Giving back through proactive prostate cancer education and shared experiences.
Derrick Butts was 53 years old when he was diagnosed with prostate cancer. Following his successful treatment, he teamed up with his father and fellow prostate cancer survivor, Thomas, to write about their experiences battling the disease. Prostate Cancer: A Family Affair, published in 2019, told the tale of three generations of prostate cancer (Derrick’s grandfather, Thomas Butts, Sr. passed away from the disease in 1995) and two generations of survivors.
Derrick and his father were intent on sharing how they increased their chances for longevity post-surgery and to have a quality-of-life after prostate cancer.
Derrick has continued his advocacy as co-founder of the Prostate Cancer Awareness Alliance-DMV, a Washington, D.C.-area nonprofit designed to reach local men with proactive prostate cancer education. He spoke to Black Health Matters about his prostate cancer journey and serving as a resource for other Black men dealing with the disease.
Black Health Matters: How were you first diagnosed with prostate cancer?
Derrick Butts: I have a family history; my father, grandfather, and uncle all had prostate cancer. Because of that, I had been tracking my prostate health since I was 38. In 2015, I noticed my PSArose from 3.32 to 4.32. But I had no side effects—I was asymptomatic. Because I had been getting my PSA checked annually, the rise caused me to get a biopsy, but the first doctor didn’t give me a clear indication of anything. A second doctor didn’t give a clear answer either but sent me to a specialist at the National Institutes of Health (NIH). That was the first indication that I had prostate cancer. Getting diagnosed took seven months.
Black Health Matters: Why is it so hard for Black men to get diagnosed?
Derrick Butts: I run into men who aren’t frequently going to the doctor because they don’t have insurance or don’t feel the need to proactively check their PSA because they’re not experiencing any pain or symptoms. Those who do see a doctor are often told they don’t need a PSA because they’re not old enough—and these doctors say that without even knowing the person’s family history....
To read the entire one-on-one interview with Black Health Matters, please click the "Find Out More" Link nrlow
‘Know Your Numbers’: Derrick Butts, A Third Generation Prostate Cancer Survivor, Fights Back Against the Disease, And He Hopes You Will Too
By Joe Kerwin
For Derrick A. Butts, prostate cancer wasn’t a matter of “if”—it was a matter of “when.”
Butts is the president and co-founder of Prostate Cancer Awareness Alliance – DMV. This non-profit works to promote prostate cancer awareness and connect people in D.C., Maryland, and Virginia (DMV) to the network of screening and treatment resources available to them.
Butts comes from three generations of prostate cancer. His grandfather, uncle, and father all had it. “Just having them, who have gone before me, talking about it and the treatments they received—it prepared me to start looking at my prostate health and checking my numbers early,” Butts says.
At first, though, prostate cancer wasn’t such an open topic of discussion. Butts didn’t learn about his grandfather’s condition until after he passed away from colon cancer. His father also initially kept his battle private. “I didn’t find about my father’s cancer or his treatment until almost 30 days after the fact.” But when Butts’ father did open up to him, he had one important message he wanted to drive home: “Get your numbers checked. Know your numbers.”
A change in urinary habits could be an indicator of prostate cancer, but it could also be due to a handful of other issues.
Butts was 38-years-old when he started getting his prostate checked. In 2015, he realized that he had a problem. His PSA numbers began increasing rapidly.
“When I first was realizing that something was going on, my PSA levels had jumped one point,” he said. “By the time I got to the second opinion, they had jumped from 4.32 to 5.68. By the time I had the cancer removed, it was at 7.62. That was between August 2015 and April 2016.”
Butts had an aggressive case, and his prostate cancer had reached stage 3B by the time it was treated, meaning that the cancer was still contained within the gland, but had moved into the seminal vesicle.
When Butts got the call from his doctor that he had cancer, he was ready. He had been preparing to confront this issue for years.
They asked him to come in for a consultation, but he declined.
“I didn’t need to discuss my options,” he said. “I knew exactly what I wanted to do. I wanted to have it removed.”
Butts lives an active lifestyle. He’s a cyclist, biking 50 to 75 miles a week, he travels, and he teaches martial arts. He knew he didn’t want to be limited by having to continue to monitor his prostate.
“I didn’t want something like cancer to slow me down. The best thing for me and my family was just to remove it and not have to worry about it beyond annual checkups,” he said.
