• Facebook
  • Rss
  • Twitter
  • Youtube
  • Store
  • Donate
  • 0Shopping Cart
NCCS - National Coalition for Cancer Survivorship
  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us
  • Search
  • Menu Menu

Year-End MATCH (DEADLINE Dec 31): Donate & Make a Difference | Donate

FacebookProfile3

Reflections on Cancer Survivors Day: Managing Survivorship for a Lifetime

June 7, 2015/in Cancer News, Cancer Policy Blog Care Coordination, Care Planning, Clinical Guidelines, Quality Cancer Care, Survivorship Care NCCS News /by actualize
Post by Ellen Stovall

Post by Ellen Stovall, NCCS Senior Health Policy Advisor and 42-Year Survivor

On Sunday, June 7th, we are reminded by cancer centers to celebrate National Cancer Survivors Day®.  Today, there are a sea of colors for different cancer ribbons and wristbands, e.g., the ubiquitous pink for breast cancer, amber for bladder cancer, grey for brain cancer, yellow for all cancers, and so on.  But many of us do not wear our colors on our sleeves or our survivorship on our wrists.

For many, Survivors Day may be a day to be reminded of a life forever changed by a cancer diagnosis. For others, it becomes a date to mourn the loss of someone we lost too soon to cancer.  But for the majority of the thousands of survivors I have met over the past 40 years, our survivorship cannot be wrapped around one day on the calendar.

As one of more than 14 million people in our country who can use the word “survivor” to classify myself, (having had three diagnoses of cancer over the last 42+ years), and having been the leader of a national organization—the National Coalition for Cancer Survivorship (NCCS)—that coined the term “survivorship” in 1986, I can say that no greeting card or Survivor’s Day observance adequately quantifies what this experience is like. Survivorship—the period between a diagnosis and the rest of one’s life—does change one’s outlook.  As time passes, the emphasis for most of us “long-termers” shifts from length of life to quality of life.  This puts a different spin on those who cling to the length of one’s years as a measure of successful treatment, rather than how those years are lived—often with disfigurement, chronic pain, and the specter of other diseases caused by one’s initial treatment regimen, including premature aging. And then there are for some second and third cancer diagnoses.

31-Ellen_Fitz_Betsy-90dpi

Ellen Stovall, Dr. Fitzhugh Mullan (NCCS founding member), and Dr. Elizabeth J. Clark

As a 24 year-old wife and mother to our four-week old son, Jonathan (he is now 43), I was diagnosed with Hodgkin’s Lymphoma in 1971.  Following surgery and six months of radiation, a recurrence of the same diagnosis appeared 12 years later followed by a diagnosis of bilateral breast cancer seven years ago, resulting in a double mastectomy.  Those are my cancer diagnoses.  There is no wristband or day to commemorate the consequences of the treatment. I, and millions of others like me, live with a number of reminders of our survivorship.  Daily living with a heart, lungs, kidneys, bones and tissues that look and feel like those of someone 20 years older than my chronological years is both a clinical and psychological adjustment that most of us survivors experience, but is little discussed.

What most people diagnosed with cancer want is to be cured of the cancer itself; what few oncologists and their patients understand or even want to discuss are the consequences of those treatments and how they should be managed.  This is the world of cancer survivorship, and that population of survivors grows exponentially every day in large part because of the improvement in bringing new therapies forward to treat our cancer.  Knowing there are short and long-term consequences of those treatments is part of the planning for survivorship that must begin at diagnosis.  Choosing treatments with fewer long-term effects or intervening to prevent some of those effects is also needed.

cancer care planning infographic

What Is Cancer Care Planning? (Infographic)

Let me be clear about how grateful I am for my survivorship.  And my gratitude is compounded by my good fortune of having a supportive family, good health insurance, and a keen interest and study of health policies that can improve the quality of care we receive.  But balloons, cards, and one day devoted to cancer survivors does not begin to scratch the surface of the suffering that cancer survivors endure, including not being able to afford the care that may arrest our disease or the side effects that contribute to our enduring a poorer quality of life as we age. We survivors are supposed to be grateful to be alive and simply learn to live within a health care system that doesn’t know what to do with us.  For my millions of fellow survivors, and especially for our most vulnerable to these consequences—our children and young adults with cancer—who live in this Humpty Dumpty nether land, I wish you more than one day—I wish you all many days, years, and decades of survivorship.

Please know that what has happened to us matters. One day, following completion of our initial treatment for cancer, we will have visits with our doctors and nurses that create and implement (with us) a survivorship care plan that gives us a roadmap that we presently don’t have.   This plan will allow us to receive the appropriate follow-up surveillance and care to afford us a better chance for a better survivorship, with fewer hazard signs and potholes to navigate in the future.

Almost thirty years after defining survivorship, NCCS remains dedicated to changing the healthcare system to ensure that every cancer survivor receives a plan and appropriate survivorship care.  As we at NCCS advocate for health policy changes, along with our research community allies, we are raising our voices for positive change.

