Friday, September 16, 2011

Shani K. Collins: When It Comes to Black Men and Prostate Cancer, It Takes a Whole Village

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By Shani K. Collins, Your Black World 

My interest in advancing prostate cancer awareness among African-American men is personal: on December 10, 2009, at the age of 61, my father, Charles, was diagnosed with the disease. My father was blessed: his cancer was detected at an early stage, and he had insurance coverage. Unfortunately many African-American men are determined to have prostate cancer when it is at an advanced, less-curable stage. Even worse, many African-American men are uninsured.

I was with my father in Mississippi Delta at the time of his diagnosis; he came out of the doctor’s office holding a book: Understanding Prostate Cancer. Recognizing that he had cancer, my heart sank, but my father did not seem to be very upset. As a doctoral student researching breast cancer among African-American women, one million questions raced through my mind: What stage is the cancer? What treatment do we need? How will cancer impact his other health issues? Who is the best oncologist in the state of Mississippi?

With the sun setting, we drove home that fall afternoon, passing rows of dried out cotton, corn and soybean—staples of the Mississippi Delta. My mind was racing and I soon realized that I was more upset about the cancer news than my dad appeared to be. I asked my father how he felt. He simply said: “I’m going to get treatment and let God handle the situation.” What else could I say to that? It was the truth. Cancer was familiar to me only through textbooks, research journals, and the breast cancer support group to which I belong. Yet, this time, the story of cancer that was unfolding belonged to me just as much as it did to my father—this time, it was personal.

This story is one that began long before my father’s prostate cancer diagnosis. It began with the simple desire to be treated like a human being and to have better access to quality healthcare. My father’s story is one that may resonate with other African-American families. It is my hope that that those who read this article will find the inner strength to place themselves first by exercising and eating right, being informed, but also by having regular doctor’s visits. More important, it is my hope that you will not settle for anything less that humane, just and fair treatment when you visit your doctor.

My Father’s Journey

My dad is a hard-working, nice, simple, God-fearing man who loves being outdoors and spending time with his family. One of 14, he grew up on a farm in the Mississippi Delta, served in the United States Air Force, graduated from a community college, and has had a long career as a heavy machinery operator with the Corps of Engineers. He and my mother Cassie, a retired educator, have been married for 33 years, and have four children—two daughters, two sons. My dad attends church, enjoys the simple life and doesn’t know many strangers.

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I won’t glamorize my father’s health. Unfortunately, he is a smoker, who enjoys the typical southern diet which can be filled with fried foods, sweets, and other unhealthy items. He has had some other health issues throughout the years; yet, he remains very active. Several years ago, he was very resistant to going to the doctor. Instead, when sick, he preferred to “tough it out”. Over the years, his mentality has changed in this regard. Now, he goes to the doctor without putting up resistance. But this change in mindset about visiting the doctor did not occur overnight; it took a lot of conversations with family, lectures from me, and a few health complications for him to recognize the importance of self-care.

Prior to his prostate cancer diagnosis, my father had been struggling with a common, unrelated health issue and was not feeling his best. I took him to his regular doctor, but quickly grew frustrated with the experience. We did not see the doctor, but we were told to wait, like always. For years, my father and countless others in the Mississippi Delta have endured comprehensive health clinics with unusually long-waiting lines. In some clinics, the quality of service is poor because of the overcrowded waiting rooms, discourteous staff, and the limited opportunities a patient has to see a doctor in person. When you are sick, the last thing anyone wants to do is wait for eight hours to see a doctor, and deal with an unprofessional health care staff. On this day, it appeared that my dad and I were on that same path to “waiting” and “dealing” until I said: “Dad, let’s go! I’m taking you to another doctor.”

I drove him an hour away to Mallory Community Health Clinic where he saw a Howard University trained African-American medical doctor named Reginald Rigsby who was nice, friendly, and genuinely concerned about knowing my dad as a person. That day, he received a thorough physical examination, which included a digital rectal examination (DRE). He was told that his prostate was enlarged and that it would be monitored. Otherwise, Dr. Rigsby said my father was generally healthy. He was upfront about his desire for my father to stop smoking. After this doctor’s visit, I immediately thought: “If we had stayed with the other doctor, we would have never known about the prostate issues as his previous doctor was not thorough at all.” We were grateful for the information about the enlarged prostate—it made us aware that there was a concern; we were also grateful for the overall quality of service provided by the clinic’s staff. Although my father liked Dr. Rigsby as a person and a physician, he wanted to continue to “doctor shop”. Then, a co-worker recommended that he visit Dr. Katrina Poe of Kilmichael Clinic, the “2005 Country Doctor of the Year.”

Dr. Poe was the right fit for my father. She was nice, friendly, very firm, and treated my dad like he was her own father. After his initial visit, she recommended additional medical testing at Oxford Urology because she detected blood in his urine. This blood was not visible to our eyes. She also gave him medicine to help him kick his smoking habit. After testing, my father was referred to a young, kind, culturally-competent African-American urologist, Derek Miles of Bolivar Urology. Dr. Miles gave my father a Protein Specific Antigen (PSA) which measured the amount of protein in his blood; the higher the PSA level, the more likely one is to have prostate cancer or some other prostate health issue. My father’s PSA was 4.2, which is considered high. On the first visit, Dr. Miles diagnosed my father with prostate cancer.

