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Learning About Lymphoma

How should I choose an oncologist and hospital?

Your primary care doctor will probably have referred you to a specialist who is likely a medical oncologist, hematologist or hematologic oncologist. Before agreeing to treatment by a doctor or clinic, be certain that your medical and personal needs will be met. Take time to check your doctor's credentials, as well as the credentials of the hospital or cancer center.

Bear in mind that if you are in a managed care program, your choices may be limited. However, if you are not entirely satisfied with your first consultation, you have the right to choose another health care team. Ask your primary care doctor for another referral, or ask other patients with lymphoma for their suggestions. You must feel confident about the medical team and the quality of care you are receiving.

Should I get a second opinion?

Before you start therapy, you may want a second opinion about the diagnosis and treatment plan. Some insurance programs require second opinions; others may cover it if a patient requests it.

Many oncologists are associated with a tumor board, which is a gathering of several kinds of cancer specialists who have different experience and backgrounds. At a tumor board meeting, your doctor may present information about you and your disease. The other doctors will look at the information and offer their opinions and ideas.

You may prefer to get the opinion of a different oncologist. If you do, remember that it is best to have a complete copy of your medical records (original x-rays, pathology, scans, and reports) delivered to the consulting doctor, preferably before your appointment. It is generally best to get copies of all of these materials and deliver them yourself. A second opinion is not considered adequate unless the tumor sample is reviewed by another pathologist, preferably an expert in lymphoma. Your referring doctor or your health care plan can often recommend an oncologist you can visit to get a second opinion. 

How can I communicate with my healthcare team?

People who are diagnosed with lymphoma often want to learn all they can learn about their disease and treatment choices so they can take an active part in the decisions about their care. Many people, however, are shocked to learn that they have cancer, and the initial evaluation may be accompanied by a lot of physical and emotional stress. Some people are uncertain about how to talk with doctors, and the combination of emotional stress and uncertainty may make it difficult to know what to say or what questions to ask.

Throughout the course of your illness, keep track of all questions that come to mind. Write them down because eventually you, your family, and friends are going to want answers. Before meeting with your doctor or nurse, whether for the first time or for follow-up visits, organize and write out your questions. Put the two or three most important questions at the top of your list, since time with your doctors or nurses may be limited. But make sure a member of your medical team reads all of your questions, because they may see some that are more important than you have realized.

It is helpful to have a member of your family or a close friend accompany you to the clinic to help you ask questions and understand and remember answers. It can also be helpful to write down the answers to your questions. Some patients bring a tape recorder to record the answers. Do check with your doctor first, however, to make sure he or she does not mind if you tape the conversation. 

In general, questions about chemotherapy should be directed to the medical oncologist, and questions about radiotherapy should be directed to the radiation oncologist. Most oncology nurses are also very well informed about cancer treatments, so oncology nurses are a wonderful source of information on a wide range of topics relating to your care.

How can I actively participate in my health care?

Attitude is also very important. You are a partner in your treatment and many patients feel better and do better when they participate actively in their care. The first step in participating in your treatment is to ask questions, learn about your options, and work closely with your doctor. You must be comfortable with your physician and the approach that he or she takes to treatment. If you are not, discuss your concerns. Remember, confidence in your medical team fosters optimism. If it becomes apparent that you and your team are not a good match, ask for a referral.

If you are interested in talking to and learning from people who have had similar experiences, ask your oncologist, hematologist, oncology nurse, or the oncology social worker about any support groups in your area.
 

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