Tags: breast cancer, by Ellen Stovall, cancer care, Cancer Survivorship, care planning, clinical guidelines, Ellen Stovall, ePatient, Patient Navigation, quality
Share this entry
  • Share on Facebook
  • Share on Twitter
https://canceradvocacy.org/wp-content/uploads/2014/06/FacebookProfile3.png 280 280 actualize https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png actualize2015-06-07 14:06:042020-11-05 08:20:53Reflections on Cancer Survivors Day: Managing Survivorship for a Lifetime
You might also like
NCCS Starburst Thumbnail New Rule Announced by HHS Secretary Kathleen Sebelius Aims to Empower Patients
Plans for Improving Cancer Survivorship Care The American Society of Clinical Oncology (ASCO)’s Plans for Improving Cancer Survivorship Care
NCCS Starburst Thumbnail WCOE: New CMS Oncology Care Model Offers Hope, End of Life Planning, and ACA Questions Answered
NCCS Starburst 250px What Caught Our Eye: Medicaid Coverage Limits; Cancer Care Cost Communication; Stanford Care Planning Study; Drug Pricing; and More
NCCS Starburst Thumbnail WCOE: How Chemo is Given, PCORI Hosts Twitter Chat About Cancer Side Effects, “Good Cancer,” How Mammography is Both Helping and Hurting, and Lung Cancer Incidence Increases in Never-Smokers
NCCS Starburst Thumbnail WCOE: Planning for Hospice, Difficult Conversations, and Second Opinions
AARP Magazine, My Patient, My Teacher Dr. Nancy Snyderman’s “My Patient, My Teacher”
NCCS Starburst 250px What Caught Our Eye: Cassidy-Graham Repeal Plan; Bipartisan ACA Hearings; Financial Issues for Childhood Survivors; IBM’s Watson Not Living Up to Expectations; and More

Latest News

HHS Humphrey bldg 1200

NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care

December 22, 2020
The National Coalition for Cancer Survivorship (NCCS) joined other member organizations…
Read more
https://canceradvocacy.org/wp-content/uploads/2017/10/HHS-Humphrey-bldg-1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-22 20:27:262021-01-04 21:38:15NCCS, Cancer Groups Urge CMS to Withdraw Most Favored Nation (MFN) Medicare Part B Rule That Will Harm Patients and Reduce Access to Care
NCCS Letter to HHS

NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients

December 9, 2020
The National Coalition for Cancer Survivorship (NCCS) recently submitted comments…
Read more
https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200-1030x515-1.jpg 515 1030 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-09 17:30:502020-12-10 08:22:55NCCS Letter to HHS: Proposed Regulatory Review Rule Would Create Unnecessary Uncertainty for Patients
HHS Humphrey bldg 1200

NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

December 3, 2020
The National Coalition for Cancer Survivorship (NCCS) opposes the Most Favored Nation…
Read more
https://canceradvocacy.org/wp-content/uploads/HHS-Humphrey-bldg-1200.jpg 600 1200 NCCS Staff https://canceradvocacy.org/wp-content/uploads/2020/06/NCCA-Logo.png NCCS Staff2020-12-03 21:26:462020-12-03 21:28:06NCCS Opposes Most Favored Nation (MFN) Rule: New Medicare Part B Drug Payment Model Will Harm Patients

Take Action

Stovall Award

The Ellen L. Stovall Award for Innovation in Patient-Centered Cancer Care is a unique opportunity for patients and survivors to recognize pioneers who are transforming the cancer care system.

Join CPAT

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.

Share Your Story

NCCS represents the millions of Americans who share a common experience – the survivorship experience – living with, through and beyond a cancer diagnosis.

STAY CONNECTED

Together we can improve cancer care for survivors! Sign up to be the first to know about cancer policy issues and ways to take action

  • About
    • Our Mission
    • Our History
    • Our Leadership
      • Policy Advisors
    • Employment
    • Partnerships
    • Financial Information
  • Policy
    • Quality Cancer Care
    • Access to Care
    • Health Equity
    • Redefining Functional Status (RFS)
    • 2020 State of Cancer Survivorship Survey
    • Cancer Care Planning and Communications Act (CCPCA)
  • Get Involved
    • What is Advocacy?
    • Cancer Policy and Advocacy Team (CPAT)
    • Elevating Survivorship
    • Survivor Stories
    • Cancerversary
    • State Based Cancer Advocacy
  • Resources
    • Survivorship Checklist
    • Cancer Survival Toolbox
    • Telehealth
    • Publications
      • Talking With Your Doctor
      • Self Advocacy
      • Employment Rights
      • Remaining Hopeful
    • Taking Charge of Your Care
    • Care Planning for Cancer Survivors
    • Tools For Care Providers
    • COVID-19 Resources for Cancer Survivors
    • Order Our Resources
  • News
    • Cancer Convos Podcast
  • Events
    • Ellen L. Stovall Award
      • 2020 Stovall Awards
      • Honorees
      • Sponsors
      • Committees
      • Reception
      • Nominations
    • Cancer Policy Roundtable
      • Fall 2020 Cancer Policy Roundtable
      • Spring 2020 Cancer Policy Roundtable
    • Cancer Policy and Advocacy Team (CPAT) Symposium 2020
    • Webinars
  • Contact Us

National Coalition for Cancer Survivorship
8455 Colesville Road  |  Suite 930  |  Silver Spring, MD 20910
877-NCCS-YES  |  info@canceradvocacy.org
Privacy Policy  |  Terms and Conditions

Copyright © 1995-2021 by the National Coalition for Cancer Survivorship
National Coalition for Cancer Survivorship, NCCS, Cancer Survival Toolbox, and related Logos are registered in the United States as trademarks of the National Coalition for Cancer Survivorship.

WCOE: Precision/Gene-Targeting Medicine Study, Surgery and Early-Stage Breast... NCCS Starburst Thumbnail 20years NCCS CEO Shelley Fuld Nasso Introduces the Sixth Principle of the Imperatives...
Scroll to top

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