Questions to Ask Your Doctor About Lung Cancer

Questions About Lung Cancer Diagnosis, Treatments, and Follow-Up

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What questions should you be asking about your lung cancer treatment?. Rob Lewine/Getty Images

If you've recently been diagnosed with lung cancer, your mind is likely flooded with questions. In addition, you are probably wondering what questions you should be asking that you haven't even thought about.

Why a List of Questions is So Important When You Have Lung Cancer

Having a list of questions to ask your oncologist about your diagnosis, treatment options, and prognosis, is critically important in getting the care you deserve.

Many of us have trouble remembering more than two or three questions we should be asking about minor things that happen in our lives. Being told you have something as major as lung cancer, complete with all of the emotions that accompany a diagnosis, can make this even more difficult.

At the same time, it's more important than ever to be asking questions. Cancer care if changing. Whereas there may have been only one option in the past (or none), there are now often multiple directions you can go with your treatment plan. We've been learning that those who act as their own advocate in their cancer care feel more in control and may even have better outcomes. Understanding what exactly what you are dealing with via asking questions is a good place to begin in advocating for the best care.

When Should I Have a List of Questions?

You may be wondering when you should come up with a list of questions.

The answer is right away and always. There are different questions (and examples below) you will need to ask at different stages in your journey, beginning before you are diagnosed, and continuing into survivorship care or choosing to stop treatment.

Bring a Friend to Ask Questions as Well

The old adage "two minds are better than one" is true when it comes to asking questions about your cancer.

Many people find it helpful to bring a good friend to appointments who can take notes for you and make sure all of the questions on your list have been answered. Your friend may even come up with questions to ask herself which you had not thought of, but which can give you a much better understanding of what you are are coping with.

Keep an Active Question List Going

Once you receive a diagnosis of lung cancer it can be helpful to purchase a "question notebook." You're likely to have many questions that arise between visits. The problem is that some of these questions may not be enough to prompt you to call your doctor, yet by the time you have your next appointment you may have forgotten the question. Keep your ongoing question list in an easy-to-find place and jot down questions as they arise between appointments. You may also wish to jot down questions others have asked you about your cancer between your appointments.

Questions You May Wish to Ask

In the next sections, we will give you some ideas of questions you may have. You may wish to copy this list and place it is your question notebook. Some of these questions won't fit your unique circumstances, but many will. Make sure to add your own questions to this list.

Questions to Ask During Your Diagnosis (When Your Diagnosis is Uncertain)

Your questions are likely to begin even before you are diagnosed:

  • What tests will youI need to have to confirm (or exclude) the diagnosis? (Here is an article describing some of the tests used to diagnosis lung cancer.)
  • What are the risks of the tests that are done to diagnosis and determine the stage of a lung cancer?
  • Will you experience any discomfort related to these tests? If so, how will it be managed?
  • When will your results be available? 
  • How will you get your results? Will your doctor call you or do you need to make a separate appointment to get your results?

    Questions to Ask When You Receive a Diagnosis of Lung Cancer

    When you are first diagnosed with lung cancer you're likely to have a multitude of questions. Take heart if you don't get all of these answered during your first visit. There are some questions that take priority at this time, and others for which it is okay to wait awhile to understand.

    • What type of lung cancer do you have?
    • What is the stage of your lung cancer?
    • Has molecular profiling (gene testing) been done on your tumor? (This should be done for everyone with non-small cell lung cancer but is sometimes, unfortunately, not done.) If so, do you have any "actionable gene mutations?" Actionable mutations refer to genetic changes in your tumor which may respond to one of the medications which target specific genetic changes in cancer cells. Examples include EGFR mutations, AlK rearrangementsROS1 rearrangements, and more.
    • How certain is your doctor of your diagnosis and stage? Are there any other tests which should be done, such as a PET scan or mediastinoscopy?

    Questions About Where to Receive Care for Your Cancer

    Deciding about where to receive your cancer care is an important decision, with many factors to consider. Questions may include:

    • Would you like to receive your care near family or friends?
    • Would you consider traveling to receive your care, either to go to a cancer center which does more with lung cancer or to become involved in a clinical trial?
    • Would it be possible to receive your care at more than one institution at the same time? For example, could you have an oncologist at a large cancer center out of town, but have an oncologist in your community administer chemotherapy?

    Here are some tips on how to choose the best lung cancer treatment center.

    Questions About the Treatment Options for Your Lung Cancer

    As noted earlier, there are many more options for treating lung cancer than there were in the past. Many people, in addition, receive more than one type of care. Radiation therapy and surgery are considered "local therapies." They treat cancer in the area in which it originates but do not address cancer cells which may have spread. In contrast, chemotherapy, targeted therapies, and immunotherapy are systemic treatments. They treat cancer cells wherever they happen to be in the body.