The technology for prostate surgery has improved dramatically since his father’s time. Now, robotics allows doctors to operate with precision, preserving vessels and nerves in the prostate area. Radiation treatment has also become significantly more accurate, with less risk of affecting surrounding organs. When Butts went in for surgery, they removed the prostate, the seminal vesicle, and some lymph nodes to make sure they had gotten it all.
“My process was very clean,” he said. “Everything was functioning about a week after my procedure. I had no lasting side effects.”
Deciding between radiation and surgery to treat prostate cancer is a very personal decision, no matter what your doctor is recommending.
It was at this time that Butts started to think about how he could use his experience to help educate others. When Butts was in the hospital, his father told him he had started writing a book about his experience as a prostate cancer survivor. Butts committed to chronicling his experiences so he could write the second half of the book, which was ultimately published as Prostate Cancer: A Family Affair.
Butts started the Prostate Cancer Awareness Alliance (PCAA–DMV) with the mission of spreading awareness and resources to encourage men to be proactive about their prostate health. Butts had no symptoms from his own cancer and his case was aggressive, so if he hadn’t been monitoring his PSA numbers proactively, he would have had no way of knowing that his health was in danger. He wants to let men know, “You really need to go get checked.
You really need to know your family history. You really need to know your numbers. And that’s not just your PSA numbers. It’s all your numbers—cholesterol, diabetes, heart rate. All those things are important. And you need to advocate for yourself.”
The PCAA-DMV is committed to addressing healthcare inequities through community outreach, and by making people aware of the treatment services available in their area.
“If you get prostate cancer, knowing where to go is half the battle,” said Butts. “We’re trying to collectively gather all the information for our particular geographic region, and say, ‘These are the possible screening sites for prostate cancer, these are the possible treatment services, and these are places where you can potentially get involved in a clinical trial or study.’”
By partnering with other prostate cancer treatment centers in the DMV area, the PCAA-DMV aims to let men know that if you get prostate cancer and you can catch it early, you are going to have more options. There is life after prostate cancer.
When it comes to prostate cancer, African-American men tend to have higher incidences and more aggressive cancers than white men.
Prostate cancer begins in the walnut-shaped gland between the rectum and the bladder, and it is the most common cancer in men. Age and race are two of the main risk factors for prostate cancer, with the disease occurring most frequently in older men and in non-Hispanic Black men. Different patients can experience prostate cancer very differently–in some cases, the condition is slow growing and may not even require treatment. In others, prostate cancer can grow quickly and aggressively.
In a previous interview with SurvivorNet, Dr. Edwin Posadas of the Cedars-Sinai Medical Center said, “Prostate cancer is a very odd disease in that it doesn’t have a particular symptom.” Changes in urinary function and behavior are some of the most common signs of the disease, although they can also point to other conditions. It is important not to wait for prostate cancer symptoms before starting to screen for the disease.
Screening for prostate cancer generally involves a PSA (prostate-specific antigen) test and a digital rectal exam. A prostate specific antigen (PSA) test is a blood test that measures for a substance created by the prostate that is typically higher in men with prostate cancer. There are, however, other reasons that someone might have an elevated PSA level. Age, race, individual variation, and other prostate conditions can all affect PSA levels.
A second test that is sometimes used for prostate cancer screening is a digital rectal exam (DRE), where a doctor feels for a cancerous mass in the prostate manually. This exam may be uncomfortable, but it is brief—it shouldn’t last for more than a minute. Based on the results of your PSA and DRE, your doctor may recommend additional testing including a biopsy or imaging such as a prostate MRI.
To see this story and others like it on survivor net.com, please visit the link below -
Joe Kerwin is a writer and researcher at SurvivorNet, based in New York City. Read More
PCAA-DMV did a podcast on his prostate cancer survivor's journey, men’s health, and outreach to the underserved communities with Dr. Moyez Jiwa who is an associate dean and professor of Health Innovation at the Melbourne Clinical School, University of Notre Dame (Australia).
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Prostate Cancer Awareness Alliance of DC, MD, and VA (PCAA-DMV) was formed with the initiative of creating greater awareness of proactive prostate cancer health through alliances and partnerships for men and their families.
Helping men achieve better prostate health
Advancing proactive prostate health awareness, education, and advocacy through grassroots efforts and collaboration.
