Before You Start Treatment

Diagnosis and Second Opinions

Chances are you've already seen one or more doctors about your condition. You may already have had some of the tests and procedures needed to fully diagnose your condition. Once they are completed, your doctor will use that information to determine the type and subtype of leukemia present, how far it has progressed, and your best course of treatment. If you are not acutely ill, you may want to get a second opinion on your treatment plan. You may learn that there is more than one way to treat your leukemia. Or you may confirm that what your first doctor suggested is indeed the most up-to-date and effective option, and so feel confident in choosing that path. A second opinion will give you an independent review of your situation and a recommendation for a treatment plan. If you have been encouraged to start treatment immediately, and do not have the time to seek out a second specialist, it might help to talk things over with your own primary care physician. Don't be afraid to tell your doctor you want a second opinion. Treatment for cancer is a serious undertaking, and you need to feel fully confident in the treatment decisions you make and in the doctors who treat you. A second opinion is standard procedure these days. How do you find a doctor who can give you a second opinion? First, ask your primary care physician or the doctor who has been treating you to date for a referral. Ask friends and family members, your insurance company, the benefits manager at your place of employment, the local office of the American Cancer Society, or one of the organizations listed in the Resources section of this program. You can also call one of the designated cancer centers recognized by the National Cancer Institute. Most have a physician referral service. When you make an appointment for a second opinion, make it clear that you are coming for that reason. Ask what you'll need to bring; you'll probably have to gather up all of your test results, so they can be reviewed at one time. Often, the two doctors will recommend similar treatment plans. Such information can help to assure you that you are doing the right thing. If the two recommendations vary widely, however, ask the doctors why. If you are still not comfortable choosing either option, get a third opinion.

Choosing Medical Care

As you select the various specialists who will provide your care, you'll need to make sure that one person on the team is in charge of your case. He or she will be responsible for coordinating your treatment, reading all test results, and making sure that no two aspects of your care are at cross-purposes. In most cases, this coordinator is the oncologist or pediatric oncologist. Don't assume that someone is in charge; ask. In addition to the doctor who oversees you, you may be assigned a nurse who coordinates treatments and other services. Following are some factors to consider when choosing doctors and medical facilities.

• Does the doctor specialize in leukemia treatment? Is he familiar with your type of leukemia? How often has he administered the recommended treatment plan? Does he specialize in working with children?
• Are you comfortable talking with this doctor? Does he listen to you and take your concerns into account? If he will be treating your child, does he interact well with children? Does your insurance plan include this doctor?
• Whose treatment recommendations do you feel most comfortable with?
• Is the doctor's office or affiliated hospital convenient? Treatment for leukemia can take several months to complete. If a specialist's office is not convenient for you, find out if you can have your primary care physician administer some aspects of treatment under the guidance of the specialist.
• Do you prefer a community hospital or a larger, specialized cancer center? A smaller hospital might feel more comfortable, but specialized centers, which usually are affiliated with an academic institution, may have better access to the newest treatment options and clinical trials. They may also offer a wide range of services under one roof, such as social workers, financial counselors, support groups, nutrition advisors, and more.
• If a form of transplant is recommended, how much experience do the doctor and the hospital have in that procedure?
• Do doctors at the facility participate in clinical trials?

To check on a doctor's background, you may want to contact the American Board of Medical Specialties. This is an umbrella organization for the boards that certify doctors in the various medical specialties. Doctors who have had specialized training and are eligible to take a certification exam in a specialty are termed board-eligible. Those who pass the exam are board-certified. Some doctors choose not to take the exam; if one is not board-certified it does not automatically mean he is less qualified than others. Other sources of information include The American Medical Association's Physician Select Service, the Association of State Medical Board Executive Directors, and the American Society of Clinical Oncologists. To find a cancer center recognized by the National Cancer Institute call 800-4-CANCER.

Communication Skills

Your relationships with your doctors and other health care providers are vitally important facets of your treatment for leukemia. They are the primary sources of information about your condition, and as such, it is crucial that you and they communicate well. The following tips may help to you facilitate these relationships and get the most out of each meeting.

