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NCCS - National Coalition for Cancer Survivorship
  • About
        • About Us

        • NCCS is the oldest cancer survivor-led non-profit organization in America. We advocate for quality cancer care for all touched by cancer.

        • About NCCS

        • Our Mission
        • What is Advocacy?Learn about the different types of cancer advocacy, from personal advocacy to public interest advocacy.
        • Our HistoryRead how NCCS’s leaders coined the term “cancer survivor,” and established the nation’s first survivor-led non-profit organization.
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        • Make A GiftSupport our mission of quality cancer care for all with a gift to NCCS.
        • The 1986 ClubMake a monthly commitment to support NCCS, empower cancer survivors, and advance public policy.
        • Ways to GiveLearn about other ways you can contribute to NCCS such as planned giving, employer matches, shopping online, and more.
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    • NCCS News
    • Advocate SpotlightEach month, NCCS highlights a cancer survivorship advocate, sharing their story and the work they do in their communities.
    • Policy CommentsRead NCCS’s comments to Congress, HHS, and other federal policymakers in Washington, DC on proposed rules and legislation.
    • Issue StatementsRead NCCS statements on pressing issues and developments in Washington affecting cancer survivors and their families.
  • Policy
        • Policy

        • Public policy is government action, in the form of legislation, regulation, funding, and other actions. Public policy affects people with cancer and the cancer care system in many ways.

        • Our Policy Priorities

        • Quality Cancer CareQuality cancer care is essential for patients. Learn how NCCS and others define quality.
        • Access to CareNCCS believes cancer care and clinical trials should be affordable and accessible to everyone.
        • Health EquityThe cancer experience is not the same for everyone. NCCS works on policy efforts to reduce disparities in outcomes.
        • Current Issues

        • Comprehensive Cancer Survivorship Act (CCSA)The CCSA is a large comprehensive bill introduced in Congress that aims to improve quality of care in all stages of a diagnosis.
        • Cancer Care Planning and Communications Act (CCPCA)CCPCA is a bill that would provide a billable Medicare service code for cancer care planning.
        • DIEP Flap AccessNCCS advocates for protection of access to DIEP Flap Breast Reconstruction Surgery for all breast cancer survivors.
        • Policy CommentsRead NCCS’s comments to Congress, HHS, and other federal policymakers in Washington, DC on proposed rules and legislation.
        • Issue StatementsRead NCCS statements on pressing issues and developments in Washington affecting cancer survivors and their families.
        • Quality Measurement Research
  • Get Involved
        • Get Involved

        • Whether you’re new to cancer advocacy or already have experience as an advocate, there are numerous ways you can get involved with NCCS.

        • Join NCCS

        • Cancer Policy and Advocacy Team (CPAT)CPAT is a program for survivors and caregivers to learn about pressing issues that affect quality cancer care, in order to be engaged as advocates in public policy.
        • Elevating SurvivorshipA patient-led initiative — NCCS mentors advocates (Elevate Ambassadors) to fill vital gaps in survivorship care in their community.
        • Survivorship ChampionsAn NCCS program for clinicians and researchers who are interested in improving care for cancer survivors.
        • Advocacy OpportunitiesThis page provides a list of upcoming events, webinars, conferences, and advocacy campaigns from NCCS and other leading cancer organizations.
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        • NCCS conducts an annual State of Survivorship Survey, in partnership with Edge Research, to delve into the cancer patient and survivor journey. This study captures a range of perspectives to better understand how NCCS can support its mission to advocate for quality cancer care for all.

        • Reports by Year

        • 2023 Survey ReportThe 2023 Survey explored the caregiver experience for the first time, and features new data on the effect of cancer treatment on employment.
        • 2022 Survey ReportThe 2022 Survey found significant disparities in cancer care that impact people of color, young adults, women, and those with metastatic cancer, at higher rates.
        • 2021 Survey ReportThe 2021 Survey demonstrated that when patients receive quality care, have excellent support, and have financial resources, they are more likely to have positive outcomes.
        • 2020 Survey ReportIn the 2020 Survey, survivors reported that their care team is not helpful at addressing some common side effects of their cancer such as fatigue, anxiety, and depression.
  • Survivorship Checklist
        • Cancer Survivorship Checklist

        • The Cancer Survivorship Checklist is designed to be a simple, straightforward tool patients and caregivers can use as a guide for information critical to their care wherever they are on the cancer care continuum.

        • Start Your Cancer Survivorship Checklist
        • Survivorship Checklist Guide for Clinicians
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        • Survivorship ResourcesA collection of resources that provide information about navigating the cancer journey.
        • Cancer RehabilitationA supportive health care service that helps improve a person’s functioning during and after cancer treatment.
        • Integrative OncologyA field that combines traditional cancer treatments with therapies that support a person’s natural healing ability.
  • Resources
        • Resources

        • NCCS provides a wide variety of resources for both patients and caregivers.

        • Resources for Survivors and Caregivers

        • Cancer Survival ToolboxA free, award-winning audio program created by leading cancer organizations to help people better meet & understand the challenges of their illness.
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NCCS Advocate Spotlight: Marlena Murphy Finds Meaning in the Challenges

The Path to Purpose: Marlena Murphy Finds Meaning in the Challenges

October 11, 2023/in Advocate Spotlight, NCCS News Financial Toxicity, Health Equity, Psychosocial Care, Quality Cancer Care, Shared Decision-Making, Survivorship Care Advocate Spotlight
Marlena Murphy

Marlena Murphy

Advocate Spotlight: Marlena Murphy

Marlena Murphy’s cancer journey began when she discovered a lump in her left breast during her monthly self-check in May 2018. It was a moment that would change her life forever. Marlena contacted her primary care physician and was immediately scheduled for a diagnostic mammogram. Ultrasound imaging and a biopsy followed, ultimately revealing she had stage 3 triple-negative breast cancer. The next three months were a barrage of medical appointments, choosing a surgeon and medical oncologist, and scans, including a breast MRI, brain scan, and a PET scan. Her prescribed treatment course included chemotherapy, a lumpectomy, and radiation.

