Enough Dismay! Rewriting the Prostate Cancer Story for Black Men
Just hear me out here. Look: I get it. I come from a high-risk prostate cancer family, with five beloved men, including my husband, my dad, his dad, his grandfather, and my grandfather affected so far. So you know I am not ever going to downplay the risk. But enough! Let’s stop being afraid of prostate cancer, or feeling that it’s just inevitable, or that there’s nothing you can do, or worse, pretending like the risk isn’t there. Dismay doesn’t help; action does!
Why do I worry so much about black men and prostate cancer? Well, I’ve met a lot of men with prostate cancer over the years, and two who hold permanent places in my heart are both black, both U.S. Veterans, the toughest guys you could ever meet (one, Les, was a USMC drill sergeant!), both devout in their faith, both devoted family men, both not screened for prostate cancer when they needed to be, starting at age 40. Both were diagnosed with metastatic prostate cancer, and for both, cancer proved an enemy they couldn’t beat. Their deaths devastated me. Which is why you may think I’m crazy when I say this now: Enough with the Dismay!
Just hear me out. Look: I get it. I come from a high-risk prostate cancer family, with five beloved men, including my husband, my dad, his dad, his grandfather, and my grandfather affected so far. Two of them, my husband and my dad, got screened, were diagnosed early, and their cancer was cured. I worry about our two sons, and you can believe I will be on them like the proverbial duck on a June bug to make sure they get screened! So you know I am not ever going to downplay the risk. But enough! Let’s stop being afraid of prostate cancer, or feeling that it’s just inevitable, or that there’s nothing you can do, or worse, pretending like the risk isn’t there.
Dismay doesn’t help; action does! Yes, if you are of African descent, you are at higher risk of getting prostate cancer. However, says physician-scientist Kosj Yamoah, M.D., Ph.D., radiation oncologist and cancer epidemiologist at Moffitt Cancer Center in Tampa, Florida, who is also black, this news should not make you feel defeated. Instead, use this knowledge as advance warning! Here, then, are some facts and encouraging advice about how you can take action:
Fact: If you’re a black man, you are more likely to get prostate cancer. Your odds are one out of six, as opposed to one out of eight for men of other races. “In other words,” says Yamoah, “you are 74 percent more likely to get the disease than non-black men.”
How can you act on this? “Get your first PSA by age 40.” Note: you might have to ask your doctor for this, because many doctors don’t start prostate cancer screening until patients are in their mid-forties or even early fifties. But research currently under way at Moffitt and elsewhere suggests that for some black men, the early fifties may be too late to catch cancer while it is still confined to the prostate. For whatever reasons – genetic, environmental, or both – in black men, cancer can take less time to develop, and to spread outside the prostate. So, if you are in your forties and have not been screened, Yamoah advises, ask your doctor for a PSA test and physical exam to check for prostate cancer. “This is something you can do. Make it happen.”
Fact: Treatments for localized prostate cancer work equally well in men of all races. But that’s a limited-time offer; it only holds true if cancer is caught and treated early. “If you or a loved one are African American and have prostate cancer, get treatment in a timely manner!” says Yamoah. “Particularly for localized prostate cancer, whether you get surgery or radiation, if you are diagnosed and are treated adequately, know that African American men survive the disease exactly the same as non-black men – as long as these two caveats are met. In equal-access environments, there is no difference in survival.” However – perhaps because they may be younger, and otherwise may be feeling strong and healthy – if men delay treatment, because “I feel fine,” their cancer may become much more difficult to cure. Ladies, if you are reading these words, know that you may have to do what my mom and I did with my dad, and what I did with my husband: make him get regular screening.
Fact: Unfortunately, treatment is variable. Success of prostate cancer treatment is operator-dependent; so is quality of life.
What does this mean for you? “Seek the best care; don’t settle for less,” says Yamoah. “It may require a bit of researching, but it makes a difference.” Making the effort now to do your due diligence and find the best surgeon or radiation oncologist will pay off for years to come. “In many states across the U.S., we have the best of the best in cancer care, but sometimes patients don’t seek the best care from centers with the appropriate expertise.” Important note: “It is also okay to get a second opinion if you are unsure about your treatment plan.” Unfortunately, patient support groups and online chat rooms abound in stories of regret, anger, or sadness from patients who did not receive excellent care. Yamoah tells his patients: “Look at it this way. You would not want to take your car to a bad mechanic; you want to take your car to the best shop. Why not your body? It should be no different for health care. We should be looking for the best. Being your own advocate for getting the best care could change your life.”
