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15 CHAPTER 2 Symptoms and Diagnosis Being diagnosed with cancer can be overwhelming. Even the word itself is ominous. And almost always, the diagnosis is followed by a plunge into an unfamiliar world of medical tests and procedures. None of these procedures are fun; some of them are frightening, bewildering , or intimidating. And always, in the background, the threatening drumbeat : “What are they looking for? What are they going to find? Am I going to die?” If you start treatment immediately, you may feel as if you have lost control of your entire life. That’s what happened to me: I left my class one morning to have a chest X-ray, telling my students that they might have trouble reaching me that afternoon. I never returned to that class. I never saw those students again. I started a grueling round of diagnostic tests, and within a few weeks I began chemotherapy. Or, instead of starting therapy right away, your oncologist may tell you that you’re going to “watch and wait.” This surrealistic scenario involves first learning that you have cancer and then learning that you aren’t going to start treatment. You have cancer and you’re not supposed to do anything about it? Nothing? What does that mean? If you’ve just been diagnosed with lymphoma, you may be feeling frightened and vulnerable. You may feel as though you’ve lost control of your body and of your life. This chapter, on diagnosis, is intended to help you regain control and make sense of what’s going on. On the other hand, if you have been living with lymphoma for a long time, this chapter may help you better understand what was going on in those early days when you first heard the word cancer applied to you. U 16 Living with Lymphoma Symptoms Sometimes lymphoma is diagnosed during a routine checkup. Maybe a chest X-ray shows a mass, or maybe some abnormal results appear on a blood test. Most people, though, have some symptoms. The wide variety of lymphoma symptoms reflects the many possible manifestations of the disease. Both the specific type of lymphoma you have and the location of the growing mass of cancer cells will influence what symptoms appear, since lymphocytes—and hence lymphoma—can be found anywhere in your body, and symptoms are in part determined by what normal structures are adjacent to the mass. The symptoms may seem deceptively innocuous—maybe a “swollen gland” on the side of the neck or generalized, inexplicable itching. Symptoms may be vague and nonspecific—none of the symptoms described here would, by themselves, cause a physician to announce, “Aha! Lymphoma!” Nonetheless, certain symptoms are common and fall into recognizable patterns. Enlarged Lymph Nodes The most common symptom of lymphoma is painless enlargement of one or more lymph nodes. In fact, in more than two-thirds of persons with lymphoma , visible enlargement of lymph nodes is the symptom that sends people to the doctor. Lymph nodes are small, bean-shaped organs found at junctions in the lymphatic system—a series of interconnected vessels that carry a colorless fluid called lymph through your body (see Chapter 10). In both Hodgkin lymphoma and NHL, lymph node enlargement, or lymphade‑ nopathy, is most frequently noticed in the lymph nodes of the neck. Nodes in the groin and armpit are commonly enlarged in NHL as well. Slowly growing forms of NHL—often called low-grade or indolent NHL—often involve widespread lymphadenopathy affecting multiple nodes. It’s important to note that lymph nodes can be enlarged for many reasons other than lymphoma and that not all strange lumps are lymph nodes. Lymph nodes can swell up, for example, as they fill with rapidly dividing lymphocytes as part of the normal immunological response to infection. They can also become enlarged due to the spread of other forms of cancer, as a result of various diseases in which there is abnormal activity of the immune system, or even in response to certain drugs (notably Dilantin and carbamazepine , two drugs used to treat epilepsy). In fact, the vast majority of Symptoms and Diagnosis 17 V people with enlarged lymph nodes—about 99 percent—have completely benign conditions. Lymph nodes that grow in response to infectious disease tend to be tender (painful to the touch), and the skin in the vicinity of the enlarged node may appear inflamed. Lymph nodes that are enlarged because of the spread of forms of cancer other than lymphoma...


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