Chapter 8. Survivorship
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247 CHAPTER 8 Survivorship Many people use the term cancer survivor to refer to anyone diagnosed with cancer who is still alive. From this perspective, we are lymphoma survivors from the instant we are diagnosed with the disease (or perhaps from the moment a malignant cell first set up residence in our bodies). And I applaud anyone with the gumption to view himself or herself as a “survivor” during those first terrifying days of a cancer diagnosis. Here, however, I consider “survivors” as those of us further along in our cancer journeys: people who have survived an initial diagnosis of lymphoma and at least one course of treatment and who are now free from signs of active disease. This chapter is concerned with some of the challenges associated with long-term survival, rather than with the chaotic period of initial diagnosis through the first treatment or the difficult transition involved in completing that first treatment and returning to “posttreatment life.” This aspect of survivorship has only recently emerged as a topic of interest to the lymphoma community (survivors and physicians); this state of affairs is, in part, a tribute to the extraordinary advances in therapy that have enabled the existence of a large community of long-term survivors. And, as lymphoma survivors, we are, indeed, members of a large community: as of 2012, there were an estimated 534,950 people living in the United States following a diagnosis of NHL, and 188,590 who had received a diagnosis of Hodgkin lymphoma. A discussion of the challenges facing long-term lymphoma survivors is complicated by several issues. First, it’s only relatively recently that enough of us have lived long enough following our diagnoses for meaningful patterns of long-term treatment-related side effects to begin to emerge. People U 248 Treating Lymphoma are sufficiently idiosyncratic that it’s difficult to recognize a late side effect of a particular treatment as such—particularly a relatively uncommon side effect—unless large numbers of people have undergone the same treatment and experienced the same consequences. Therefore, some real consequences of lymphoma therapy probably remain unrecognized. For instance, of the various medical issues I’ve experienced following my lymphoma diagnosis, some are clearly related to my treatment, some are clearly unrelated, and the relationship of others to my lymphoma diagnosis and treatment is unclear. Remarkably, one of the long-term health issues most clearly linked to my lymphoma therapy is not one I’ve come across in the survivorship literature. I became susceptible to severe heartburn after undergoing radiation therapy to my chest. Initially controllable simply by avoiding alcohol and sweet, acidic foods—such as orange or grapefruit juice—this eventually developed into full-fledged gastroesophageal reflux disease (GERD) that requires daily medication to avoid chronic heartburn and an increased risk of esophageal cancer. My GERD medication increases my already substantial risk for osteoporosis (see below), and, despite taking it conscientiously, I have a chronic GERD-related cough that gets worse at the most inopportune moments. And, after twice getting pneumonia from aspirating refluxed fluid while I was asleep, I’ve learned to avoid eating within four hours of bedtime and to never ever drink teas containing peppermint . So I view my GERD as somewhere between “minor nuisance” and “serious condition” and certainly significant enough to include on any list of potential complications of lymphoma therapy. But I’ve never heard about GERD as a complication of lymphoma therapy (or thoracic irradiation). Perhaps this is because GERD is so common relative to radiation-treated mediastinal lymphoma that no one else has made this connection. Or perhaps the circumstances that led to my developing post-treatment GERD were so unusual (uncontrollable vomiting so severe I needed to be hospitalized and, shortly thereafter, developed a hiatal hernia) that this complication of thoracic irradiation hasn’t been common enough to make it onto the “post-treatment complications” radar. Regardless, this sort of experience underlines how hard it can be to define something as a late effect of therapy unless there’s a sufficiently large group of people who have undergone the identical treatment. Second, changes in lymphoma therapy have made understanding the long-term consequences of that therapy a moving target. The recognition Survivorship 249 V that the treatments that saved our lives could have serious long-term consequences has led to constant and ongoing modifications to these therapies aimed at minimizing those risks. For instance, following the demonstration that the MOPP chemotherapy regimen (mechlorethamine, vincristine, procarbazine...