That said, “Don’t fear treatment.” For every possible side effect you might have, there are effective treatments. You can get your life back. The main thing is to be cancer-free. Also, there are exciting new treatments being investigated now that don’t involve removing or treating the whole prostate; because of advances in imaging (MRI and PSMA-PET), it is now possible to get a pretty accurate idea of the extent of cancer. On the horizon are treatments that may be able to cure prostate cancer when it is caught very early that have few to no side effects!
You Need Personalized Care!
Not only does prostate cancer tend to start at a younger age, and to be more aggressive, in some black men: it also tends to start in a different part of the prostate! And not only is it often in a different part (the anterior region of the prostate, behind the urethra): it’s a part that’s more difficult to reach, and easier to miss, with a tiny biopsy needle.
What can you do about this? Yamoah offers this advice: “An MRI and perhaps an additional blood or urine test, to discover or rule out aggressive cancer, will help even the playing field for black men – even for black men who are thought to have lower-risk disease, who may want to be on active surveillance.” Is it truly safe to be on active surveillance? Do you truly have low-risk disease – or was there more intermediate- or even high-risk disease hidden in the prostate that was not captured by the biopsy needle? “Active surveillance works well – as long as patients are staged correctly.”
Here’s another difference: Black men seem to respond better to some treatments than other men! Research by Yamoah and colleagues has shown that Provenge (Sipuleucel-T), an immunotherapy drug currently approved for men with metastatic prostate cancer, is more effective in African American men than in other men. Many black men “seem to have an immune microenvironment enriched for immunosuppressive biomarkers,” says Yamoah. “Also, in these men, prostate cancer tumors may be a bit more sensitive to radiation. We are seeing something in clinical trials: that medications like Provenge, and in some instances radiation and ADT, seem to benefit black men more than white men, as measured by longer disease-free intervals and longer survival.” This suggests, he adds, that “maybe there is some component of a distinct biological subtype that favors certain treatments in black men; it’s a paradigm shift!”
Encouraging results from several studies now under way will help oncologists “tailor treatments appropriately with personalized medicine, based on individual patients’ biology. This may be leading to a change in the way we see metastatic disease, that will convert it into a chronic disease. This is all emerging; it’s all new stuff.”
What You Can Learn from Eastern European Jewish Women
“It might seem racist to say that cancer is different in black men than it is in other men,” says Yamoah. “But that couldn’t be further from the truth: it’s not about race. It’s about subtypes of cancer. It is incorrect to say that you have a different type of cancer because of your skin color; the message is that, in order to treat all men equitably, we have to study all populations.”
What are subtypes? They are specific varieties of a disease – based on differences in mutated genes, or differences in the immune system, or maybe even differences in the microbiome. Each subtype may respond slightly differently to treatments and also to biomarker tests. “We know that the cookie-cutter approach, treating all patients the same, does not work with prostate cancer,” says Yamoah. “So, we need to fine-tune our diagnosis and treatment.” Unfortunately, much of what scientists have learned about prostate cancer has come from studying predominantly white patient populations. “We have not had enough African American participation in studies and in scientific exploration.”
How can you help change this? “Get involved in research. Become active participants in discoveries for treating prostate cancer.” Particularly, different biomarkers may work better in black men. “Whether it’s helping to determine the polygenic risk score – are you at risk, or do you have a family member at risk – or whether it’s helping to find out through biomarker discovery what subtype of prostate cancer you have, and how best to treat that, we could really use your help.” Many academic medical centers have “biobanks,” collections of patients’ blood, biopsy and tissue samples that can be used for research. If your doctor asks you to participate, consider saying yes.
Consider the case of Ashkenazi Jewish women – descendants of a very small group of about 350 people who lived in Eastern Europe about 700 years ago. Around one in 40 people with Ashkenazi Jewish ancestry has a mutation in the BRCA gene, which is linked to breast and ovarian cancer, and also other cancers, including prostate cancer. “Through studying a sub-population, we discovered that gene,” says Yamoah. But the implications of this gene are widespread: “Recently, BRCA mutations have been linked to triple-negative breast cancer, which is more predominant among African women. If we hadn’t studied it in the Ashkenazi population, we never would have identified it. Now it has become a biomarker,” and scientists have identified a class of drugs – PARP inhibitors – that work well in cancers with this genetic mutation, including prostate cancer. “It is no different from studying black men. What we learn from identifying subtypes is going to benefit the globe.” The message is “not treating you different; it’s treating you right.”
Each of us has a certain predisposition to disease, Yamoah adds. “For example, some people smoke for 30 years and never get lung cancer. Others smoke for 10 years and get it. We all have a different threshold, based on our genetic predisposition.” Prostate cancer develops because a gene is mutated. “regardless of how it occurred,” whether through decades of eating a bad diet (environmental factors), or through inheriting a bad gene (direct genetic predisposition).
