ReviewEvolution of survivorship in lymphoma, myeloma and leukemia: Metamorphosis of the field into long term follow-up care
Introduction
The number of long term cancer survivors in the United States (US) has currently exceeded 15 million with projections to surge to >20 million by the year 2026 [[1], [2], [3]]. Such increase in cancer survivors is attributable to an increased incidence of malignancy for the aging population, improved screening practices leading to earlier detection, and perhaps due to significant improvements in healthcare delivery. In our quest to cure an ever increasing number of cancer patients, it has become evident that these survivors can suffer from an array of potential late effects occurring due to acute or delayed toxicities from therapies delivered. Such late effects have physical or psychosocial consequences and can in some cases be severe, debilitating, or even life threatening.
The National Coalition for Cancer Survivorship (NCCS), in 1986, pioneered the definition of survivor as being any person diagnosed with cancer, from the time of initial diagnosis until his/her death. The National Cancer Institute (NCI) definition of a cancer survivor is somewhat similar - “an individual is considered a cancer survivor from the time of diagnosis, through the balance of his or her life. Family members, friends and caregivers are also affected by the survivorship experience and are therefore included in this definition”.
A recent review found that around 50% of patients reported one or more late effects, most commonly manifesting as fatigue, depression or pain [4]. Though the field of cancer survivorship was born in the solid cancer territory, dramatic advances in hematologic malignancies have led to increased survival, but often at a cost of increasing late complications. This has led to a progressive growth in both clinical and research aspects of survivorship in hematology. There is abundant data on survivorship aspects of hematopoietic cell transplantation (HCT), however a literature gap is identified in delineating the key survivorship aspects for hematologic malignancies in general [[5], [6], [7], [8]].
Herein, we present the literature relevant to late effects commonly seen in Hodgkin lymphoma, non-Hodgkin lymphoma, chronic leukemia and multiple myeloma. We will discuss the strengths and pitfalls of the existing models of survivorship care and conclude with expert prospective on how the field will progress.
Section snippets
Survivorship in Hodgkin lymphoma
There are approximately 9000 new cases of Hodgkin lymphoma (HL) diagnosed annually in the US amounting to 10% of all lymphomas [9]. Historically, HL was a uniformly fatal disease prior to the advent of modern combination chemotherapy and radiotherapy. Such therapy has evolved since the 1960's where it encompassed staging laparotomy with splenectomy, followed by limited or extensive field radiation. This approach evolved over time and contemporary combination chemotherapy and modern radiotherapy
Survivorship in non-Hodgkin lymphoma
Non-Hodgkin lymphoma (NHL) encompasses a heterogeneous collection of pathologies with different clinical courses, treatments and outcomes [43]. Depending on the subtype of NHL and stage of disease, the therapeutic recommendation can vary from watch and weight strategy to use of aggressive combination chemotherapy and radiotherapy. Furthermore, the protracted disease course of indolent lymphoma, and the need of multiple sequential therapies renders the risk assessment of such therapies less
Survivorship in chronic leukemia
Survival has significantly improved for chronic leukemia patients, particularly chronic myeloid leukemia (CML) where it currently stands at over 80% at 10 years following the introduction of tyrosine kinase inhibitors (TKI). As the number of leukemia survivors expands over time, understanding the issues faced by survivors is of utmost importance to design and establish long term follow up programs. These programs should adopt a flexible model to facilitate patient monitoring depending on the
Survivorship in myeloma
Globally, 154,000 cases of multiple myeloma are diagnosed annually with an upward trend in incidence [79]. Myeloma is considered to be a disease of limited life expectancy. However, dramatic advances in management particularly with novel agents, have led to an extended life expectancy beyond the first five years of diagnosis [80]. A recent epidemiologic study utilizing the SEER registry data indicated that besides an increase in life expectancy, the incidence rate of myeloma in the US has
Long term follow up & survivorship care plan
Continued advancements in cancer screening and therapeutic strategies led to a significant increase in long term cancer survivors. It is clear that these gains come with substantial costs to survivors and society as physical, financial, legal and other challenges surface to light. Patient's often feel unprepared for the potential of late toxicities and many would like to be more informed [96]. Furthermore, evidence suggests that such survivors may not receive recommended care for variety of
Future directions and concluding remarks
A number of societies have published guidelines on long term follow up and survivorship issues including the NCCN, ASCO, Children Oncology Group (COG) among others. It covers issues related to follow up for cancer recurrence, screening for late effects and some specific follow up recommendations per disease site. Similar guidelines also exist for screening and preventive practice following HCT which has been endorsed by numerous transplant societies across the globe [105]. To the authors'
Practice points
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Prevalence of late effects is high among survivors of hematologic malignancies
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The spectrum of late effects includes organ dysfunction, secondary neoplasms and psychosocial effects including financial toxicity
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The Survivorship Care Plan is a vital document that includes a comprehensive treatment summary, expected late effects as well as surveillance recommendations
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The Survivorship Care Plan is meant to improve awareness of patients and providers, improve surveillance and ultimately improve
Research agenda
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Refine incidence and impact of late effects as new therapies emerge and patient survival improves
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Examine the different models of Survivorship Care Plan delivery
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Assess how can Survivorship Care Plan delivery mitigate the magnitude of late effects burden
Conflict of interest
None of the authors declare any relevant conflicts of interest.
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