When you receive a diagnosis of cancer, you may feel as if you’re suddenly on an alien planet, with no map or guidebook to help you find your way to safety. By the time of your initial consultation with an oncologist, you’re likely to be frightened and confused—and that can interfere with your ability to take in essential information about your condition and make crucial decisions about your care. What helps: Knowing how to prepare for and what to expect at that important first visit with your cancer doctor.
To help you get the most out of that meeting, we turned to Stewart B. Fleishman, MD, founding director of Cancer Supportive Services at Continuum Cancer Centers of New York and author of Learn to Live Through Cancer: What You Need to Know and Do. Here are his suggestions.
Before your consultation…
Contact your insurance company to protect yourself financially. Find out whether you need an authorization to see the oncologist. If so, ask how long that will take—then schedule your consultation accordingly. It’s also a good idea to contact the oncologist’s office before your visit to make sure the authorization arrived.
What if your insurance company says that the authorization won’t come for a long time—even weeks? Ask to speak to a case-management service representative (sometimes called a disease-management or disease-coordination representative) at your insurance company, Dr. Fleishman suggested—often these people can be very helpful in getting you access to the services you need, especially if you stress the urgent nature of your request for authorization. Or you can pay the oncologist’s bill up-front, then file an appeal for reimbursement with your insurance company or through your state insurance ombudsman, again citing the urgency of the situation.
Arrange for your test results to be sent to the oncologist. Due to federal privacy laws, your oncologist’s office is not permitted to obtain these test results for you, Dr. Fleishman said. However, the staff at the oncology center will be able to tell you exactly which test results you should have sent in advance and what you should bring with you on the day of your consultation. For instance, you may be asked to arrange for or bring such items as the original glass slides from your biopsy…copies of your X-rays, CT or PET/CT scans…and results of any blood and urine testing.
Prepare a detailed personal medical history. Include current and prior illnesses…surgeries…allergies…and side effects from medication. Also list any prescription or nonprescription medications or nutritional supplements you currently take along with dosages. Be open about all conditions (such as a history of depression) and lifestyle factors (such as whether you smoke or have ever had a problem with alcohol or drugs) that may affect your treatment.
Gather info on your family medical history. Prepare a list of all your close relatives—parents, siblings, children, grandparents, cousins, aunts, uncles, nieces and nephews—on both your mother’s and father’s sides. For each, record their date of birth and current age or age at the time of death…for any relative who had cancer, list the type of cancer, age at diagnosis and outcome. This information can help your oncologist devise the most appropriate treatment plan, given that some cancers have a strong family pattern, Dr. Fleishman said.
Write down all your questions. Between now and the time of your appointment, carry a notepad or use your smartphone to jot down questions and concerns—about your treatment options and their side effects, complementary therapies, prognosis, etc.—as they come to mind. If you wait until the day of your consultation, you’re likely to forget some of the questions you wanted to ask.
Arrange to bring a trusted friend or relative to your consultation. “If you were looking at a new car or considering buying a house, you wouldn’t hesitate to ask a friend to come along as an extra pair of eyes and ears. Your initial oncology consultation is no less important—so follow the same principle,” Dr. Fleishman said. Patients typically retain less than half the information they hear at an initial consult, so ask your companion to serve as a scribe, taking complete notes on the conversation so you can review the details later. Also, urge your companion to think of questions for the oncologist—he/she might come up with issues that you had not considered but that turn out to be quite important to you.
During the consultation…
Arrive early—you’ll need to fill out a lot of paperwork unless the oncology office sent this paperwork to you to complete ahead of time or had you submit the forms online in advance. You will then meet with one of the oncologists, review your own and your family’s medical history, and get a full physical exam. After that, you can expect to…
Discuss additional needed testing. Although it may seem redundant, your oncologist probably will want to have your scans and slides reviewed by radiologists and pathologists whom he trusts and is accustomed to working with. This is not an attempt to wrest more money from you or your insurance company. Instead, Dr. Fleishman said, it is an important step in preventing errors. Your oncologist also may refer you to other cancer specialists for specialized blood work…additional scans (for instance, even if you have had a CT scan, the doctor may ask for an MRI)…and/or more sophisticated analysis of the biopsy. These tests help determine whether the cancer has spread and to where.
Review your doctor’s initial treatment plan. This will vary depending on the type of cancer you have, of course—but be prepared to hear some unexpected options. For instance, many patients are surprised to be told that surgery is not necessarily their first step. “Until recently, surgery almost always came first. But today, sometimes chemotherapy and radiation are advised right away to shrink the tumor and allow for a smaller surgery,” Dr. Fleishman said.
Discuss whether a clinical trial is an option for you. Many patients assume that if an oncologist brings up the idea of participating in a clinical trial that is testing a new drug or other type of therapy, it must be very bad news. But this is not the case. “Do not assume that if a clinical trial is mentioned right at the initial consultation it means that your oncologist isn’t sure what to do or that standard therapies can’t help you,” Dr. Fleishman said. In fact, a clinical trial may be a way for you to get access to an effective treatment that is close to FDA approval but that would not be reimbursed by your insurance. Participation may require that certain steps (such as extra processing of a biopsy or special timing of tests) be undertaken right from the start.
Ask questions. Most doctors will invite you to ask whatever questions you may have, but even if yours doesn’t, don’t be shy or allow yourself to be hurried out the door. If the doctor says something that you don’t understand, request clarification. If you still don’t understand it, say so and request clarification again. Also, confirm that a copy of the consultation note (a written summary of your visit) will be sent to your primary care doctor and/or the doctor who referred you to the oncologist. You want all your health-care providers to be fully informed about your condition and on the same page with regard to the treatment plan.
After your consultation…
Try to be patient. Ordering additional tests, confirming the presence and extent of the cancer and devising a treatment plan generally will take some weeks. Unless time is truly of the essence—for instance, because you have already been admitted to the hospital or are having trouble breathing well or passing urine or stool—this waiting period is typical and will not negatively affect your health.
Get a second opinion from another oncologist. “If possible, the second-opinion consultant should not work in the same cancer center as the original oncologist. People who work together tend to think through problems in the same way after a while,” Dr. Fleishman said. Insurance policies vary, but many do cover that second-opinion consultation, particularly when provided by a doctor within a particular network. Your preparations for and expectations of this second consultation are identical to the first. Afterward, you should ask that the second-opinion information be sent to the first-opinion oncologist and your primary-care doctor. And don’t worry about offending the first doctor by seeking that second opinion. As Dr. Fleishman said, this practice is not only routine in the world of cancer treatment, it’s a vital step in giving you the very best chance of beating the disease.
