| My Story
Sherrie Ellenburg |
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My husband, Kenny, and I were married on June 17, 2000. It was the happiest day of my life. We had beautiful dreams for the future. I remember saying our vows as if it were only yesterday, "For richer for poorer, in sickness and in health, until death do us part." My vows took on a deeper meaning when I heard the doctor say to Kenny, "You have Prostate Cancer."
When Kenny was first diagnosed on November 24, 2003, I felt as if my whole world stopped at that moment. I could hardly see for the tears I could feel building inside me. But I didn't want to fall apart. I wanted to be strong for my husband. As the doctor began to explain his diagnosis and possible options, I could see our dreams disappearing before our eyes.
In December 2003, Kenny and I traveled to Duke University for a second opinion. Where we were expecting to be given HOPE, we instead came home devastated. The doctors all came to the conclusion there was nothing that could be done. At 42 years of age, Kenny's cancer was too advanced for surgery.
The only treatment recommended for Kenny was radiation with hormone therapy. It seemed as if the questions in my mind never ended. How would it make him feel? How could I help him? How would I ever be able to live my life without him? Where would we get the strength to make it through? How were we going to cope?
For a young couple, this was a lot to accept. We had only been married for 3 years. We were still on our honeymoon! Everyone is different but for us we learned talking to each other helped. We talked a lot about our fears. We talked about our lost dreams. We grieved the loss of the family we had hoped to have together. But we laughed and loved more. We went on dates together. I watched Star Trek with him (I don't like Star Trek!) and he watched "chick flick" movies (he tolerated them) with me. We made memories to last a lifetime.
Through it all, Kenny never complained. He never talked of the incredible pain. His only concern was for me. His last day home was spent doing the thing he loved most, cooking for me. I argued he needed to rest, but he argued I was sicker than him. Who could argue with someone who loved you that much to put you first above their own pain? I couldn't. Not when I knew it gave him joy to care for me like it gave me joy to care for him.
Kenny wanted to help others even in his pain. He once said, "If what I am going through helps just one person then it is worth it all." He did his part by encouraging his family and friends to have their yearly exams. He answered any questions that were asked of him.
I am often asked how we coped with Prostate Cancer. If you (or someone you know) have been diagnosed, the following suggestions helped us to cope.
1) Face Prostate Cancer together as a
Family.
2) Encourage him to talk about his
experiences and keep a daily
journal.
3) Seek out a local prostate cancer
support group and attend with him.
4) Educate yourself.
5) Help him to keep his faith:
encourage him to let his church
family help and pray.
6) If he becomes depressed, encourage
him to talk to his doctor.
7) Two key words for your entire family
and friends: Encourage and
Twenty months after he was diagnosed, he went to his heavenly home on August 3, 2005. Two months later I was devastated to be told I had Ovarian Cancer. I am cancer-free today thanks to early-detection. Because of my own experiences with cancer, I began educating my community about Prostate Cancer one year after his death.
In the past two years, I have dedicated my time to the Prostate Cancer Coalition of North Carolina and Women Against Prostate Cancer. It's my hope that we can help other families avoid the pain we suffered.
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Office of Advocacy Relations Present
Members of cancer advocacy organizations, survivors, family, and friends are encouraged to participate in
the teleconference series to learn more about NCI's important cancer research programs and how
advocates are involved. Callers will have the opportunity to ask questions.
The Carolinas Center for Hospice and End of Life Care presents
The Carolinas Pain Congress
September 25 -26, 2008, Charlotte Mariott Executive Park, Charlotte NC.
You may register on-line at
Health Careers Conference:
Preparing Future Health Leaders
"Hand to Hand, Generation to Generation"
Featuring: Dr. Louis W. Sullivan
Saturday, October 4, 2008
8:30 am - 2:30 pm
North Carolina Central University
Prevent Cancer Foundation
We continue Prostate Cancer Awareness Month with another humorous take on a serious subject getting checked for prostate cancer. The Prostate Pete E-card is part of the Prostate Pro Quiz.
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NC Comprehensive Cancer Program Staff |
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Walter L. Shepherd, M.A.
Program Director - NC Comprehensive Cancer Program
Executive Director - NC Advisory Committee on Cancer Coordination & Control
(919) 707-5330
Walter.Shepherd@ncmail.net
Dianah Bradshaw, R.N., M.S.H.A.
Nurse Consultant
(919) 707-5333
Kenisha Bethea, MPH, CHES
Assistant Director
(919) 707-5337
Tawanda Burno, BS
Administrative Support - NC Comprehensive Cancer Program
(919) 707-5329
Rachel Walton
Regional Coordinator - Raleigh
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The NC Cancer Partnership Survivorship Work Group has developed a Survivorship Pin
unique to North Carolina.
