Shelley Fuld Nasso

Sarah Cohn knows how to advocate for herself. In February 2014, at the age of 30, Cohn received a diagnosis of acute promyelocytic leukemia, a rare form of leukemia that required her to be hospitalized for over a month for intensive treatment. Inspired by a caring, compassionate nurse, she learned to educate herself, ask questions and be her own advocate.

Through her experience, Cohn discovered the deficiencies in cancer survivorship care. Oncologists focus on treatment but not always on the long-term side effects of those treatments. Many primary care physicians want to help their survivor patients of cancer with chronic health issues, but they often lack the necessary training to do so.

Most of Cohn’s survivorship care is now with the primary care physician she has had since she was 18 years old.

“I only see my oncologist once a year now, which is exciting but also a little bit scary to not have that constant check-in,” she says. “My primary care physician was always an advocate for me, but she’s not trained in taking care of cancer survivors. She’s really used to dealing with patients who have more common comorbidities like high blood pressure and diabetes. She’s not used to a 30-something-year-old cancer survivor dealing with these really strange side effects that she knows nothing about.”

Today, Cohn is a patient advisor for National Coalition for Cancer Survivorship’s (NCCS) Survivorship Champions, a new initiative to support clinicians and researchers, both oncology and primary care, who are interested in improving survivorship care and primary care’s role in caring for survivors of cancer. Survivorship Champions members can access resources and training materials. In addition, NCCS has created a Survivorship 101 presentation and a Survivorship Champions Grand Rounds curriculum that can be shared with interested programs and institutions, including a discussion of survivors’ needs, a survivor’s story and data from NCCS’ State of Cancer Survivorship Survey.

As treatments for cancer improve, more people are living with a history of cancer and the long-term effects of cancer treatment. With more than 17 million survivors of cancer in the United States, the oncology workforce is not sufficient to handle the acute needs of patients who are in treatment, as well as those who have completed treatment. Thus, some of the responsibility for providing survivorship care shifts from oncologists to primary care. Even survivors who require continued follow-up by their oncology team need primary care physicians who understand their cancer experience and their health needs.

For the Survivorship Champions initiative, NCCS is partnering with Dr. Ana María López, a medical oncologist at Sidney Kimmel Cancer Center – Jefferson Health. As past president of the American College of Physicians, Lopez understands the challenges primary care physicians face in their practice, as well as their desire to learn more about the needs of their patients who are survivors of cancer.

“In my career, I have seen the gaps in care that cancer patients face during treatment and as they transition to post treatment care. Cancer survivors face lifelong effects of their treatment — physically, emotionally and functionally — and they need support from their clinicians to manage their care,” she says.

As part of the launch of Survivorship Champions, NCCS interviewed a group of long-term survivors and asked them what they wanted primary care physicians to understand about caring for survivors of cancer. Several themes emerged, including the following:

People talk about a “new normal” after cancer, but many survivors say that there is no such thing. After a cancer diagnosis, their lives have been changed forever. Fear of recurrence is a significant and often debilitating concern for many survivors. And the effects of cancer treatment are long lasting.

Understand collateral damage of cancer treatment.

Cancer treatment has long-lasting effects on a survivor’s physical health, mental health and quality of life. Some treatments cause infertility, heart damage, neuropathy and other significant health effects. Survivors are not always prepared for the long-term effects, and they wish their primary care team better understood these effects of cancer treatment.

Patients and survivors of cancer see multiple doctors, and often the task of coordinating among different clinicians falls on the patient. Many survivors become strong advocates for themselves and share information among their providers, but it can be a huge burden. Communication between the oncology team and primary care physician is essential to ensure coordination of care.

A cancer diagnosis takes a huge toll on mental health. In NCCS’ 2020 State of Cancer Survivorship Survey, fatigue and mental health issues are among the most common side effects reported by patients and survivors, yet few reported that their health care teams were very helpful in addressing these concerns during treatment, and most reported their doctors did not bring up mental health during post-treatment care.

