For one, only you know your needs and preferences, such as whether you’d like to prioritize more aggressive treatments or preserving quality of life. What’s more, your doctor can’t make a firsthand judgment about whether a side effect you’re experiencing is merely unpleasant but tolerable or a major barrier to living life the way you want. There are many elements involved in being your own cancer care advocate, from educating yourself about treatment options to making sure your family and healthcare team know your wishes, concerns, and priorities.
How Doctors and Patients Are Working Together
The treatment landscape for cancer in general — and lung cancer in particular — has changed enormously in recent decades, says Jyoti D. Patel, MD, medical director of thoracic oncology and assistant director for clinical research at Robert H. Lurie Cancer Center of Northwestern University in Chicago. “We’ve made huge strides, from a medical system that was top-down and very paternalistic to one that tries to put patients at the center and understand their preferences,” says Dr. Patel. “That has been a substantial change in medical education.” In addition, Patel says, there are more treatment options for lung cancer than ever before, from oral drugs to infused therapies, such as chemotherapy and immunotherapy. Some treatments have very similar efficacy but may differ in their risks and side effects. This means your doctor usually can’t know which treatment is best for you without your input. “It’s important that there’s shared decision-making,” says Patel. “Doctors and patients and friends and family need to help prioritize what’s most important to a particular patient at that time.” While you can’t know everything about potential tests and treatments right from the start, Patel says it’s important to be prepared for an onslaught of information and choices and to follow up by educating yourself about available options. Here’s how to take a more active role in your NSCLC treatment and overall care. Educate yourself about the disease and its treatments. After your diagnosis, you may want to learn all you can about NSCLC. Two good resources for people diagnosed with cancer are the National Comprehensive Cancer Network and the American Society of Clinical Oncology (ASCO), both of which offer detailed information and guidelines for patients. Your oncologist will most likely provide you with written information about drug treatments you may be a candidate for, including the potential for toxicity and different treatment intensities. “For chemotherapy, treatments are largely similarly effective,” Patel says. “We pick particular therapies based on patient and doctor preferences with toxicity.” This means that one treatment may cause hair loss, while another may not. Others may cause numbness or tingling in your fingers, which may or may not be important to you, depending on your daily activities. Certain treatments need to be administered in a doctor’s office more often, Patel says, which can also affect how much of a burden they present. Ultimately, only you can decide how to use this information to guide your treatment. “‘How can I live my best life with cancer?’ as opposed to, ‘How can I make my life all about fighting cancer?’ — those are two different points of view,” Patel notes. Keep an ongoing dialogue with your healthcare team. You shouldn’t have to wait for your next appointment to ask a question or express a concern that arises, says Patel. Many healthcare systems, she notes, have an online portal where you can view test results, review upcoming appointments and procedures, and submit a question to your doctor. Otherwise, pick up the phone, and a member of your doctor’s staff will take your question. Keeping in touch is especially important for certain newer treatments, such as targeted therapy, Patel says, because they may cause side effects that you should report. “These symptoms can be a little bit hard to pin down with just one meeting every three weeks,” she notes. In general, Patel says, you should let your doctor know loudly and clearly if your treatment isn’t working for you. Often, “Our expectation is that we have to suffer if we have a cancer diagnosis,” she notes. “That’s not my expectation. My expectation is that hopefully, cancer is a small part of your life, and side effects are minimal.” Ask questions when you don’t understand something. If your doctor makes a point that you don’t quite understand, don’t hesitate to interrupt and ask for clarification. “These are hard concepts to understand — targeted therapy and immunotherapy, quality of life, efficacy, toxicity,” Patel notes. Your doctor is used to talking about them all day, but you probably aren’t. Take advantage of other treatment and support services. Your doctor’s office may offer services beyond oncology-based treatment, such as physical therapy, nutrition counseling, psychological counseling, and palliative care. If these services aren’t offered in-house, Patel says, it’s generally easy to get referrals for another practice or location that does offer them. Connect with other people who have NSCLC. Many healthcare providers offer in-person cancer support groups, although Patel notes that connecting with them right after your diagnosis may be emotionally overwhelming. There are programs that pair someone who has been living with cancer for a while with someone who is newly diagnosed, which may offer a more personal way to connect with someone. Online support groups can also be helpful, although Patel recommends checking that oncologists or other healthcare professionals moderate the group. Bring a friend or family member along to appointments. This is especially important at earlier appointments, Patel says, since the amount of information can be a lot to take in. “Particularly at the beginning of your diagnosis, some of the information that your healthcare team may throw at you can be so overwhelming,” says Suzanne Cole, MD, medical director of the University Hospital Simmons Cancer Clinic at the UT Southwestern Medical Center at Richardson/Plano in Texas and an expert at ASCO. “You may hear the word ‘incurable,’ and your brain may just shut off and may not absorb anything beyond that, so it can be super helpful to have someone with you who can be another set of ears.” The other person can take notes while you listen to your doctor, which may make it easier to review what was discussed and ask any follow-up questions. You can also delegate researching treatments to another person if you’d rather not do it yourself, Patel says — especially if you’re having a difficult time adjusting emotionally to your diagnosis. Keep information on your appointments and treatment organized. Your healthcare team may give you a binder full of information on metastatic NSCLC and its treatments, which Patel says is standard for her practice and many others. This binder or folder may include materials for documenting your symptoms and side effects, keeping track of upcoming appointments, and figuring out what to ask your doctor. There are also apps available to track your symptoms and medications, Patel notes, including one from ASCO. Keep a journal. Once you’ve had time to digest all the information and discuss it with your family, you may have additional questions, says Dr. Cole. Jot down your thoughts and bring them with you to your next appointment. Get a second opinion. Many people are reluctant to seek a second opinion about their cancer because it feels uncooperative or disloyal, Patel says, but you shouldn’t feel that way. “This is a really tough disease, and you want to make sure you have as many options as possible.” . Even if the second doctor tells you the same things as the first, “Hearing it twice is often helpful,” she says. Remember that your doctor’s role is to ensure you get the best treatment, wherever it comes from. “No oncologist should feel offended,” Patel emphasizes. “We’re all in this together, and our primary goal is helping you live longer and better.” Additional reporting by Katherine Lee