• Write down your questions before your appointment, so you don't forget anything. Keep a notepad handy so you can jot down things as they occur to you.
• If you don't understand something, ask to have it repeated or explained in terms you understand. Don't be afraid to ask questions or voice your opinion.
• When meeting with doctors, consider bringing a friend or relative with you to help you remember what was discussed and take notes.
• Ask your doctor what the best method is for addressing later questions, particularly non-medical questions. Most doctor's offices have other professionals, such as nurses or administrative personnel, who can answer questions and refer you to other staff, such as social workers.
• Don't hesitate to ask for help. If one member of your health care team cannot answer your questions, ask for a referral to someone else. Many medical facilities have staff who can help patients with insurance, financial issues, work and school issues, and emotional needs.
• Ask if your doctor and other health care providers can answer brief, non-critical questions by e-mail. Sometimes that is the easiest way for busy people to get in touch.
• Consider joining a support group, either in your community, at the hospital, or online. You are likely to find people who have already been treated for leukemia and can help you to understand what is going on, or raise questions you had not previously considered. Of course, take all such information from non-professionals with a grain of salt; your best source of information is your doctor.
• If you are having persistent problems communicating with your doctor or his/her staff, contact the patient advocate office at the hospital. If you become frustrated in dealing with an administrative person, ask to speak to the person's supervisor.

Keeping Records

Your treatment may involve the care of several medical professionals. At times, it can be confusing and time-consuming, making sure that everyone has copies of all your medical records. You can ease this process by keeping a copy of everything yourself. Buy a three-ring notebook or some other filing system. Ask your doctors for copies of your existing records and for copies of all future tests and reports. Following are some items to keep in your notebook.

• A calendar log noting all medical appointments. Summarize what was done at each and any discussions you had with your doctor. Make note of all drugs taken.
• Copies of all test results. Ask for a duplicate of all lab reports. You may want to keep a separate log noting the progress of your blood counts over time.
• A calendar log noting all non-medical appointments, such as meetings with financial advisors, insurance personnel, and others. This should include phone conversations. Write down the names and phone numbers of the people you talked to, the issues discussed, and any follow-up needed.
• Copies of all insurance documents, claims, and correspondence.
• Copies of any other written materials concerning your care, such as letters of referral and second opinion summaries.
• A summary of your medical history, including major diseases, surgery, childbearing, current and past medications, allergies, and family history of cancer or other major diseases.

Making Decisions

Making important decisions about your health is not always easy. Sometimes the choices are clear. Sometimes it seems there is no clear choice. Here are a few guidelines that might help to make your decision-making process easier.

• Don't rush into a decision. If you are not acutely ill you might not have to decide on a treatment plan immediately. Ask your doctor how long you can safely ponder your choices or explore a second opinion.
• Get as much information as you can about treatment options. Often, as you learn more about something, and become more familiar with it, it becomes easier to identify it as clearly the right or wrong choice for you.
• For each choice you are considering, write down your concerns, expectations, and feelings. Sometimes the act of writing will bring out other questions you have, or just make everything a bit clearer.
• Talk to friends, family members, other people who have had cancer, or counselors. Choose people who are good listeners and can help you to explore your options, rather than those who will try to make your decision for you.
• Consider how your decision will affect your family, your lifestyle, your home life, and your job.

Questions to Ask

In considering any course of treatment, there are issues patients need to think about and discuss with their doctors. For example, what are the potential side effects of each treatment option? How effective is each for a particular type of leukemia? Following are some questions that patients might want to raise with their doctors.

• What type or subtype of leukemia do I have?
• What are my treatment options? (Be sure to understand what happens at all stages of treatment and how each option might affect future treatment choices, such as the ability to undergo a stem cell transplant.)
• What are the chances of long-term survival with this therapy?
• How might this treatment affect my quality of life, both short-term and long-term? Will it affect my ability to function in any way? Are there any possible side effects?
• Will I be able to have children after treatment? Is there anything I can do now to preserve my fertility?
• Am I eligible for any clinical trials?
• How many weeks or months does this treatment require?
• Is the treatment done in the hospital or on an outpatient basis?
• Is there anything I should do to prepare for treatment?