Cancer is a life-changing experience, which affects survivors’ health, finances, family, careers and mental health Survivors often take on the responsibility of managing their treatments and coordinating among multiple providers. As a result, they often know an incredible amount of information about their own health and the health care system. Meeting patients where they are and listening to their concerns are critical.

Cohn is a self-described “nonscience science geek,” so she learned how to read research studies, ask the right questions and even make suggestions to her primary care physician. But she is quick to point out that not all patients and survivors are as empowered as she is.

“There are a lot of patients and survivors who are really great advocates for themselves, but there are also patients who don’t know how to (be),” she says. “And they depend on their providers to be their advocate and (to) ask them questions because (these survivors) might not even realize that they’re dealing with survivorship issues.”

Her advice to physicians is to pay special attention to the patients who are not as able to ask questions. “You should be really focused on the people who aren’t asking you questions and who aren’t involved in their own care,” Cohn says. “Those are the ones you should be focusing on.”

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How one survivor’s journey led to her realization of what survivorship care is lacking and the importance of advocating for yourself during survivorship.

Survivorship Champions

A patient with newly diagnosed prostate cancer must decide between treatment or surveillance but is having difficulty understanding the doctor’s recommendations. A survivor of breast cancer has transitioned from active treatment but is unsure about what long-term effects to expect. A patient with lung cancer is unaware that his recommended treatment is not curative and has not yet discussed end-of-life care with doctors or family members. These are common dilemmas faced by individuals with cancer.

Recently, I asked my mother-in-law to reflect on her cancer experience. “It was a very frightening time for me,” she said. “I knew nothing about the process after a lumpectomy and removal of my lymph nodes. I was sent home with no instructions other than to visit my doctor to get results about the lymph nodes. I was in pain and miserable. I so desperately needed a plan for recovery and what to expect from my treatment.”

A key recommendation for action is that the cancer care team “should collaborate with their patients to develop a care plan that reflects their patients’ needs, values and preferences, and considers palliative care needs and psychosocial support across the cancer care continuum."

These experiences underscore the need for improved communication between patients and providers, as well as for cancer care planning—a key priority of the National Coalition for Cancer Survivorship (NCCS).

Last fall, the Institute of Medicine (IOM) released Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, a report supported by the NCCS and other leading cancer organizations. It concluded that the cancer care system is in crisis—it is not patient-centered, does not provide well-coordinated care and does not encourage evidence- based treatment decisions. With more than 1.6 million new cancer diagnoses expected this year, these gaps will impact more people than ever.

The IOM proposes a framework for quality cancer care that centers on engaged patients and emphasizes informed decision-making and deliberate planning for this difficult and often-confusing journey. A key recommendation for action is that the cancer care team “should collaborate with their patients to develop a care plan that reflects their patients’ needs, values and preferences, and considers palliative care needs and psychosocial support across the cancer care continuum.”

These are important steps toward improving the quality of care patients receive. But real change comes from reforms to the system of healthcare delivery and payment. In order to truly change clinical practice and make both treatment care planning and survivorship care planning a reality for patients, physicians and care teams must receive financial compensation for their time.

To that end, the NCCS supports the Planning Actively for Cancer Treatment (PACT) Act, legislation that would establish a Medicare service for cancer care planning and coordination. The legislation has garnered bipartisan support and the backing of 15 cancer centers and 16 patient advocacy groups. The service would encourage physicians to create a written care plan, based on shared decisions made with the patient’s active involvement. These plans can be shared with all parties involved in the patient’s treatment, helping to reduce duplication of testing and other services and ensure the patient’s wishes are known in advance.

Cancer care planning will improve patients’ experience, and, at the same time, reduce inefficiencies in the system. The experience of cancer is frightening and challenging to patients, and they should receive a clear and concise road map of their treatment and survivorship. I wish that my mother-in-law had had access to care planning. She might not have felt so lost and alone during her treatment and afterward.

—Shelley Fuld Nasso is the chief executive officer for the National Coalition for Cancer Survivorship. For more information about the PACT Act, visit 

Shelley Fuld Nasso, of the National Coalition for Cancer Survivorship, explains the importance of survivorship care.

Shelley Fuld Nasso

Survivorship Champions

Aiming to Improve Quality of Cancer Care

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