If you are a cancer survivor, caregiver, or advocate in NC, we
now have a symbol for you to wear to show your support for other survivors as well as
awareness for continued cancer control efforts.
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Join Our List
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Greetings,
Please enjoy reading the 2nd edition of Prostate Cancer Resources in North Carolina. |
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The Prostate Cancer Coalition of North Carolina - Prostate Cancer Awareness Month Update 2008 |
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Each year about 900 North Carolina men die of prostate cancer. The most appalling aspect of this fact is that prostate cancer can almost always be effectively treated or managed when it is detected and diagnosed early. The Prostate Cancer Coalition of North Carolina (PCCNC) has spent the last seven years forming networks and building collaborations across the state to better understand the reasons for this needless loss. Throughout 2007, the PCCNC conducted a comprehensive series of interviews. Participants included renowned medical professionals focusing on the care and treatment of men with prostate cancer, researchers, screening organizers, primary care physicians, patients, caregivers, survivors, community outreach volunteers, and more to better understand the challenges associated with reducing the death rate while improving quality of life for all men diagnosed with prostate cancer. The result of this "Needs Analysis" was the development of a shared "Action Plan". This plan is for everyone working to increase awareness, provide prostate screening service to their community, and both medical and supportive care for men with prostate cancer. You can view both the Needs Analysis and the Action Plan at www.pccnc.org.
Probably our biggest challenge is a problem that has confounded the medical community for decades. The dilemma is that there are some forms of prostate cancer that do not require treatment. Conversely, there are some men with very aggressive cancer that will almost certainly kill them if it is not treated in a timely manner. So the problem is not the diagnosis of the disease, but rather our collective understanding about the importance of the diligent use of tools and resources to facilitate the most accurate understanding about the aggressiveness of the individual's cancer that is possible. With this comes an understanding of which treatments are more appropriate for accomplishing the patient's goals for both survival and quality of life. The PCCNC is working to develop a collective repository of the best of these tools.
The good news is that, through this Needs Analysis, we were able to uncover several simple solutions that address the needs and concerns of all parties. First and foremost, we must continue to work to increase awareness not just of prostate cancer risk, but of prostate health. The great thing about prostate screening is that both tests included in the screening (the PSA Blood Test and the DRE) help to identify a number of prostate health issues. Evidence is building that indicates treatment for several benign conditions commonly identified during screening may actually prevent some forms of prostate cancer. When you couple that with the fact that prostate cancer's most common symptom is no symptom at all, screening becomes as logical a tool for a man's urologic health as a PAP smear is for a woman's (only much less invasive).
Working with some of our most dedicated volunteers, we've developed a series of 7 public service announcements that will improve general risk awareness. Each was written by the spokesperson featured in the piece and edited by the PCCNC to assure consistent messaging. You can view them at www.pccnc.org. We are also working to develop a tool that will facilitate better health maintenance practices for men. The importance of the adoption of early annual health exams in order to begin the tracking of personal health markers such as PSA and cholesterol can be very helpful for identifying health issues as early as possible. This, of course, opens the door to the possibility of less invasive treatment options and less damage from the disease itself.
Another important point uncovered during this needs analysis was an apparent consensus that, for men who opt to be screened for prostate cancer, they should receive health services consistent with what renowned specialists focusing on the care and treatment of prostate cancer patients consider to be "standard of care." We hear from these urologists and oncologists across the state, and even the nation, that the easiest point of reference for these guidelines is the National Comprehensive Cancer Network (NCCN). Of course, this finding assured us of the importance of one of our pilot projects. Through this project, we provide via the North Carolina Academy of Family Physicians a simple one page laminated prostate screening guideline sheet highlighting the aspects of early detection that are most likely to occur in a primary care practice. One side offers points from the NCCN and the American Urological Association (AUA) about when a man's examination results require follow-up by a specialist. The other side offers a discussion guide based on information from the AUA for primary care physicians to share with their patients prior to referring them to a urologic specialist.
The important thing we have to keep in mind is that every man diagnosed with prostate should end up with the best outcome possible for his individual situation. This all starts with early detection and can only be assured with ongoing patient education and support. Information and compassion are essential when coping with all forms of cancer - this must, to every extent, continue through the entire process of diagnosis, evaluation, treatment, and ongoing management to reduce odds of recurrence.
Please visitwww.pccnc.org for more information and to find out about prostate health awareness and screening events in your area. |
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Prostate Cancer Disparities: Addressing the Psychosocial Needs of African American Prostate Cancer Survivors and their intimate Partners |
African American men have the highest prostate cancer incidence and mortality rates in the U.S. and the world. Here in the state of North Carolina, ethnic group disparities in prostate cancer are particularly pronounced. According to the North Carolina Office of Minority Health and the State Center for Health Statistics, African American men are almost 3 times as likely to die from prostate cancer as compared to white males in our state. Another troubling finding based on our state cancer statistics is that the highest prostate cancer incidence and mortality rates appear to be trending toward the eastern region of the state. Over the last 2 reporting periods, spanning 2003- 2006, eastern North Carolina counties have been increasingly represented among the top 10 counties for prostate cancer incidence and mortality. And the most recent statistics indicate that all of the counties most affected by prostate cancer are eastern North Carolina counties, including Northampton, Martin, Perquimans, and Martin Counties.