“My dad traveled from Washington, DC to Georgia to help care for me, and my 11-year-old daughter was a consistent caregiver,” she shares. “My church family played a major role in my overall cancer journey as well. Family, friends, and teachers and parents from my daughter’s school were and have been instrumental in providing transportation for us when needed. They prepared meals, cleaned, did laundry, paid for food, took me to and from treatment, or simply socialized with me, which has always been something I appreciate about having people care for me.” Marlena finished treatment in November 2019.

In the winter of 2022, Marlena’s Physical Therapist noticed her left breast was abnormally swollen. Marlena noticed a pin-sized lump under her right armpit a few weeks later. In March 2022, she faced a new chapter in her cancer journey when she was diagnosed with metastatic triple-negative breast cancer. This time, Marlena chose an oncologist who encouraged integrative treatments, like acupuncture, to help her manage the hot flashes and neuropathy she experiences because of her ongoing chemotherapy and immunotherapy treatments.

“The chemo and immunotherapy don’t cause too much disruption with my life,” Marlena reveals. “Although I have side effects from previously receiving chemo, including chemo brain (brain fog), I have figured out how to get around it.” One thing that is different this time around, Marlena notes, is caregiving. “Caregiving looks different with this diagnosis,” she says. “When friends asked how they could be there for me, I told them to make sure we meet up for a meal and socialize.” Marlena enjoys spending time with friends, going on trail walks, and spending time with her now 16-year-old daughter.

Marlena’s breast cancer diagnoses brought more than just health challenges; they brought financial challenges as well. “I had no idea what having cancer would cost because I was a person who never had to go to medical appointments outside of my yearly annual physical exams. The main challenge I faced from cancer was financial, and I had a full-time job,” she shares. Marlena returned to school after her first diagnosis, seeking a degree in counseling. While she didn’t have much help outside of support from her friends and family during her first bout with cancer, Marlena is grateful for the scholarships and emergency funding she received from her college and 6 months of financial support from a nonprofit called, Infinite Strength since her metastatic diagnosis.

Advocacy came naturally to Marlena. After completing treatments for her first diagnosis, she sought connection with other survivors. She volunteered as a patient advocate with the non-profit organization My Style Matters, and joined their Facebook support group, My Breast Years Ahead. Marlena felt sharing her experiences and supporting others facing similar challenges was rewarding.

Now, Marlena works as a mental health counselor, Program Manager for Guiding Researchers and Advocates to Scientific Partnerships (GRASP), and as a Community Advocate for TurningPoint Breast Cancer Rehabilitation. Advocacy work is meaningful for Marlena. “I live in God’s purpose for my life,” she shares, “providing mental health therapy for breast cancer survivors and being an advocate for breast cancer patients and survivors. I did not realize another purpose would come from that, but I am seeing that my purpose also includes providing mental health therapy to black men. Mental health therapy is still a stigma in the black community and even more specifically for black men. So, I am encouraged when I meet with clients and I start to see the work they are doing within their lives to heal mentally and emotionally.”

Marlena was first introduced to NCCS by another Cancer Policy and Advocacy Team (CPAT) advocate. “Yvonne Florence introduced me to NCCS and CPAT. I am so happy she did because attending the CPAT Symposium opened my eyes to the bigger picture of public policy advocacy. Previously, I participated in state-level advocacy by going to the Georgia state capitol and talking with Georgia legislators about statewide cancer policies. I never had the opportunity to speak with U.S. legislatures about nationwide cancer policies.”

Through the experience, Marlena realized that “our advocacy voices make a difference for all people experiencing cancer whether it is the patient or a caregiver.” She shares, “When I was going through cancer treatment, I did not pay attention to the laws and policies surrounding cancer or even realize that the guidelines, rules and regulations we have in place are due to advocacy and policy work. My focus was on getting through treatment and being able to survive. However, I realized after completing treatment in 2019 that survival was lonely. There were no more weekly medical appointments and I felt as if I was left to figure things out on my own regarding the next steps after treatment. I never knew that there could actually be a policy put in place for survivorship.”

Marlena is already looking forward to attending the CPAT Symposium again next year. This time, she wants to bring her daughter along so she can experience how impactful it is first-hand. “I want to give her a different perspective of what cancer advocacy looks like because my experience with NCCS showed me a different perspective of cancer advocacy work.”

Marlena’s advice for those new to advocacy and policy work is simple: seek out opportunities, sign up for resources like NCCS emails, and volunteer with organizations that align with your passion. “Try volunteering in multiple areas of advocacy to see where you feel fulfilled,” she says. “Get involved and ensure that your journey isn’t in vain.”

# # #

Learn more and Join the NCCS Cancer Policy & Advocacy Team »

Tags: Advocacy, advocate spotlight, caregivers, equity, financial issues, financial toxicity
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Link to: Cancer Policy and Advocacy Team (CPAT)

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The NCCS Cancer Policy & Advocacy Team (CPAT) is a program for survivors and caregivers to learn about pressing policy issues that affect quality cancer care in order to be engaged as advocates in public policy around the needs of cancer survivors.

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  • About
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Harmar Brereton, MD

Founder
Northeast Regional Cancer Institute

 

“Perhaps one of the most impactful collaborations in Dr. Brereton’s extraordinary career remains his early work and long friendship with Ellen Stovall. Through him, and in turn through the thousands of lives he has touched, Ellen’s work continues, and her mission lives on.”

—Karen M. Saunders
President, Northeast Regional Cancer Institute