• Grassroots - to meet men where they are in their prostate journey
• Relevance – to provide education and awareness at the right time
• Integrity – to provide honest and truthful evidence-based information to impact your care and well-being
• Proactivity – to create a sense of urgency to act and understand a prostate cancer life
Get a G.R.I.P. on Prostate Cancer!
Four Generations - Three generations of prostate cancer - two generations of cancer survivors
During the National Black Family Cancer Awareness Week - June 17-23, PCAA-DMV had an event on June 19, 2021, discussing the journey of prostate cancer from a survivor’s point of view. Hear from three prostate cancer survivors - from three weeks to ten years - and how they prepared for their journey of living post treatment.
In April of 2016, I was diagnosed with prostate cancer and successfully treated. My latest checkup (April 16, 2021) confirmed that my cancer remains undetectable, and I remain cancer free. I am most grateful, and while I focus on maintaining a healthy lifestyle, I am passionate about advocating for men’s health and prostate cancer awareness.
Prostate cancer is the most common cancer among men, except for skin
cancer. In 2021, an estimated 248,530 men in the United States will be
diagnosed with prostate cancer.(1)
I wasn’t surprised that I was among some of the most common cancer cases in the country. Knowing that I have a strong family history of prostate cancer, it was just a matter of time before I would be diagnosed. I’d been planning for 15 years for the day that I would be diagnosed. I began getting screened at age 38 after speaking with my physician, Brother Dr. Charles Franklin. He was very proactive and began my screenings so we could get a baseline of my numbers to track changes in my prostate health.
Yes, I was fearful leading up to my diagnosis. Preparing for the unknown, I could not see the cancer and hopefully wouldn’t feel it. I thought that if I ever began to experience symptoms, the cancer would likely be in an advanced stage. On March 10, 2016, the day of my diagnosis, I received the call from the nurse telling me I had prostate cancer. At first, I was scared, even after the years of preparation. But then I felt calm, and a sense of relief, knowing that because I had prepared for this day, I was ready to take action. When the nurse asked me to come in for a consultation to discuss next steps, I reacted with a simple, “no, thank you.” She was taken aback by my response. I then said, “I’d like to schedule the surgery to remove my prostate.”
As I reflect over the last five years, I’ve had a range of emotions. I was relieved and grateful after my successful treatment (I chose to have a radical prostatectomy, where they remove the entire prostate and any adjacent glands that may be cancerous.)
During my first year, post treatment, I concentrated on establishing my new normal of living. I was optimistic that prostate cancer wouldn’t return but what would my day-to-day life be?
· Would the minor leaking I was experiencing go away, or would I always need a pad?
· How will my marital intimacy be impacted?
· What would be the limitation on thing I could or could not do?
· How was it going to be traveling on long trips?
· How was it going to be on my first airplane flight?
These questions and emotions filled my mind, but I knew I had to be patient as it would take time to heal. Although I was in good health, I began to ask myself, how could I live better and increase my health regimen to maintain good health – eating well and exercising. After the first year, I no longer needed a pad, and I had control of all my muscles. I started Kegel exercises before surgery and have continued up until now, along with my morning core workout. I’m sure I’ll continue them for the rest of my life.
During my second year, regular checkups allowed me to stay optimistic that cancer was in my rearview mirror. I continued focusing on increasing my quality of life. I was comfortable with my work-life balance and began talking about my journey to others as I’d been keeping a journal of my experiences since my surgery.
In my third year, I turned to more advocacy and decided to contribute as a co-author for the book my father began writing about his prostate cancer experiences years before I was diagnosed. “Prostate Cancer – a Family Affair” was written from a non-medical point-of-view sharing our experiences as a black family surviving two generations of prostate cancer. This was also the year that my immediate family decided to become vegetarians, eliminating the poultry and fish, and many processed foods. Additionally, my annual screenings for prostate cancer continued to indicate undetectable levels.
In my fourth year, I was eager to start promoting our book (it’s a quick read) that provides information to help men ask more questions of their physician and provide insight on possible experiences based on treatment options. As we began ramping up to connect with churches, organizations, and social groups, COVID-19 stopped us in our tracks – no more in-person interactions. With the desire to still help men become more proactive with their prostate health, I connected with three other men who had the same interests, and we formed the Prostate Cancer Awareness Alliance-DMV (PCAA-DMV). The goal of the non-profit organization is to reach men with targeted messaging, primarily in the DMV region, with hopes they can stay ahead of any prostate cancer diagnosis. We focus on education, information, and knowing where they can go to get prostate cancer treatments and cancer support services within the mid-Atlantic region.
