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When facing advanced stage non small cell lung cancer (NSCLC), you may want to discuss various things with your doctor. These may include your treatment options, potential side effects, outcomes, and support systems. Your doctor will inform you about what to expect in the future. You may also want to discuss things outside of your medical treatment, such as personal concerns and life goals. Here are some things you might want to discuss:
Treatment options
Your doctor can provide details about your cancer and discuss your treatment options. They can also inform you about the effectiveness of treatment, potential side effects, and how this treatment might impact your quality of life. „Metastatic NSCLC means that cancer cells have spread beyond the original tumor in the lung,“ says Dr. Jeffrey Ward, a medical oncologist at the Siteman Cancer Center in St. Louis. Your doctor may explain where the cancer has spread and recommend next steps, which may include further tests and appointments with a specialist. „It is incredibly important to feel comfortable having an open and honest conversation with your medical oncologist about your treatment goals,“ says Ward. An oncologist is a doctor who specializes in cancer.
Outlook for the future
A positive outcome is possible for advanced stage NSCLC. „In recent years, there has been an incredible explosion of new treatments for patients with advanced NSCLC,“ says Ward. Immunotherapy, which helps your immune system control cancer, and targeted inhibitors, usually taken as a pill, can keep your cancer in check for years, he says. The key is knowing which of these treatments is the best option for you. Special tests will help your doctor make the decision. „Unfortunately, these treatments will not be successful in all patients, so it is crucial to have an honest conversation with your oncologist about what to expect,“ says Ward. „Metastatic NSCLC is not a disease we consider curable. The goal of treatment is to prevent the progression of cancer and control your symptoms.“
Aftercare
Your doctor will also discuss aftercare with you. After treatment, there will be monitoring for recurrence, meaning your cancer has reappeared. NSCLC may carry a higher risk of developing a second lung cancer. Ask your doctor what your aftercare will look like. Inquire about future scans, blood tests, or other imaging studies. You can ask your doctor how likely it is for the cancer to recur based on your medical history.
Life goals and priorities
It is important to consider your priorities and communicate these to your doctor. This will help them develop the right treatment plan for you. „Is there a wedding, anniversary, or birth in the future that is most important to you? Do you want to check off items from your bucket list?“ says Ann Fish-Steagall, a registered nurse and Senior Vice President for Patient Services at the LUNGevity Foundation, a nonprofit organization for lung cancer patients. „Is it more important than anything else how long you live? Or is there a point in terms of quality of life that will be the boundary for you, such as immobility and pain?“ she says. Your doctor will want to know these things going forward.
Finance and responsibilities
Your doctor can help you plan for the future. They can discuss important steps you need to take, such as creating an advance directive and choosing a person to make medical decisions for you if you are unable to do so yourself. They may have suggestions to help you balance your care with your other responsibilities. They can discuss what to do if you are caring for someone else, have dependent children, or have a business or partnership to settle.
Support services
Ask your doctor what types of support are available to you for late-stage lung cancer. They can provide recommendations or referrals for mental health resources, caregiver support services, or resources for financial assistance.
Palliative care
At some point, you may want to consider palliative care. Your palliative care team may include doctors, nurses, social workers, chaplains, counselors, dietitians, pharmacists, and other providers specializing in palliative care. You may find them in clinics, hospitals, and long-term care facilities, or they may come to your home. Palliative care can help with anxiety, loss of appetite, communication, constipation, depression, fatigue, nausea, pain, shortness of breath, and sleep disturbance. Ask your doctor about working with a palliative care team. If changes such as loss of appetite, weakness, and extreme fatigue occur over a period of weeks or if they rapidly increase, it may be time for help, says Fish-Steagall.
Hospice care
„For many patients, despite our best efforts, a time will come when the treatment intended to slow their disease and control their symptoms no longer works,“ says Ward. At this point, your doctor may recommend hospice care. A hospice care team may include doctors, nurses, social workers, home health aides, counselors, and other providers who help you feel better as the focus shifts from active cancer treatment to symptom control. „Hospice care normally spans the last six months of life,“ says Fish-Steagall. „Usually, a hospice will require that patients do not want attempts at resuscitation and have planned for a peaceful death.“ Speak with your doctor about hospice care. Ask what is available, whether it is suitable for you, and what to expect.
End-of-life changes
Your doctor may discuss expected end-of-life changes and how to prepare for them. For example, you may sleep longer and take longer to wake up. You may be less able to care for yourself. „Usually, these are things a caregiver would want to know about,“ says Fish-Steagall. Your doctor may tell you what to expect when treatment is unlikely to help. „If a patient spends more than 50% of the day lying in bed or a chair, needing help with dressing, toileting, or drinking, the likelihood that this will be beneficial is lower,“ says Fish-Steagall.