U.S. Senators Ben Cardin (D-MD) and Amy Klobuchar (D-MN) and U.S. Representatives Debbie Wasserman Schultz (D-FL), Brian Fitzpatrick (R-PA), and Mark DeSaulnier (D-CA) introduced the Comprehensive Cancer Survivorship Act in December 2022 to address gaps in survivorship care and formulate standards to improve quality of cancer care and navigation needs of survivors.

Although they’ve conquered cancer, survivors may develop late or long-term physical, psychosocial, practical, or spiritual effects from the disease or its treatment. For example, patients with breast cancer who have completed surgery, radiation, or chemotherapy should be monitored for recurrence, lymphedema, osteoporosis, and cardiac, hormone-related, and sexual issues.

Coordinating survivorship care plans is an integral part of cancer care. When the Froedtert and Medical College of Wisconsin Cancer Network experienced challenges in implementing survivorship care plans, it created a brand-new medical role—survivorship data coordinator—to “initiate case findings for eligible patients, track patients completing treatment, notify physicians and advanced practice providers to populate the survivorship care plan, and schedule survivorship care plan appointments.”

Survivors need support to resume a high-quality, healthy “new normal” life after they complete their treatment. The services of a cancer survivorship clinic or program may help them manage the physical and emotional implications involved with ongoing care.

Older cancer survivors who have lower levels of education, are uninsured, or are widowed, divorced, or separated are less likely to receive survivorship care plans (SCPs), researchers found. They reported the results of their study in Supportive Care in Cancer.

Adolescent and young adults (AYAs)—those diagnosed between the ages of 15 and 39—comprise about 5% of all annual cancer diagnoses. The population has unique challenges that must be considered as part of patient-centered survivorship care planning.

Bladder cancer is the sixth most common cancer in the United States, with an estimated 83,730 adult diagnoses in 2021. Smoking is the greatest risk factor (47% of all cases occur in smokers), followed by advancing age and sex (assigned males are four times more likely to develop bladder cancer than those assigned female). The incidence rate in White people is double that of Black people, but Black people are twice as likely to die from the disease.

In 2021, approximately 44,000 people will be diagnosed with thyroid cancer, most commonly younger patients and assigned females at birth.

As Americans reduce tobacco use and treatment and diagnosis advance, lung cancer survivorship rates are improving; however, it still remains the second most common type of cancer. The growing population needs appropriate survivorship care.

Historically, ovarian cancer is often diagnosed at advanced stages because of vague symptoms and presentation, but with new advancements in diagnosis and treatment options, patients with the disease are living longer than ever.

As the number of cancer survivors continues to grow in the United States, so too does the need for cancer survivorship programs. Oncology advanced practice RNs (APRNs) are essential team members as institutions develop and deliver comprehensive and holistic programs to meet survivors’ needs.

Prostate cancer is the most common cancer among those assigned male at birth, with one in eight diagnosed during their lifetime. But with five-year survival rates of 90%, it’s also one of the most successful cancers to treat, making survivorship care even more important.

Breast, prostate, colorectal, and melanoma are the most common primary cancer sites among 58% of survivors. Advancements in immunotherapy and targeted therapies have significantly increased treatment options for a disease that once had very limited treatment options, markedly improving overall five-year survival rates for patients with melanoma. Yet survival rates vary depending on extent of disease (local versus metastatic) and ethnic minority disparities. Although the overall (all stages combined) five-year survival rate for White patients with melanoma is 93%, the rate drops to 87% for Hispanics and to just 23% for those with distant melanoma. 

Despite accounting for only 3% of all cancer survivors, patients with head and neck cancers often require significant support and survivorship care. And oncology nurses can expect survivorship to grow with recent improvements in prognosis and treatment options, such as with reductions in human papillomavirus-related oropharyngeal cancers, which tend to affect young people and offer improved long-term survival rates.

