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Reflections on Cancer Survivors Day: Managing Survivorship for a Lifetime

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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.

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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.

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.

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WCOE: Precision/Gene-Targeting Medicine Study, Surgery and Early-Stage Breast Carcinoma, Other Updates

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What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

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WCOE: NCCS and Partners at #BreakawayfromCancer, the Reality of Living with Stage 4, and Cost-Conscious Care

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What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

 

 

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Revisiting the Fifth Principle of the Imperatives for Quality Cancer Care

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This month, as part of the 20 Years Later blog series, we are revisiting the fifth principle of the Imperatives for Quality Cancer Care: Access, Advocacy, and Accountability. This principle states: “People with cancer should be provided a range of benefits by all health care plans that includes primary and secondary prevention, early detection, initial treatment, supportive therapies to manage pain, nausea, fatigue and infections, long-term follow up, psychosocial services, palliative care, hospice care, and bereavement counseling.”

We will consider the components of care and assess the availability in today’s health care plans of the following:

  • Primary and Secondary Prevention
  • Supportive Care (psychosocial)

Primary and Secondary Prevention

Primary and secondary preventative measures are actions and interventions designed to prevent cancer from occurring in the first place, or to identify the disease at the earliest stages, with the goal of reducing the impact of the disease.

20 Years Later

In 2015, we’re revisiting the influential “Imperatives for Quality Cancer Care” publication. Read more posts from our “20 Years Later” series.

Since 1991, NCCS has appeared before the Senate and House Committees on Appropriations for the National Institutes of Health to testify on behalf of specific requests for increased research funding to identify the causes of cancer, as well as issues related to diagnosis, prevention, and continued care for cancer patients and their families. An important step toward increasing access to preventive care is the 2010 Affordable Care Act (ACA), which requires that all plans purchased through the Marketplace and some others cover a variety of free preventive services. These include annual wellness visits, cervical and colorectal cancer screening, diet, obesity, and tobacco use screening, and immunization vaccines—all of which are provided without cost-sharing obligations.

Cancer screening is now a complicated process that includes a range of procedures from imaging, to physical exams, to bloodwork and, most recently, to genetic testing. We have closely monitored the Food and Drug Administration (FDA) efforts to develop a strong regulatory framework for Laboratory Developed Tests (LDTs)—sometimes used to diagnose genetic causes of cancer—to encourage more certainty and predictability. We believe the thoughtful and cautious oversight of these tests can reduce harm to patients. If these tests do not accurately diagnose cancer or properly identify a genetic mutation, a patient could be improperly treated, receiving either unnecessary treatment or no treatment at all.

Additionally, there is much to be determined with regards to defining the risks and benefits of screening. For example, mammography and breast cancer screening remains a highly contested issue, with concerns that women are often overdiagnosed, or overtreated for cancers that will not cause harm. Proponents argue that early detection unequivocally saves lives. The discourse surrounding this and other screening issues will continue to change as new technologies and findings emerge, and will require continuous monitoring by patient advocates to ensure that the consumers of these procedures are receiving the right care at the right time.

While progress is being made in making preventive services accessible, responsibility still falls on the patients. Individuals putting off doctors visits, or opting out of screenings altogether, highlight an issue in public health – individual responsibility and consumer awareness. NCCS and other organizations are dedicated to ensuring patients have access to preventive services, that screening guidelines are evidence-based, and that patients are informed of risks and benefits associated with screening.

Supportive Care (psychosocial)

Cancer patients and physicians are becoming more aware of supportive care and psychosocial needs as an integral part of quality cancer care. This includes the emotional stress of living with a diagnosis of cancer and its treatment, fear of recurrence, anxiety about financial obligations, and the distress imposed on patients and their families of living with the day-to-day physical problems cancer may cause. Assessing the psychosocial concerns and coping mechanisms of patients is of increasing interest to researchers and patient groups who believe this component of care has been long subject to neglect.

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The supporting documents for the Cancer Survival Toolbox include distress screening resources.

NCCS and other organizations have incorporated screening and psychosocial support tools into patient resources. The support documents for the Cancer Survival Toolbox© include the National Comprehensive Cancer Network (NCCN) Guidelines®, a distress management tool that addresses practical, family, emotional, and physical problems, as well as spiritual and religious concerns. Additionally, the Teamwork publication and Pocket Cancer Care Guide iPhone mobile app include a series of questions designed to help facilitate conversations between patients and care providers.

