helpline@lymphoma.org and ask about the LRF “Clinical Trials Information Service.” The healthcare team may also include other healthcare professionals such as an oncology nurse, nurse practitioner, physician assistant, clinical research coordinator, social worker, and registered dietitian. The healthcare team works together and consults with the patient to plan, carry out, and monitor the treatment. What Is a Prognosis? Prognosis is the medical term for predicting how a disease will progress and the likelihood for recovery, which is often one of the first questions that patients ask their doctor. A prognosis is usually based on information gathered from hundreds or thousands of other patients who have had the same disease. This statistical information provides doctors with a general idea of what to expect when a patient is diagnosed with a specific type of HL, and it helps them select which treatments are most likely to work. Treatment of Hodgkin Lymphoma 42 Part 2 Keep in mind that no two patients are alike and that statistics from large groups of people cannot accurately predict what will happen to an individual patient. The doctor most familiar with the patient’s situation is in the best position to interpret these statistics and understand how well they apply to a patient’s particular situation. Patients should also bear in mind that most published statistics on treatment outcomes do not reflect the benefits of the most recent new therapeutics that might be used in treatment. What Are Prognostic Factors? The characteristics that help predict a patient’s prognosis are called prognostic factors. Favorable or good prognostic factors tend to be associated with better outcomes, while unfavorable or adverse prognostic factors tend to be associated with worse outcomes. To help doctors determine the best course of treatment, patients with classical HL (cHL) are grouped in prognostic categories reflective of their risk factors. Some of the adverse prognostic risk factors are listed in Table 5.1 and are derived from the International Prognostic Score. Note that the risk factors are somewhat different in pediatric patients. Table 5.1. Adverse Prognostic Risk Factors Stage Adverse Prognostic Risk Factors Limited Disease ■ Bulky disease (a tumor in the chest larger than one-third of the width of the chest, or a tumor at least 10 centimeters wide) ■ Cancer that has spread directly outside the lymph nodes to an adjacent site ■ A high erythrocyte sedimentation rate (ESR) ■ Cancer in three or more nodal areas ■ The presence of “B symptoms” (fever, weight loss, and night sweats) 43 Understanding Hodgkin Lymphoma Table 5.1. Adverse Prognostic Risk Factors (continued) How Does Bulky Disease Affect a Patient’s Prognosis? Bulky disease is defined as either (1) a tumor in the chest larger than one-third of the width of the chest, or (2) a tumor greater than 10 centimeters (about four inches) or greater than six centimeters in children located anywhere in the body. Patients with bulky disease may require more aggressive treatment than those with limited disease. However, while smaller tumors are usually easier to treat than larger tumors, patients with bulky HL also have a high chance of being cured. Stage Adverse Prognostic Risk Factors Advanced Disease ■ Male ■ Age 45 years or older ■ Stage IV disease ■ Low blood albumin (a type of protein) level (less than four grams per deciliter) ■ Low hemoglobin level (less than 10.5 grams per deciliter) ■ High white blood cell count (15,000 cells per microliter or greater) ■ Low lymphocyte count (fewer than 600 cells per liter, or fewer than eight percent of the total white blood cell count) Treatment of Hodgkin Lymphoma 44 Part 2 How to Decide What Treatment Is Best There are many effective treatment options for patients with HL. To identify which treatments may work best, doctors consider the following factors: ■ Type of HL ■ Stage, location, and bulkiness of the lymphoma ■ Presence or absence of symptoms, especially “B symptoms” (fever, weight loss, and night sweats) ■ Results of blood tests and other laboratory tests ■ A patient’s overall health, age, and performance status ■ A patient’s prognostic factors ■ A patient’s preferences and goals for treatment ■ Whether the treatment is the first the patient has received or the disease has relapsed (returned after prior therapy) ■ Whether the treatment will impact future treatment options ■ Availability of a clinical trial The doctor will discuss the risks, benefits, and side effects associated with the different treatment choices applicable to the patient’s particular situation. Patients and caregivers should share questions and concerns with the doctor so that together they can decide which option is best. It is always helpful for patients to write down their questions and go over them with their treating physician and/or team. The questions on the next page can be used to guide the conversation and help patients make an informed decision about their treatment plan. 45 Understanding Hodgkin Lymphoma PATIENT T Questions to Ask PI Before Treatment Begins ■ What is my exact diagnosis? May I have a copy of the report from the pathologist? ■ What is the stage of my disease? In what area in the body is it specifically located? ■ What are my prognostic factors, and what does that mean? ■ What are my treatment choices? Which do you recommend for me and why? Would choosing one treatment prevent me from getting a different kind of treatment? How are the different treatment choices administered? ■ What is a clinical trial? Are clinical trials available that are studying new treatments for my type of HL? Would a clinical trial be appropriate for me? How would I benefit? ■ Do I need more than one type of treatment? ■ What is the goal of treatment? What are the expected benefits of each type of treatment? ■ How will we know if the treatment is working? What tests will I need to determine if treatment is working, and how often will I need to be tested? ■ What are the risks and possible side effects of each treatment? Can these side effects be prevented or controlled? ■ What should I do to take care of myself during treatment? ■ Are there any late or long-term side effects I should be aware of? ■ Will treatment impact my ability to have children in the future? Is there time for sperm banking or egg harvesting before