As the third most common cancer among both men and women, colorectal cancer is a reality for the more than 1 million people in the United States who are living with or have a history of the disease. Advancements in early detection and treatment have improved outcomes, but many survivors experience late and long-term side effects that may vary in duration, intensity, and impact on their quality of life. Clinicians must tailor each survivorship care plan for a patient’s cancer type, stage, treatment received, psychosocial implications, and side effects or toxicities. Studies have shown that experiencing long-term side effects and symptoms can reduce survivors’ quality of life. 

Marianne, an oncology nurse navigator, is preparing a cancer treatment summary and survivorship care plan for Sylvia, who finished breast cancer treatment six weeks ago. Sylvia was treated with neoadjuvant therapy followed by mastectomy, reconstruction, and radiation. Her tumor was characterized as multifocal invasive ductal carcinoma, grade 2, estrogen and progesterone positive, and HER2/neu negative. Sylvia has no family history of breast cancer. Marianne notices that the oncologist recorded Sylvia’s cancer as a stage IB. Marianne wonders if the stage was determined before or after chemotherapy and surgery.

As treatments have advanced and patients and providers have more options, cure and survivorship rates for lymphomas are improving: five-year survival rates for Hodgkin and non-Hodgkin lymphoma are 86% and 71%, respectively. Despite good results from treatment, research indicates that lymphoma survivors carry a significant amount of late and chronic effects. Even in a complete remission, late effects of treatment present a burden for patients' physical and psychosocial well-being.

More than 3.5 million people in the United States are living with a breast cancer diagnosis. Despite their large number, patients often report they do not receive appropriate follow-up care after completing treatment—and the situation is worsening, with pandemic-related delays in care affecting approximately half of breast cancer survivors.

In part thanks to advancements in both cancer treatment and supportive care, the number of cancer survivors is expected to reach 22 million by 2030. Adolescent and young adult (AYA) patients aged 15–39 constitute only 5% of new cancer diagnoses but have an 85% relative five-year survival rate. They represent a significant portion of all current and future cancer survivors and have unique needs, including reaching developmental milestones, coping with disruptions in personal and professional relationships, and encountering potential difficulties in family planning.  

Most cancer diagnoses in the United States occur later in life, in patients older than 60 years, although most of the common pediatric diagnoses occur in those younger than 10 years. Pediatric and adult patients receive similar cancer therapies. The goal is to kill rapidly dividing cancer cells. Unfortunately, most of a child’s cells also undergo rapid division, and treatment can damage healthy tissue. Therefore, treatment that cures pediatric cancer can also cause long-term survivorship issues.

Jamie is completing her last cycle of carboplatin and paclitaxel for stage I ovarian cancer. The oncology infusion nurse notices that Jamie appears withdrawn and nervous, so he takes time to ask her how she is feeling about completing treatment. Jamie responds, “I feel as frightened about finishing treatment as I did when I was diagnosed with cancer.” She also shares that she doesn’t want to ring the cancer center’s bell to ceremoniously signify the end of her treatment because she doesn’t want to “jinx it.”

Healthcare providers need to address three priority areas to improve outcomes for cancer survivors and support caregivers for patients with cancer, according to findings from an evidence review published in CA: A Cancer Journal for Clinicians.

Incorporating survivorship care plans into a hospital’s electronic medical records (EMRs) can be a tremendous aid for oncology nurses supporting their patients entering survivorship. Using the National Comprehensive Cancer Network treatment guidelines as a template for care, the oncology team can prepare a patient’s medical record with the necessary individualized information. 

More than a decade ago, the National Academy of Medicine first proposed that “all patients should be given a comprehensive summary and a clear explanation of the details of their cancer therapy as well as recommendations for necessary follow-up.” This seemingly simple task has proved difficult to deliver in many cancer care settings.

With more than 15.5 million Americans living beyond cancer, it’s no surprise that more attention is being paid to survivorship than ever before. Once treatment ends, patients can be thrown back into a world after cancer with little or no attention paid to their concerns about recurrence, late effects from treatment, how to follow up with their future care, and a great many more unknowns.