We know that supportive care, including psychosocial care and late and long-term effects are critical to ensuring positive patient outcomes. Survivors and their families should also receive palliative and hospice care when the time is right, and bereavement counseling if necessary. We believe that all cancer patients should receive a cancer care plan to guide their treatment and help coordinate their care. For this reason, we support the Oncology Care Model (OCM), which would require practices to document a care plan that covers diagnosis, treatment goals, plans of treatment, quality of life considerations, care coordination, and psychosocial concerns.

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Guest Post: Multidisciplinary Care Is the Hallmark of High Quality Care—So Why Doesn’t Everyone Get It?

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Therese M. Mulvey, MD, FASCO, is the Physician-in-Chief at Southcoast Centers for Cancer Care, Massachusetts.

Therese M. Mulvey, MD, FASCO, is the Physician-in-Chief at Southcoast Centers for Cancer Care, Massachusetts.

The fourth principle in the Imperatives for Quality Cancer Care states, “All people diagnosed with cancer should have access to and coverage for services provided by a multidisciplinary team of care providers across the full continuum of care. Health care plans should be held accountable for timely referral to appropriate specialists when symptoms of cancer or its recurrence may be present.”

Amy is a 49 year old working mother of two high school children, married to Joe,  a general contractor. Amy was diagnosed with breast cancer six weeks ago. She and her husband are worried about the treatments prescribed for her care and present for a second opinion regarding her care. They express concerns about how long it is taking to get “everything done,” the financial impact of a prolonged time away from work in a two income household and the impact on their children who have not been told of the diagnosis yet.

As a medical oncologist, I know that six weeks from diagnosis of cancer and not on any specific therapy is unfortunately the norm, not the exception. Like most women diagnosed with breast cancer, Amy went to her community hospital radiology facility for a mammogram, the kind one gets every year for screening. Her PCP ordered the test and when the results were abnormal the radiology department called her PCP to get orders for a diagnostic mammogram and ultrasound, the tests that are done once something suspicious is seen on the screening study. The diagnostic mammograms were performed seven days after the screening mammogram and they confirmed a lesion that needed biopsy. The biopsy was performed using ultrasound guidance five days after the diagnostic test. Amy learned from her PCP a week after the biopsy that she had breast cancer. Her PCP would refer her to a colleague, a local surgeon who would see her the next day.

The surgeon advised a lumpectomy and sentinel node biopsy of her axilla and scheduled the surgery for two weeks from the visit date. She was reassured that two weeks was a reasonable time to wait due to operating room schedules and the disease itself.  A week after surgery Amy and her husband were seen back in the surgeon’s office to learn that her tumor was not completely removed, she had positive margins and the lymph node was positive for cancer. She needed more surgery.

The second surgery would be scheduled in three weeks, as she needed time to recover from the first.  The second surgery also left her with positive margins, and she learned that her tumor was 2.5 cm in size, three lymph nodes were positive for cancer, her tumor was estrogen receptor negative, and HER2 negative. She was scheduled to meet a medical oncologist who would see her in two days. She was told that she needed chemotherapy, radiation consult, CT scans, heart tests, a portacath device and labs—all before any therapy was started.

20 Years Later

Read more posts from our “20 Years Later” series.

Had Amy been seen in a multidisciplinary clinic or presented at a tumor board where the surgeon, medical oncologist, radiation oncologist, social worker and patient navigator had been present, a very different plan may have been constructed and the time from diagnosis to systemic therapy could have been significantly shorter.  Amy and her family would have had a road map of her care, anticipating the amount of time off needed, side effects anticipated, and multiple care providers involved in her decision making.

Amy may have benefited from up-front chemotherapy for her cancer before surgery. She would have had the ability to meet with a radiation oncologist to explain the role for radiation based on her surgical choice and the survival advantage one achieves if there are positive lymph nodes regardless of the surgery done. A genetic counselor would have discussed the benefits and risks of genetic testing, and the navigator would have coordinated visits, staging tests and visits to minimally disrupt the family’s life. The social worker could have assessed the financial impact of Amy’s diagnosis on her family and assisted with coping with a diagnosis of cancer for her, her children and husband.

Multidisciplinary care is the hallmark of high quality care for the reasons outlined above. So why doesn’t everyone get it? Multidisciplinary clinics are by their very nature inefficient, and they are poorly reimbursed. A surgeon or medical oncologist who can routinely see 10-15 patients in an afternoon can see 5-8 patients in a multidisciplinary clinic. Each physician may bill separately, but often a global bill is generated to support the salaries of the nurse navigator, social worker, rehab specialist, etc.  A stipend is then provided to the physician. By its nature, the cognitive work done in such a setting is not recognized by payers, but the benefit to the patient is enormous and obvious. The barriers to such care in a rural setting are even greater. Some community cancer programs utilize technology to overcome distance and convenience. Regardless of the modality used, multidisciplinary care is a necessary component of high quality and coordinated care for every patient diagnosed with cancer.

