Guest blog by Lauren Davis, Susan G. Komen Community Grants Manager
Six years ago, a young woman, age 25, called my office in tears. She was uninsured, had no reliable source of income, and had noticed a lump of increased size as well as spontaneous nipple discharge in her right breast. Through the generous funding of the local Komen Affiliate in Philadelphia, she received an ultrasound, and after, a breast biopsy.
“Is it breast cancer?” she asked. “I have no family, and no one to support me. If I have breast cancer, I’ll have to stop working. And if I stop working, I will have no money for a bus pass. I have no insurance – how will I even pay for my care? What will happen to me?”
As a patient navigator, I was tasked with finding the answers to these difficult questions. But more importantly, I was charged with the responsibility to ensure that this patient received access to quality care and the tools necessary to fight a potential diagnosis of breast cancer, regardless of any external constraints.
By definition, patient navigation is a process by which an individual – a patient navigator – guides patients through and around the barriers in the complex cancer care system to ensure timely diagnosis and treatment. There are many different types of patient navigators, though, most common are clinical nurse navigators, social workers, and lay health advocates from within the community.
Often, patient navigators are the first line of defense in the fight against breast cancer. We personally guide patients into and through the mammography screening and diagnostic processes, and onward through treatment and survivorship, by scheduling appointments and ensuring compliance with recommended plans.
Along the way we offer individualized education, and provide assistance in “navigating” the murky waters of accessing the healthcare system. We break down financial, transportation, and childcare barriers. We provide guidance on securing necessary psychosocial support. And we work to prevent lapses in care because of differences in language or culture.
Recent evidence1 suggests that patient navigation has a substantial impact on improving breast cancer survival rates. Because of this, Susan G. Komen has supported this intervention as a means to ensure equitable access, quality care, and enhanced patient outcomes for all. Earlier this week, we announced the launch of a new patient navigation program which seeks to help women and men nationwide who may be facing this disease.
To many in need, patient navigators are a modern day superhero, fighting alongside any woman (or man) facing a breast cancer diagnosis.
Six years ago, that woman in need was facing breast cancer.
Realizing the magnitude of her situation, I took a deep breath and responded, “Whatever obstacle you face, we face together. We are in this fight to win. I have the tools, and you have the strength. Now let’s get down to work.”
(Follow-up: I am so thrilled to report that we were able to access medical assistance and appropriate care for this young woman, and she is now cancer-free, and happily married with two little boys!)
1 Freeman, H. Patient Navigation: A Community Centered Approach to Reducing Cancer Mortality. J Cancer Educ; 21(Suppl): S11-S14, 2006.
Guest blog by Yarazetd Mendoza-Camargo Community Outreach Coordinator at the Consulate of Mexico in Philadelphia
When Susan G. Komen invited me to participate in the pilot project team for the new Breast Cancer Education Toolkit for Hispanic/Latino Communities, I was very motivated. This program would give me the opportunity to share the experience I had acquired working as outreach coordinator at the Consulate of Mexico in Philadelphia, and through organizing multiple education events with the Ventanilla de Salud (VDS). The VDS is a program that was created in 2003 to address one of the top priorities of the Mexican Consular Network: improving access to health services and promoting a culture of preventive health care among Mexicans in the United States.
This process gave me a more accurate perspective on breast health and breast cancer, and helped me to better understand the common problems that all the consulates and VDS face in promoting breast cancer awareness. Fortunately, the project also gave me the opportunity to provide feedback that reflected the need for this Toolkit to be culturally sensitive and bilingual for both the Hispanic community and their educators.
The Toolkit was developed by Komen as a way to provide educators ways to integrate breast cancer education into new or existing breast cancer educational programs. It provides culturally-specific communication resources, videos, practical tools and materials designed for use by experienced educators as well as new educators working in the Hispanic/Latino community. These materials and resources make it easy to share information with a Hispanic audience.
The first time the VDS coordinator and I planned an educational event using Komen’s Toolkit, it was easier for us to identify the results we wanted to achieve, and to tailor our talking points to the needs of our community. We wanted to engage our audience – emphasizing the importance of breast cancer education, encouraging them to know what is normal for them and to visit a health care provider regularly. The Toolkit provides us with important information and numerous resources that help us plan our contents to the particular needs of each event.