This disproportionate disease burden results not only in physical challenges, but emotional and social challenges as well. Advances in surgical techniques used to treat prostate cancer result in improved post-treatment quality of life for many men. However, sexual and urinary dysfunction, and other treatment side-effects often persist well beyond the immediate surgical recovery period, affecting not only the survivors, but also their intimate partners and intimate relationships. The cumulative effect of these challenges can strain the coping resources of both survivors and their partners.
Psychoeducational and supportive interventions are an important component of care for prostate cancer survivors as they can help men and their intimate partners cope with persistent symptoms that can affect physical, emotional, and social wellbeing. However, many prostate cancer survivors remain underserved with regard to educational and supportive services after treatment. Also, partners are rarely included in such interventions despite being a primary source of social support for survivors. And African American men appear to be particularly underserved, and may therefore have the greatest need for such services.
To better address the psychoeducational and support needs of African American prostate cancer survivors and their partners, Dr. Lisa Campbell, a Health Psychologist and Associate Director of the Center for Health Disparities Research at East Carolina University, will lead a team of researchers in conducting the Prostate Cancer Recovery Enhancement Study (PROCARE), funded by the National Cancer Institute. The PROCARE Study will evaluate the efficacy of telephone-based coping skills training and prostate cancer education interventions for improving quality of life among African American prostate cancer survivors who have had prostate cancer surgery for localized disease and their intimate partners. Dr. Campbell and her team believe that men and their partners can benefit from information about medical approaches to symptom management, but are also in need of "re-education" about ways to maintain physical and emotional intimacy and social functioning in spite of persistent sexual, urinary, or bowel symptoms.
The PROCARE Study is a collaboration between Dr. Campbell's team at ECU and clinical researchers at Duke Medical Center, as well as several community-based organizations, including the Minority Prostate Cancer Awareness Action Team, the National Black Leadership Initiative on Cancer, and the Triangle East Chapter of 100 Black Men, Inc.
Because the PROCARE Study is telephone based, study participants will be spared the transportation burden often associated with participating in research studies. Using this tele-health approach, Dr. Campbell anticipates reaching African American prostate cancer survivors and their partners throughout the state, but particularly in the eastern North Carolina region that has been so drastically affected by prostate cancer disparities.
For more information about the PROCARE Study please contact Dr. Campbell at: East Carolina University, Center for Health Disparities Research, 1800 West 5th Street, Suite 6, Greenville, NC 27858; 252-328-5519; PROCARE@ecu.edu.
Resources:
American Cancer Society. Cancer facts and figures for African Americans 2007-2008. Atlanta: American Cancer Society.
Carrol, P. R., Carducci, M. A., Zietman, A. L., Rothaermel, J. M. Report to the Nation on Prostate Cancer: A Guide for Men and Their Families. 2005
Santa Monica, CA: Prostate Cancer Foundation.
North Carolina Department of Health and Human Services, Office of Minority Health and State Center for Health Statistics. Racial and Ethnic Health Disparities in North Carolina: Report Card 2006. http://www.schs.state.nc.us/SCHS/pdf/ReportCard2006.pdf
North Carolina State Center for Health Statistics. http://www.schs.state.nc.us/SCHS/deaths/lcd/2006/prostate,html
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The Carolina Community Network to Reduce Cancer Health Disparities (CCN) |
Engaging communities in cancer health disparities education and research efforts is essential in the reduction of cancer morbidity and mortality. The Carolina Community Network to Reduce Cancer Health Disparities (CCN) at the University of North Carolina at Chapel Hill has developed a Community Grants Program for community organizations of all sizes, capacity and experiences to become engaged in efforts to reduce cancer disparities in North Carolina communities. Grant activities can include cancer education and awareness programs and can provide resources to support organizations interested in developing community-academic research projects.
Since 2007, CCN has awarded grants to 12 community organizations, totaling nearly $80,000. Thirteen counties (Alamance, Caswell, Chatham, Edgecombe, Guilford, Halifax, Montgomery, Nash, Northampton, Orange, Randolph, Rockingham and Wilson) in two distinct regions of the State are targeted as part of this initiative. Community grant recipients have developed prostate cancer projects in 9 of our 13 targeted counties. Organizations such as NIA's Ark, Inc., the Black Men's Health Initiative (BMHI), Roanoke Salem Outreach and Development Corporation, the Rural Health Group, Inc., and Cornucopia House are using focus groups, support groups, workshops, roundtable discussions, and lay health advisor initiatives to actively address prostate cancer in their communities.
