Living with hematologic cancer: Recommendations, solutions

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Patients with hematologic cancers such as leukemia, lymphoma, and multiple myeloma are living longer than ever. The survival rate of patients with most hematologic cancers has doubled since 1974, and these once-terminal diagnoses are now chronic health conditions. This article reviews the care of patients with hematologic cancers, including those previously treated for childhood, adolescent, and young-adult cancers, discusses the role of primary care in a multidisciplinary team approach, and reviews innovative ways to deliver needed care.


  • The definition of survivorship is different in patients with hematologic cancer than in patients with solid tumors, as treatment is often ongoing and lacks a clear stopping point.
  • Routine health maintenance is especially important for patients with hematologic cancers, who face a heightened risk of secondary cancers and other conditions.
  • Survivorship plans can improve communication between the primary care provider, patient, and oncology team.
  • Physicians should emphasize the importance of a healthy lifestyle and routine health maintenance for their patients who are cancer survivors.



Adults with leukemia, lymphoma, multiple myeloma, and other hematologic cancers are living longer, and more than 1.2 million patients with these cancers are alive in the United States.1 Most adults with nonpediatric cancers are diagnosed in the fifth to seventh decade, and many now survive more than 5 years. The survival rate of patients with most hematologic cancers has doubled since 1974, transforming once-terminal diagnoses into chronic conditions. According to one estimate, there will be 18 million cancer survivors (all types of cancer) by 2022, and nearly 2 million of these will be survivors of hematologic cancers.2

Although survivors of hematologic cancers are at risk of complications of their cancer treatment, they often do not receive routine health maintenance and see their primary care providers only for acute issues.

Primary care providers can play a major role in monitoring the health of hematologic cancer survivors. This requires staying up-to-date on diagnosis, management, and surveillance in this group and being able to address their survivorship issues.3

In this article, we focus on survivorship considerations in patients with previously treated hematologic cancers, including childhood, adolescent, and young-adult cancers. We discuss the role of primary care in the multidisciplinary approach to the continuing care of these patients, and we review innovative technologic solutions to the challenges of delivering care to this group.


The definition of cancer survivorship has changed in the last decade, particularly with hematologic cancers.4

Survivorship was once considered the time after the patient successfully completed cancer treatment. But most patients with hematologic cancers will likely need to continue treatment until they die, with essentially unpredictable and intermittent periods of remission and relapse. Advances in cancer treatment and supportive care have led to longer life. Thus, a commonly recognized definition of survivorship begins at diagnosis rather than later in the disease course and continues through the balance of the patient’s life.5

The survivorship care plan

In 2005, the Institute of Medicine released a report6 calling attention to cancer survivors and their special needs. At that time, a growing number of patients were not returning to their primary care physicians to receive health maintenance after completing their cancer treatment. A proposed solution was for the oncologist to develop a personalized survivorship care plan, which would help the patient understand the treatments received, the importance of health maintenance, and the need for follow-up surveillance.5

The survivorship care plan was originally intended for patients who had completed their cancer treatment. But patients with hematologic cancers tend to need lifelong treatment. Nevertheless, major organizations such as the American Society of Hematology and the American Society of Clinical Oncology consider a survivorship care plan an essential part of cancer care for all patients and not just those with solid tumors.7 The plan should consist of a written treatment summary and recommendations for follow-up care.


Hematologic cancers and their treatment put patients at risk of many complications, including endocrinopathies, such as hypothyroidism or diabetes secondary to chronic steroid and immunosuppressant use, and cardiovascular events, such as congestive heart failure and stroke due to high-dose chemotherapy. Survivors are also at risk of secondary cancers and recurrence of the primary cancer.8–15

Despite the gravity of a cancer diagnosis, cancer patients do not always adhere to a healthy lifestyle. A survey of over 400,000 cancer survivors found that 15% were current cigarette smokers, 27.5% were obese, and 31.5% had not engaged in physical activity during the previous 30 days.16


Many hematologic oncology practices include not only medical oncologists but also ancillary team members such as nurse practitioners, nurse specialists, physician assistants, registered nurses, and in some cases a social worker or nutritionist. Patients with hematologic cancers often rely on this team for most of their care while undergoing cancer treatment.

Depending on the type of cancer, and especially after a period of stable disease or remission, some patients transition away from the oncology team, particularly if they live far away, and receive care from their local primary care clinician.

Although the Institute for Medicine intended the survivorship care plan6 to be a patient-focused tool, primary care providers can benefit from it too. In survey of oncologists and primary care providers in the United States,17 49% of the 1,130 oncologists said they almost always provided care plans to patients, and 85% perceived a greater benefit for primary care providers to have these plans than for cancer survivors. However, only 13% of the 1,120 primary care providers surveyed said they consistently received a care plan from the oncologist. The study suggests that oncologists should make a better effort to share these plans with primary care providers to enhance the coordination of care.


Although personalized survivorship care plans are not routinely used in patients with blood cancers,18 they are as important in hematologic cancer survivors as in patients with solid tumors.

The plan should consist of a treatment summary and information on essential components of a healthy lifestyle and should take into consideration coordination of care among primary and other providers, health maintenance recommendations, information on early detection and screening, and psychosocial welfare. Guidance on preventive screening for physical, financial, and psychosocial well-being should be generated by the oncology team or primary care provider and can be helpful to patients and caregivers as they navigate the healthcare system. (See for a sample survivorship care plan.)

Although patients with hematologic cancer often have a highly variable course with multiple periods of remission and relapse, the survivorship care plan and treatment summary are essential components of their ongoing care.

Self-management of chronic illness refers to daily activities to keep the illness under control, minimize its impact on physical health and function, and help the patient cope with the psychosocial sequelae of the illness.19 Empowering patients and their caregivers to take control of their health is an essential component of survivorship care. Patients and caregivers can be valuable partners to primary care providers and the oncology team in ongoing care to ensure proper testing and monitoring for secondary illnesses.

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