“Multidisciplinary care is just that, many disciplines coming together.”

So what should a person ask when first diagnosed with cancer? First, ask, “Who will navigate my care?” If the answer is the physician, that is not their primary job. Physicians see people with problems, solve the problem, and move on. Primary care providers do a much better job at care coordination than specialists, but cancer is a complex and changing environment that a PCP cannot negotiate without help. Navigators—either lay persons or nurses—understand the disease, know the specialists who need to care for a patient with a specific diagnosis, and have access to schedules and offices to make it all happen in a coordinated fashion. Why see a surgeon first if chemotherapy is your best therapy up front? Likewise, why see the radiation oncologist if you choose surgery that eliminates the need for radiation, as often occurs in breast cancer. Worse, why choose a mastectomy if the patient wishes to avoid the six weeks of radiation only to learn that radiation is indicated because of the positive lymph nodes. Each specialist brings their expertise to the table, real or virtual, in multidisciplinary care. A coordinated approach with a dedicated navigator avoids misunderstandings, duplication of tests, and multiple visits and days off from work. It alleviates the anxiety of “not knowing what comes next” from an already life-altering situation.

Second, ask if the specialist you are seeing works with a select group of providers regarding your type of cancer on a regular basis. How many cases of your type of cancer do they see? A physician who makes a commitment to multidisciplinary care does so for one or two diseases, not everything. There is too much to know and too little time to know it all to do everything well. A generalist can do just fine so long as they coordinate with the multidisciplinary team, follow established guidelines and are willing to be measured by their cancer program for compliance to established standards.

Third, ask if the cancer program you are going to adheres to established guidelines and which ones—are they accredited by the American College of Surgeons, the National Accreditation Program for Breast Centers, etc? These credentialing bodies affirm that your care will be coordinated in a multidisciplinary fashion.

Last, ask if the navigator has the ability to coordinate your care from diagnosis through your disease continuum.  Are there rehabilitation services available, survivorship services, support groups, counseling for family members, financial counselors, etc?

Multidisciplinary care is just that, many disciplines coming together. Care of the patient is not just about THE procedure, it is about the whole patient. I often say to young physicians that although I give chemotherapy, the patient gets it all, surgery, radiation, etc, and life after cancer. We have to be cognizant of that and provide those services for every patient, regardless of their zip code.

An ASCO member since 2001, Dr. Mulvey has served on the Quality of Care Committee, Value in Cancer Care Task Force, State Affiliate Council, Cancer Education Committee, and Best of ASCO Planning Committee. She has served as Chair of the Clinical Practice Committee and on the Editorial Boards of the Journal of Clinical Oncology and Journal of Oncology Practice.Dr. Mulvey was honored with the 2009 Goodspeed Chair Award and Lecture for Quality Care from Southcoast Hospitals Group. She has served on the Cancer Quality Alliance and as Chair of the Oncology Carrier Advisory Committee. In addition to serving on the Boards of Directors of numerous Massachusetts hospitals, Dr. Mulvey was a volunteer with the Bridge Over Troubled Waters Medical Van serving homeless youth. Dr. Mulvey received her medical degree from Tufts University School of Medicine, and completed her internship, residency, and fellowship at New England Medical Center. She completed a research and clinical fellowship at Massachusetts General Hospital and took an intensive course in cancer genetics and risk assessment at City of Hope Cancer Center. She has previously worked as a physician at other community practices in Massachusetts, including East Boston Neighborhood Health Center and Commonwealth Hematology Oncology, where she also served as President and CEO. She has worked as an instructor at Harvard Medical School and as an Assistant Professor at Tufts University School of Medicine. The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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Marlene King Discusses Living with Metastatic Breast Cancer and Collaborative Decision-Making with Her Oncologist

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Marlene King was diagnosed with Ductal Carcinoma in Situ (DCIS) in 2008 at the age of 48, and she elected to have a lumpectomy, chemotherapy and radiation.  After treatments the cancer seemed to be in remission.   In 2011, the cancer returned and she decided it would be best to have to a double mastectomy and reconstructive surgery. However, one year later in 2012, Marlene was diagnosed with stage 4 metastatic breast cancer; the prognosis for life expectancy 4-36 months.   During this time, Marlene decided to connect with METAvivor and overtime made it her priority to be an activist through the organization in raising awareness about the facts about metastatic (stage 4) breast cancer. She is currently a member of the METAvivor Board of Directors. METAvivor exists to sustain hope for those living with metastatic breast cancer.

How Do You Approach Shared Decision-Making with Your Oncologist?