The Cancer Discussion and Treatment

My mother and I went with my father to the second visit which was two weeks later. By this time, I was able to research prostate cancer online; I found various websites that offered a wealth of information. I shared all information with my parents and asked them if they had any specific questions to ask the doctor? At that visit, we went in knowledgeable and prepared; we asked Dr. Miles the following questions: What procedure do you recommend and what are the side effects? How many procedures have you preformed? How long will the procedure take? What is the cure rate for this form of cancer? What about the sexual side effects associated with treatment? What about his current health conditions? What does my father need to do to stay alive? What nerve sparing techniques are available? Dr. Miles answered the questions in a professional, personable, confident and welcoming way. He made my parents and I feel comfortable talking about prostate cancer with him. He had a chart, showed us exactly where the prostate gland was, and where the cancer was located.

We were told that my father had a low-grade form of cancer which was not aggressive; he also informed us of several treatment options including chemotherapy and radiation. Dr. Miles explained why he recommended a one-time treatment of radiation that would include implanting a high-dose of radioactive seeds into the cancer. The process to receive treatment would involve having an ultrasound of the abdomen to accurately locate the cancer to ensure that it had not spread to other areas of my father’s body. Dr. Miles made us apart of the treatment process by providing us with options and information. We left the office and he gave us a few days to decide on the best treatment option for our family.

Although we were very pleased with Dr. Miles, I wanted to have a second opinion, too. My father continued to work his regular job and was not able to go with me to get the second opinion. Within a day or so, I visited another local cancer center to discuss the treatment options for prostate cancer of my father’s stage. I was able to speak with a health professional about those options, but I was quickly turned off by the number of cancer patients I saw waiting in a centralized area of the center. Some patients hand drips in their arms—they had no privacy while they received chemotherapy. Seeing this, I was taken back to our many experiences with the previous comprehensive health clinic; I knew that we were done with “waiting and “dealing”. I shared the additional information with my parents and we knew that Dr. Miles and Bolivar Urology were our choice. After prayer and conducting independent research on radiation and its side effects, we felt confident with moving forward with Dr. Miles’ recommendation for the radioactive seed implants.

In preparation for the seed implantation, my father had a chest x-ray, a CAT scan, and an EKG. He was told to stop smoking. Fortunately, the staging revealed that my father’s cancer had not spread. The second step to receiving treatment involved ordering the seed implants and scheduling the procedure. From diagnosis to actually undergoing treatment, the time frame was two months. In February 2010, my father received radiation in the form of seed implants at the site of the prostate cancer. He did not stay in the hospital an entire day. The procedure took a few hours from start to finish.

Dr. Miles told him he could resume normal activities within a few days, and that he had less than 1% risk of having his prostate removed with the radiation—the radiation was very likely to destroy the cancer cells. He finally said my father would need to return to his office every 6 months and in between if he experienced any unusual symptoms. Otherwise, he was to follow up with is regular doctor, Katrina Poe. Dr. Miles indicated that he would monitor the progress of the cancer, which would be determined by lower PSA levels over a 5-year period.

The Side Effects and Moving Beyond Cancer

After having radiation, my father was off work for a few weeks. He could not stay in the presence of small children, which was hard for him as he was a new grandfather to a baby girl, Sidney Nicole, who my sister, Kanika and her husband Reggie had earlier that year. The radiation did have side effects; it caused him to lose his appetite. On many days, he was very tired, cold, and didn’t want to eat. He mainly wanted to sleep and rest. He lost 15 pounds over a few months; however, my mother, my sister and I made sure he ate a well-balanced meal each day, and made sure he “took it easy” as recommended by Dr. Miles. We prayed as a family, and were not secretive about the cancer. We talked about it openly in church, and my father encouraged his siblings and male in-laws to get checked out. The weeks turned into months and with regular visits to the doctor and changes in diet and habit, his health began improving.

I told my parents that we had to do something to educate other Black men about prostate cancer since it is higher in African-American men, especially those with a family history of the disease. In August 2010, at a Men’s Day choir rehearsal, we had a short prostate cancer awareness session with 30 men from our church community. My dad spoke very briefly before the men, and I also shared important prostate cancer statistics. The men were given culture-specific literature that I ordered from the US Too International Prostate Cancer Education and Support Network, and my parents and I handed out candy bags.

Reflecting on my father’s health experiences, many things have come full-circle, and I now have a clearer perspective about health, in general. The resistance my father put up in the past was likely due to his dislike of the overall experience of visiting the doctor: the long lines, the unfriendly attitudes of staff, and the doctor’s lack of concern for his welfare. The enlarged prostate and the blood in his urine were clear indicators of cancer, but my father never would have known had he not switched doctors. To add, my father does have a family history of prostate cancer: several of his older brothers also had the disease. Last month, his younger brother was diagnosed with prostate cancer. From the oral accounts told to me by my father, it is possible that my grandfather may have had prostate health issues.