    The first step in treatment is determining whether you should have local therapy, systemic therapy, or both to treat your lung cancer. For very early lung cancers, surgery (or a type of radiation therapy) may be all that is necessary. If your cancer is advanced lung cancer (stage IIIB or stage IV) surgery is not usually done as it cannot remove cancer cells which have spread to distant locations. With advanced lung cancer, systemic therapies are the treatment of choice. For many people, a combination of local and systemic therapies are needed. Local therapy to remove the tumor, and systemic therapy to treat any cancer cells which may have spread (but can't yet be detected on imaging studies. A systemic therapy such as chemotherapy may also be done to reduce the size of a tumor so that surgery can then be performed.

    Another very important concept is the next steps you may need to take. What is the next step if whatever treatment you choose is ineffective?  Should you work during your treatment?

    Questions About Surgery for Lung Cancer

    • Can you have surgery for your lung cancer?
    • Will you need other treatments after lung cancer surgery, such as chemotherapy or radiation therapy
    • If you are unable to have surgery, might it be possible after shrinking your tumor with chemotherapy or radiation therapy?
    • What type of procedure is recommended? For example, a wedge resection, lobectomy, or pneumonectomy?
    • Is it possible to have less invasive surgery, such as VATS (video-assisted thoracoscopic surgery)? VATS results in more rapid recovery but is not possible with all cancers. In addition, not all surgeons are comfortable performing this surgery.
    • Should you have a second opinion with a surgeon who performs a greater number of lung cancer surgeries or does one of the newer less invasive procedures? (The outcome of lung cancer surgery is better at cancer centers which perform greater volumes of lung cancer surgery.)
    • How long will you be in the hospital?
    • How can you prepare for lung cancer surgery?
    • Does your physician recommend pulmonary rehabilitation either before or after surgery?
    • What complications may occur? Am I likely to have pain after surgery (such as postpneumonectomy pain or post-thoracotomy pain syndrome, and how are these managed?

    Questions About Chemotherapy, Targeted Therapies, and Immunotherapy

    • How often will you receive your treatments (or take a pill in the case of targeted therapies)?
    • How long will you be receiving the treatment?
    • How will your cancer be monitored, and how often, during treatment?
    • What are the common side effects of these treatments?
    • When should you call your doctor?

    Questions About Clinical Trials

    The National Cancer Institute recommends that people with lung cancer should consider taking part in a clinical trial. There are many clinical trials in place studying newer treatments for lung cancer, and in some cases, the only treatment for particular genetic changes in tumors is via a clinical trial.

    • Are there any clinical trials that your doctor is aware of which may fit with your specific cancer type? It is difficult for any physician to stay up to date on all of the clinical trials going on around the world. Fortunately, many of the lung cancer organizations have gone together to form a free clinical trial matching service in which a nurse navigator can help you determine if there is a clinical trial that would fit for you anywhere in the world.

    Questions About Symptom Managment

    • Who should you call if you have any symptoms or questions about your treatment? Who will be managing your care?
    • What can be done about specific symptoms, such as a cough, shortness of breath, or pain?
    • Are there any integrative treatments (alternative medicine treatments) which could be helpful in managing your symptoms?  Keep in mind that some vitamin and mineral preparations may interfere with treatments and that you should always talk to your doctor about any over-the-counter or nutritional supplements/herbs you wish to take.
    • What symptoms are considered an emergency with lung cancer?

    Questions If Your Cancer Progresses or Spreads

    • What are the next steps (and the steps beyond that) which are available for treating your cancer?
    • Should you have a repeat biopsy of your tumor (or in the case of EGFR mutations, a liquid biopsy) to see how your tumor has changed?
    • What are the side effects and what can you expect with these treatments?
    • When should you stop cancer treatment? (There are several more questions to consider if you are thinking of stopping treatment.)

    Question About Follow-Up after Treatment -  Survivorship

    Once you have been diagnosed, you will still be followed periodically by your oncologist even after your cancer treatment is done. There are further questions you may wish to ask about follow-up care after lung cancer.

    A Word From Verywell

    It can be overwhelming to face the amount of material thrown in front of you the minute you are diagnosed with cancer. It would be difficult enough managing this new information even without the emotions of a diagnosis of cancer.

    Lean on friends and loved ones. Learn to accept help. There is a very active lung cancer support community which can be a strong source of support, help you digest the mounds of information in front of you, and help you learn about new treatments.

    A positive point is that there is often time to both learn about your diagnosis and make the difficult decisions.

    If it is your loved one who has recently been diagnosed, check out these thoughts on "when your loved one has lung cancer."

    Sources:

    American Cancer Society. When Someone You Know Has Cancer.  Updated 04/29/16. http://www.cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/when-someone-you-know-has-cancer1

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