Funding for the CCN began in 2005 from the National Cancer Institute Center to Reduce Cancer Health Disparities (U01CA114629) and is administered by the UNC Lineberger Comprehensive Cancer Center. The mission of the CCN is to reduce breast, prostate and colorectal cancers among adult African Americans in North Carolina using long-standing university-community relationships and the community-based participatory research expertise at UNC to enhance and extend cancer education, research and training.
For more information about the CCN or to become involved, please visit our website:
email Crystal Meyer at cmeyer@email.unc.edu. |
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Racing to Spread the News |
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written by Diane Johnson
Prostate Net
If you live in the Southeast and are a fan of enduro dirt bike racing, you might have seen a guy in red speed by. But since he was probably going 50 mph on a 100-mile wooded trail, you might have missed his logo: PCA Racing. (PCA stands for "Prostate Cancer Awareness".) The guy on the bike, Dan Newman, knows a lot about dirt bike racing--he's been racing since he was 14--and, unfortunately, a lot about prostate cancer.
Dan, his wife, Raina, and their two children had moved from Oklahoma and settled in North Carolina. He was working at a car dealership as a parts distributor and training and racing on a regular basis. In the spring of 2005 he was struggling with a sinus infection and decided to visit the doctor for a complete check-up. When the results came back, his PSA was a little higher than his normal 3.0; it was 3.9. Dan asked for a repeat PSA test to verify the results. This one was 3.0. Dan said, "I had been following my PSA for quite a few years, ever since my Dad discovered he had prostate cancer. My PSA had been 3.0 a couple of years earlier, so I wasn't worried." But his doctor kept insisting he see a urologist and Dan finally gave in and saw him in the summer of that year. His DRE was normal, but the urologist wanted to do a biopsy "just to be on the safe side." The biopsy showed cancer in one of the eleven samples. At 46 years old, Dan had prostate cancer.
Dan decided to have surgery like his father, who is still well and cancer-free today. "I felt that the best choice for my age was to remove the cancer from my body," he said. Since his father had described his own surgery as being "gutted", Dan was understandably anxious about the procedure. But his doctor calmed his fears by taking the time to answer all of their concerns. Dan was particularly worried about his allergy to anesthetics, long-term sexual side effects, and when he would be able to race again. The doctor reassured him with stories about patients who "had come out of surgery and gotten back on the treadmill two weeks later." He thought Dan might be able to ride again in about two months. Dan said, "I took this as a personal challenge. I was going to try to beat that estimate."
He had a radical, nerve-sparing prostatectomy in January, 2006. The surgery went well, partly because Dan was in such good physical shape. Fortunately the cancer, regraded to a Gleason 7 after surgery, was contained, although his surgeon said it was very close to the neck of the bladder. But there were complications. Instead of the typical two days, he had to stay in the hospital for six days due to internal bleeding. He climbed back on his bike three months after surgery. During a shower about a month later, he found a lump in his lower groin. It was an inguinal hernia (a side effect that occurs in about 10-20% of prostatectomy patients. He had surgery for the hernia in May 2006 and was "off the bike for another 16 weeks." Two years later, Dan is well and racing.
When Dan's father's prostate cancer was discovered during routine bloodwork before knee surgery, there were even more surprises in store. The family discovered that Dan's grandfather and two of his uncles had actually died of prostate cancer, but the family was told their deaths were from some other cause. Dan said, "It seems that prostate cancer was felt to be such an embarrassing disease that nobody wanted to talk about it." Dan has dedicated his life to making sure that won't happen again. He rides under the banner of PCA Racing; has produced and placed posters (one with the headline "Procrastination Kills") in doctor's offices and on cancer awareness websites all over the world; is shooting public service commercials; works with local prostate cancer organizations in North and South Carolina; and spreads awareness at summits, health fairs, and congressional meetings in Washington D.C. He has ambitious plans for even more outreach: new posters that will focus on reaching African-American communities and encouraging women to get their men in for a check-up. He also plans a 2009 calendar that will feature all of the posters.
"Wait, hesitate, procrastinate and your chances won't be nearly as good," one of Dan's posters says. Dan is determined to get the message out to anyone and everyone he can. And he intends to use his and his family's experiences to, " show that having prostate cancer does not have to mean the end of enjoying a normal life. The DRE is no big deal, the biopsy is no big deal, and the surgery is less than a woman goes through when she has a C-section," he adds. "I got back on a race bike less than three months after having prostate cancer surgery. I want that to be a testimony to other men that they can get past this terrible disease and move on with their lives."
You can contact Dan Newman at 704-307-9933 or pca.racing@hotmail.com
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Sincerely,
Kenisha Bethea
NC Comprehensive Cancer Program |
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