starting treatment? ■ How long will the treatment last? ■ What are the chances the treatment will be successful? Treatment of Hodgkin Lymphoma 46 Part 2 When to Get a Second Opinion Before starting any type of treatment, a patient may want to consider getting a second opinion, especially if the diagnosis is rare, complicated, or uncertain. The purpose of the second opinion is not to question the doctor’s expertise but to make sure the suggested treatment plan is the best choice for the patient’s particular case, as well as to evaluate alternative treatment options, including clinical trials. Most doctors are supportive and helpful if patients tell them they would like to get a second opinion. Patients should ask the doctor if it is safe to briefly delay the start of treatment to provide the time needed to get a second opinion. Some insurance programs require second opinions, and others may pay for a second opinion if a patient or doctor requests it. When getting a second opinion, patients might want to consider the tips outlined on the following two pages. Questions to Ask Before Treatment Begins (continued) ■ How will the treatment affect my normal activities (for example, work, school, childcare, driving, sexual activity, and exercise)? ■ Is there anything my caregiver needs to do to prepare to care for me while I undergo treatment? ■ Will I be able to work during treatment? Will I be able to drive or take public transportation during my treatment? ■ Should I take care of other medical or dental issues before I start treatment? ■ How much will the treatment cost? Will my insurance cover some or all of it? What will my out-of-pocket costs be? 47 Understanding Hodgkin Lymphoma PATIENT T Getting a Second Opinion PI ■ Some hematologists/oncologists/lymphoma specialists associated with medical schools or cancer centers may be willing to provide a consultation and work together with a local oncologist to provide treatment and follow-up care. ■ As part of the second opinion, another pathologist must review the tissue and blood samples to confirm the diagnosis. The pathology of HL is often complex, and some pathologists may have limited experience analyzing HL cells, so it is valuable to have the pathology results reviewed by an expert hematopathologist with extensive experience in lymphoma. ■ To get a second opinion, you will need to provide the consulting doctor with a complete copy of all medical records, pathology samples, images and scans, and reports. When you set up the appointment, ask the office for a list of the materials you need to bring. It will be useful to keep your own copy of all these records in case you have questions or concerns later on. To identify HL specialists to contact for a second opinion: ■ Ask your current doctors, family members, other patients, friends, and coworkers. ■ Contact the patient referral service at your local hospital and at the nearest hospital associated with a medical school; many hospitals have online directories that can be searched to find a specialist in your area. ■ Visit LRF’s website at www.lymphoma.org or contact the LRF Helpline by phone (800-500-9976) or email (helpline@lymphoma.org). However, note that LRF does not provide a physician referral service. ■ Visit the American Society of Clinical Oncology (ASCO) website at www.cancer.net to search their oncologist database. Treatment of Hodgkin Lymphoma 48 Part 2 How to Find an Oncologist and Treatment Center A patient’s primary care doctor usually makes a referral to a medical oncologist, hematologist, hematologist/oncologist (adult or pediatric). Before agreeing to treatment by any specific doctor or treatment center, patients and caregivers should make sure that they feel comfortable with the healthcare team and the quality of care they provide. Patients need to feel confident that the providers they select can meet their medical and personal needs. The following questions can be used to help patients select the best medical team. Getting a Second Opinion (continued) ■ Visit the American Society of Hematology (ASH) web page at www.hematology.org/patients to search for hematologists with expertise in lymphoma. ■ Visit the American Board of Medical Specialties (ABMS) Certification Matters website at www.certificationmatters.org to find out if doctors are board certified in a particular specialty. PATIENT T Questions to Ask to Select the PI Best Medical Team ■ What are the credentials of the doctor, the other members of the medical team, and the hospital or cancer center? ■ Is the doctor board certified as a medical or pediatric oncologist or hematologist? Has he or she passed qualifying examinations by the American Board of Internal Medicine or American Board of Pediatrics to certify competency in these specialties? ■ How much experience do the doctor and treatment center have in treating patients with HL in particular? 49 Understanding Hodgkin Lymphoma Patients enrolled in a managed care health insurance program may have limited choices. However, patients have the right to choose another healthcare team if they are not entirely satisfied or comfortable with their first consultation visit. They should talk to other patients and caregivers about their experiences and ask them if they would recommend their doctor and healthcare team. Patients and caregivers who are not satisfied with their healthcare team should also share their concerns with their primary doctor and ask for a referral to a different doctor. Questions to Ask to Select the Best Medical Team (continued) ■ How many patients with this type of HL are being treated at this center now? ■ Does the doctor and/or center participate in clinical trials? ■ Does the clinic or center have modern surgical facilities and diagnostic equipment? ■ Is the doctor or clinic affiliated with any major medical center or medical school? ■ In case of an emergency, what arrangements are made for medical assistance after hours and on weekends? ■ Is my health insurance accepted at this center? Will the treatment center file claims for reimbursement and process the paperwork? ■ What kind of patient resources does the clinic or cancer center have for patients with HL? ■ If I see other specialists (cardiologist, endocrinologist, etc.), will the doctor coordinate my cancer care with my other doctors? Treatment of Hodgkin Lymphoma 50 Part 2