Although my grandfather’s health information is uncertain due to a lack of record-keeping, knowing that he had prostate issues is an important piece to my father’s family health history, and to my own. During my grandfather’s generation Jim Crow was prevalent--times were hard for Blacks living in Mississippi Delta, and health care was not a top-priority. Also, during this era, there was not much discussion about the personal nature of disease that affected one’s intimate areas. Cancer was regarded with secrecy, and even referred to as the “Big C.” My descendants simply made the best with what they had; they used home remedies, and prayed through their problems. Unfortunately during that era, many African-Americans from the Mississippi Delta died early and suffered because they didn’t have access to quality health care services. They suffered from a lack of knowledge about disease prevention, a lack of financial resources and medical coverage, a lack of access to doctors, and a lack of social and political power as a people to control their health and their everyday lives. These struggles will never be forgotten. Sadly, many of these struggles continue today.

From my father’s personal experience, I have learned that if a doctor does not give a patient a thorough examination, welcome questions about one’s health or medication, encourage prevention, recommend specialists as needed, or display a strong level of concern for one’s health and general well-being, a problem exists, and it’s time to find a new doctor. Settling, waiting, “dealing with”, “putting up with”, and “hoping” that things will get better are not viable options for receiving quality health care.

There are millions of qualified, competent, professional, welcoming doctors who will operate in our best interests—they will put our needs first. However, as patients, we must proactively do the things our doctors recommend such as eat right, get rest, exercise, take our medications, eliminate risky behavior, know our numbers, and know our family health history of disease. On a weekly, if not daily basis, I talk to my parents about doing the right things to stay healthy. The exchange is mutual: we co-educate. As a family, we know that doctors can only do so much—we have to help ourselves.

To ensure that I say healthy and “practice what I preach”, I walk and exercise for 90 minutes several times a week, regularly visit my doctor and dentist, maintain health insurance, get plenty of sleep, and drink large amounts of water. I also steer clear of pork, beef, fried foods, and am working to become a vegetarian—this approach to health works for me.

I am truly grateful for the three wonderful African-American doctors who cared enough to dig deeper to help my father get on the right track with his health: Drs. Reginald Rigsby, Katrina Poe, and Derek Miles. In August, we had another six-month checkup, and my father’s PSA level was good. Since 2009, it has gradually decreased to from 4.2 to 1.9, to 1.7, to 2.0. The PSA fluctuations are common; however, Dr. Miles would like to see his PSA level at a 1.0 or below. My father is improving in other areas of his health, and as I complete this article, he is headed to see Dr. Poe, his primary physician for a regular checkup where he will receive a colonoscopy referral.

My father has not looked back and has remained in good spirits. He plans on retiring soon, but will always remain an active outdoorsman. And he and my mother are overjoyed to welcome a new grandson, “RJ” in October.

In closing, I encourage each of you to continue to talk to your family members about their health issues especially the common problems that disproportionately affect African-Americans such as cancer (breast, prostate, and lung), diabetes, high blood pressure, heart disease, high cholesterol, stroke, and HIV/AIDs, etc.

Remember, it “takes a whole village”—take a family member with you to the doctor. If your family members won’t listen to you, print off literature for them, highlight the important sections of it, read it to them, and leave it for them. Sometimes fear manifests in the form of resistance, but if you keep talking and explaining to your family members the need for self-care, nutrition, exercise, rest, and regular doctor’s visits, you will have an impact. Have a health fair at your family reunion or church. Co-sponsor awareness events with your social organizations. There is so much to be done to promote health and wellness within the African-American community.

Finally, never settle for unfair treatment, don’t fear asking your doctor questions, proactively “doctor shop”, and explore a full range of options when it comes to your health. Having an illness like prostate cancer is not a death sentence, but not knowing your own power as a patient can be.

For resources on Prostate Cancer please visit:

US Too International: www.ustoo.org

The National Prostate Cancer Foundation: www.pcf.org

The American Cancer Society: www.cancer.org

The National Cancer Institute: www.nci.org

Byline

Shani K. Collins is a Mississippi Delta native and a proud graduate of Tougaloo College and Clark Atlanta University. A freelance writer, she is completing doctoral studies in social work at the University of Alabama. Her dissertation research will focus on high breast cancer mortality rates among older, rural African-American women from the Mississippi Delta. You may visit her at www.shanicollins.com.

This article was written in honor of my father, Charles W. Collins, my late grandfather Dewitt Collins Sr., my uncles, and the many men whose lives have been or will be affected by prostate cancer.

1 comment:

dapper86 said...

Thank you for this article. I am a prostate cancer survivor and wish I knew more about it before I was diagnosed. You can bet that I do now and am sharing what I have learned, and am learning with anyone who asks. The one thing I will share now is that there are so many variables, age, family history, stage of the disease, that it makes treatment very individualized. Any information I share will hopefully help point people in the right direction as your article does. Thanks again.