The Toolkit has also helped us build a closer relationship with our community. The tips it includes to approach our audience create an inviting atmosphere to share sensitive information. For example, two women came into the Consulate for services and while they were waiting, they listened to the breast self-awareness PowerPoint presentation. These two women felt confident to approach the VDS promotora. They shared their concerns privately, and were both referred to a partner organization to be screened (although, thankfully, neither woman was diagnosed with breast cancer).
I am really thankful to Komen and its partner organizations for all the hard work they put into creating this Toolkit. It has been a very useful tool to all the VDS personnel, and we will continue to use it in our outreach to Hispanic/Latina women across the U.S.
The following blog appeared in The Huffington Post on November 5, 2014.
In 2003, 30 men in Melbourne, Australia, wondered what had become of that proud symbol of masculinity — the moustache. They decided to dedicate the month of November to adorning their upper lips in the style of Tom Selleck and Olympic champion Mark Spitz. They called their movement “Movember.”
It all began as a joke among friends. But in little more than a decade, “Movember” has grown into a powerful force that puts men’s health first during the eleventh month of the year.
“Movember” seeks principally to raise awareness about cancers affecting males, including prostate and testicular cancer, but we should not forget that breast cancer, while rare, is a potentially fatal disease in men.
It is estimated that more than 2,300 cases of invasive breast cancer will be diagnosed in men in the United States over the next year (compared with 230,000 women). Unfortunately, men are usually diagnosed with breast cancer at a later stage than women, primarily because they are less likely to know about risk factors and symptoms, or to report their concerns to a healthcare provider.
One reason, of course, is that men don’t undergo regular breast screenings such as mammograms. Another is that men may be embarrassed by the possibility of having a “woman’s disease.” Beyond that, men are simply not taught to look for the warning signs of male breast cancer, which include:
- Lump, hard knot, or thickening in the breast, chest, or underarm. This is usually painless, but may be tender
- Change in the size or shape of the breast
- Dimpling, puckering, or redness of the skin of the breast
- Itchy, scaly sore or rash on the nipple
- Pulling in of the nipple or other parts of the breast
- Nipple discharge (in rare cases)
These symptoms are not always a sign of cancer, but a health care provider should be consulted immediately if any are present. This is especially true if a man has particular risk factors for breast cancer, including getting older (breast cancer in men is most commonly diagnosed between ages 65 and 67); a family history of breast cancer; being overweight or obese, which can increase estrogen levels in the body; heavy alcohol use; and use of some hormone drugs employed to treat prostate cancer.
So “Movember,” immediately following National Breast Cancer Awareness Month, is also the perfect time to focus on all cancers that affect men.
It is also an appropriate time to pay tribute to all the men who have played an irreplaceable role in supporting their wives, sisters, mothers, and friends who have fought, or are fighting, breast cancer. The men who help see their loved ones and families through diagnosis, treatment, and recovery have earned our recognition and heartfelt thanks, not just in “Movember,” but all year around.
Take care of yourselves and those you love. For more information about Movember and cancer, visit http://us.movember.com/. For more information about breast cancer (in women and men) visit www.komen.org.
Blog by Jacqueline McKnight, Scientific Programs Specialist at Susan G. Komen
Metastatic breast cancer (MBC), or Stage IV breast cancer, is different from early-stage breast cancers because it cannot be cured.
People living with MBC transition from one treatment to a new treatment for the rest of their lives. Metastatic Breast Cancer Network (MBCN) President, Shirley Mertz, wants that to change. Her mantra, “Scan > Treat > Repeat: Stage IV Needs More” was printed on t-shirts, rally towels and power point slides at the Komen-supported MBCN 8th National Conference. Advocacy was a major theme of the meeting: personal advocacy, patient advocacy and political advocacy were all highly encouraged.
During the opening session, women and men living with MBC were asked to stand and then sit down as the years that had passed since their diagnoses were read aloud. Those standing the longest had been living with the disease for 16 and 17 years. Approximately 75 percent of the attendees had never been to a MBCN meeting. Many had never spoken to anyone else who lives with the disease. Learning that people can live and thrive with MBC was a powerful and emotional experience.