Like many people, COVID allowed me to laser focus on life’s most important things, so I sought to improve my quality of life even more. This included my health & health regimens, my wife and family, and the organizations I belonged to with a strong focus to help others.
The five-year survival rate indicates the percentage of people who live at
least five years after cancer is found. The five-year survival rate for people
with prostate cancer is 98%. The ten-year survival rate is also 98%.(1)
As a second-generation survivor of three generations of prostate cancer, the five-year mark is major milestone. It means that my long-term survivability is much more likely. The five-year mark for me gave me a reason to celebrate; it was like a new lease on life with April 19th being my second birthday.
Today, I am overcome with joy knowing when I leave this earth, it will not be because of prostate cancer. My energy level seemed to jump when I met the milestone, and I decided to celebrate. I consider cycling to be my ‘two-wheel therapy,’ so that weekend, my goal was to ride ten miles for every year I’ve been cancer free. During this 53-mile ride, it was a great day to reflect and rejoice.
My Message to You
Life after any cancer treatment is about increasing your chance to survive and thrive. If you find yourself in this ‘club that no one wants membership in,’ I encourage you to change your lifestyle, concentrate on what’s important in your life, and then make a strong effort to pay it forward.
Work to help other survivors see and live their lives to the fullest potential – spiritually, mentally, and physically. If you don’t know your PSA numbers or the status of your prostate health, schedule an appointment at your first opportunity – don’t wait. Take someone you love with you to the appointment. Cancer doesn’t recognize machismo, and it doesn’t discriminate.
To all of you who’ve supported me on this journey, thank you. Your outreach, prayers, and encouragement mean more than I can express.
When you can, check out my organization’s website. Diane, my wife, captured my story on video in the Survivor's Storiessection. I’m grateful for her and my sons – Jamel and Jared – for continual love and support. I love and am grateful for my Dad's spirit and insight on life and living - he is still here. 😇🙌🏽 I’m also appreciative for the DMV Spartans cycling team for their support. And to you, my brothers of Alpha Phi Alpha Fraternity, Incorporated, your spirit in continuing to hold up manly deeds….and love for all mankind – in the community reminds me of why I decided to cross the burning sands.
Get yourself checked, and please remember, there is life after prostate cancer! 💙
Derrick A. Butts - April 2021
My Dad - Thomas A. Butts and me sharing a copy of our book on our prostate cancer journey's.
Washington, DC - On Wednesday, January 27th, the Prostate Cancer Awareness Alliance – District of Columbia, Maryland, and Virginia (PCAA-DMV) hosted a panel discussion entitled Sources of Support During the Prostate Cancer Journey. The event was co-sponsored with Hope Connections for Cancer Support and the DC National Pan-Hellenic Council (DC NPHC). The discussion focused on how any difficult journey can be made easier with support from family and friends. For men dealing with prostate cancer, from diagnosis through treatment and recovery, support when and how it’s needed can make a huge difference overall.
“When Richard was diagnosed with prostate cancer, we took it as we did everything else that came our way, we would fight it together and we would win.” – Pat Jackson, wife of Richard Jackson, prostate cancer survivor
The discussion focused on the experiences of four strong women whose partners survived prostate cancer. In addition to being a survivor’s spouse, Pat Jackson is Outreach & Development Manager with Hope Connections, an organization providing cancer support services. Stephanie Harris, Diane Butts, and Dr. Linda Holifield-Kennedy also participated. The event was moderated by Valerie E. Robinson, President of the Washington, DC chapter of the National Pan Hellenic Council.
“We managed his recovery with healing and medical appointments being the number one priority. Mark watched his PSA for 14 years.” Stephanie Harris, wife of Mark Tolliver, prostate cancer survivor.
This discussion was the third in the ongoing series sponsored by PCAA-DMV. “We are shining a spotlight on the importance of proactive prostate health. Spouses and family members play a large role in the support and encouragement of the men in their lives. Our panel discussions allow free-flow exchanges and everyone comes away with more information they can use.” Derrick Butts, President, PCAA-DMV
Click on the PCAA-DMV website to watch survivors share their journeys.
PCAA-DMV events provide educational information about local support programs and services for prostate health and cancer journeys. Panel discussions are typically held every other month.