treat, diagnose, cure or advise on medical matters. The information above is for educational purposes only. If you need treatment or medical advice, consult a competent and trustworthy medical doctor.

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