Marlene recently joined us as a panelist at the NCCS Cancer Policy Roundtable, where she shared her perspective on how cancer patients and oncology professionals can collaborate in decision-making that will improve care planning and coordination. In this interview, Marlene discusses her relationship with her oncologist, which started in 2008. In her experience, decision-making is a shared process that includes herself, her husband, and her oncologist.

The views & opinions expressed in any guest post featured on our site are those of the guest author and do not necessarily reflect the opinions & views of the National Coalition for Cancer Survivorship. Read our blog and comment policies here.

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WCOE: Pace of FDA Drug Approvals, Redesigning Insurance Exchanges, Shared Decision Making, and Thoughts on Data Collection

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What Caught Our Eye (WCOE) Each week, we recap the cancer policy articles, studies, and stories that caught our attention.

 

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WCOE: Obama takes on Precision Medicine, Palliative Care ≠ Hospice, Quantity and Quality of Life, CLRC News, Medicare Payment Reform, and Breast Cancer Patient Communication

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What Caught Our Eye (WCOE) Each week, we take a closer look at the cancer policy articles, studies, and stories that caught our attention.

 

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WCOE: Warlike Metaphors, a Report out of the San Antonio Breast Cancer Symposium, Discussing Costs, and Other News

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What Caught Our Eye (WCOE) Each week, we take a closer look at the cancer policy articles, studies, and stories that caught our attention.

The stories that caught our eye this week included an article that points out the use of warlike metaphors to describe one’s experience of cancer as one that may prevent patients from seeking aggressive treatment.  Prior research has concluded that warlike metaphors may lead one to feel like a failure or guilty that they didn’t fight hard enough.

Also, in Forbes Magazine was a report out of the San Antonio Breast Cancer Symposium that unveiled new evidence regarding a tool that may help inform treatment decision-making for people with low-grade breast cancer.  In addition to clinical information, the information may lead to lower costs and risks associated with breast cancer screening by using the pathology tools such as Oncotype Dx.

This What Caught Our Eye (WCOE) post will be our last one of 2014. We’ve received a tremendously positive response, and have been reflecting on ways to connect our readers with more relevant cancer policy news in the coming year. NCCS is active on Twitter, and monitors the platform daily for the latest articles and news related to cancer policy. We’re transitioning to a new WCOE platform that will better connect our readers with the advocates and stories that impact cancer policy. When we return on January 9th, WCOE will feature the many stories that resonated with us on social media. We’re offering a preview of this format in this post.

We’ll continue to analyze and respond in-depth to important cancer policy news in full-length blog posts, and to ensure that the Cancer Policy Matters blog remains a powerful resource for policy makers, health care experts, patient advocates, and all individuals interested in cancer policy issues in 2015.

 

 

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WCOE: Cost of Cancer Care, Adopting a Shorter Course of Treatment for Some Breast Cancer Patients, and Lung Cancer Screening

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What Caught Our Eye (WCOE) Each week, we take a closer look at the cancer policy articles, studies, and stories that caught our attention.
In “The Punishing Cost of Cancer Care,” Dr. Mikkael Sekeres describes the difficult conversations he has with patients regarding the cost of cancer treatments and how reviewing the economic risks of treatment is now a standard part of his informed consent process. In the vignette he provides, one patient considers whether the cost of treatment outweighs the potential benefits. It is not rare for a patient to have to decide between incurring crippling debt or improving the quality of their disease. We commend Sekeres for integrating these conversations into his practices, however, having these conversations is only half of the battle. We must make cancer treatment affordable and accessible to all.

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Read More “WCOE” Posts

Several outlets such as NPR, Vox, Time, and NBC News reported on newly released findings from the Journal of the American Medical Association that state about two thirds of early stage breast cancer patients may be getting more radiation treatment than needed and radiology oncologists are not utilizing the new course of treatment that could take less time and cost less for many women. The research suggests that, among other factors, one reason for the lack of use is the financial incentives associated with the longer and more invasive course of treatment.

Published this week in The New York Times ‘Well Blog,’ Jane Brody thoughtfully examines in “For Lung Cancer Screening, a Small Dose of Hope,” the pros and cons of low-dose computed tomography (LDCT) lung cancer screening on the heels of the CMS decision to provide free screening to many Medicare insured Americans. Brody cites research that LDCT could prevent three lung cancer deaths for every 1,000 people screened, and given the millions of people at risk, that could translate into many lives saved. However, she notes with Dr. Peter Bach’s consultation, that for the benefits demonstrated in the trial to be realized, screening would have to be limited to people at high risk of developing lung cancer and the most common risk of the screening is a false-postive result as up to half of lung nodules seen on LDCT turn out not to be cancer.

 

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