The idea of “one size fits all” medicine sounds nice and egalitarian, but in reality, one size does not fit all. Take, for example, tattoos used in radiation oncology to help pinpoint the areas of treatment. “We had some patients come through, and the technicians called me into the clinic and said, ‘We can’t find the spot; we can’t tell where the tattoo is.’ I said, ‘That’s because the ink in these localization tattoos was developed for the lighter skin and not for the darker skin!” Yamoah found a company that has developed fluorescent tattoos (which show up on any skin color), to be available for his patients with dark skin. “We have made a lot of our discoveries in prostate cancer only looking at one patient population,” but that is changing. “We are now in an era of moving towards more personalized care, regardless of race.”
Another way you can help is to become an advocate. “If you are a black man and you don’t have prostate cancer, you have a voice. You have a sphere of influence; use your influence to encourage others to take heed,” to get tested starting at age 40, and to get prompt treatment from the best doctors you can find. “If you’ve had prostate cancer and you’re a survivor, please be an advocate. We need your voice. Whether you have it or whether you don’t, please help change prostate cancer for this population!”
How Diet, Exercise, and Lifestyle Can Help Lower Your Risk of Fatal Prostate Cancer
If you are overweight, if you smoke, are sedentary, or if you eat a high-fat, high-carb, low-vegetable diet, you are doing prostate cancer a favor: you’re making sure it has a very hospitable environment.
“Cancer is also a chronic disease,” explains Yamoah. “Men with prostate cancer who also have high blood pressure, hypertension, diabetes, and coronary disease – many American men of all races who are affected by one or more of these conditions – do worse with their prostate cancer. If your body mass index (BMI) is high, if you have cardiovascular disease or diabetes, these are conditions that can be made worse by androgen deprivation therapy (ADT). If we have a man who might benefit from ADT, but who has chronic conditions that are detrimental to his overall well-being, we may have to give suboptimal care to decrease the risk of severe side effects because of these co-morbid conditions.”
What can you do about it? Exercise has so many beneficial effects on men with prostate cancer, that it might as well be considered a medicine. “The most effective avenue for combating the side effects of ADT is exercise,” says Yamoah. Similarly, “if you are being treated for localized cancer, if you follow a few simple guidelines for wellness, you are going to do better, recover sooner, and have fewer side effects.”
Exercise doesn’t necessarily mean vigorous activity. Just walking is a great start! You don’t have to pump serious iron, either; even light weights can help strengthen your muscles and protect your bone density.
If you smoke, there’s never been a better time or reason to quit. Men who quit smoking immediately begin to lower their risk of dying of prostate cancer. For more, see this discussion.
Look for foods that fight inflammation and that help prevent insulin resistance – both of which can make cancer grow faster. Caloric restriction – eating fewer calories a day – is also proving to help slow prostate cancer.
“We wish we had medicine to prescribe that had as many beneficial effects as exercise, weight loss, not smoking, and eating an anti-inflammatory diet,” says medical oncologist and molecular biologist Jonathan Simons, M.D., CEO of the Prostate Cancer Foundation. “What’s good for the heart is good for fighting prostate cancer. What’s good for the blood pressure is good for fighting prostate cancer. It’s all connected.”
Finally, one easy-to-fix problem that is common in black men is not getting enough Vitamin D. “Most black men are Vitamin D-deficient,” says Yamoah, “especially in the U.S.” Just spending time outside in the sunshine may not be enough, he adds. But good news: an inexpensive, over-the-counter supplement can restore your body’s Vitamin D levels. Note: 2000 IU is the recommended safe dose of Vitamin D. It’s not a case of, “if some is good, mega doses are better,” because you can get too much. Just stick with 2000 IU per day. What does vitamin D do? “It’s like flame retardant on cancer,” says Simons. “It helps cool the inflammatory environment that cancer loves so well.”
In addition to the book, I have written much more about prostate cancer on the Prostate Cancer Foundation’s website, pcf.org. The stories I’ve written are under the categories, “Understanding Prostate Cancer,” and “For Patients.” As Patrick Walsh and I have said for years in our books, Knowledge is power: Saving your life may start with you going to the doctor, and knowing the right questions to ask. I hope all men will put prostate cancer on their radar. Get a baseline PSA blood test in your early 40s, and if you are of African descent, or if cancer and/or prostate cancer runs in your family, you need to be screened regularly for the disease. Many doctors don’t do this, so it’s up to you to ask for it.
©Janet Farrar Worthington
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