Speakers shared their stories and offered advice. Cathy Spencer, a former car salesperson turned poet who didn’t think she would live to see her 50th birthday, received resounding applause when she said, “I’ve stopped living the life I had planned and am now living the life that is waiting for me.” Participants laughed together watching a video called “Dumb Things People Say to people living with Metastatic Breast Cancer,” cried together listening to survivor stories, and found encouragement during networking times relating to and understanding the journeys of their peers.
The information provided by experts at this meeting included Komen Scholars Drs. Elizabeth (Claire) Dees and Lisa Carey, along with Brinker Award Winner Hyman Muss. These experts spoke on a variety of topics from clinical trials to the latest treatments to how to speak with your children. The sessions were not only of the highest caliber, but actionable and useful to attendees.
It was my pleasure to represent Susan G. Komen at this impactful meeting. Some people living with MBC feel lost at Susan G. Komen events, overwhelmed by the pink and by messages of survivorship. Some question if they are welcome or belong anywhere in the continuum of Komen’s support network. Many don’t know about all of the services, research and conference support that we invest for those living with MBC.
Komen honors the memory of its namesake and all those who have been lost to MBC by providing travel scholarships to this conference for those who now live with MBC in the hopes of reducing their isolation and building knowledge about the medical advances that help people live longer with MBC. There is a place at Komen for those living with MBC and I am honored to have been among those who shared that message at the MBCN 8th National Conference!
Guest post by Komen Virginia Blue Ridge Affiliate
Like many Susan G. Komen Affiliates, Komen Virginia Blue Ridge is driven by the vast need for funding within our service area. Our goal being to fulfill Komen’s mission – to save lives and end breast cancer forever – a principle that we continue to be reminded of annually, as the call for grant funding produces an increasing amount of requests each year.
In 2014 alone, we were able to fund less than half of the requests we received, even though all organizations possessed worthwhile goals and were more than deserving of our support. After observing this steady increase in requests, our Board and staff quickly realized more needed to be done within our community in order attain our mission-related goals and maximize fundraising potential.
After seeing great success with our Race for the Cure®, yet remaining flat in revenue, the idea for the Pink Promise Luncheon was born. From the start we had lofty goals for our inaugural event – a unique location, fantastic speaker, wonderful food, extensive guest list, and dedication to our goal of raising awareness and funding for Susan G. Komen®.
From the beginning, the outpouring of support for our event within the Virginia Blue Ridge Community was truly humbling, with many individuals and business owners rallying together for the cause. A local venue donated the event space. Kroger donated all of the flowers and centerpieces. A caterer (whose mother was a survivor) prepared the meal at cost. We filled the venue to capacity with 400 guests and acquired over $20,000 in new sponsorship.
Outreach for the event was a true grassroots effort. Our community was extremely fortunate to be able to welcome Komen President and CEO, Dr. Judy Salerno, who paid a special visit to our Affiliate and served as a guest speaker at the event. We were also honored to welcome husband of local survivor and author Dick Wall, who spoke about his wife Carol Wall’s journey through life and her experience with breast cancer.
The entire event was focused on the Promise – with each guest being asked to write a promise to themselves that we plan to mail to them in three months as a reminder. Each guest also received a copy of Nancy Brinker’s book “Promise Me,” and we had the honor of hearing Dr. Judy Salerno speak about the Promise Renewed – Komen’s Principles and Priorities.
The luncheon, which was filled with hope and inspiration, left our 400 guests in awe with many expressing the importance of our story, the work done within the community and our mission. The Virginia Blue Ridge Affiliate covers a large rural area with a medically underserved population. There are many disparities in our region including high rates of poverty and unemployment. It is with this in mind that we work so hard to fund local programs to provide screening and diagnostic mammograms, education and treatment to our uninsured and underinsured neighbors. Many attendees also expressed their renewed sense of urgency in getting regular mammograms, but also making sure those around them do as well.
We have already started brainstorming ideas for next year’s Second Annual Pink Promise luncheon, in hopes to continue to leverage this opportunity to share our message and move the mission forward.