Your First Steps When Diagnosed With Lung Cancer

Coping, Care, and Practical Matters

The news of a lung cancer diagnosis is often soon followed by a flood of concerns, questions, and things to do. You may be experiencing a gamut of emotions ranging from anger and fear to depression and guilt. You may worry about the side effects of treatment, the costs, and what your diagnosis means in terms of survival.

All of these feelings and thoughts are reasonable, but they can be overwhelming. Like everything else, it's best to take a step back and prioritize what's most important in terms of next steps. Having a path to follow for the days and weeks ahead can help you not only make informed choices about your health care, but help you feel more in control of the chapter you're embarking on.

Accept Your Feelings

There are no "wrong" or "right" feelings when it comes to learning you have lung cancer. You may feel completely overwhelmed and blindsided. Or, you may not be sure how you feel or would rather not think about it. All of these responses are normal. Even denial can be protective, allowing you time to recover from the shock until you are better able to process the news.

It is important to accept these emotions, to express them to someone you trust, and to take time to sort through them.

Unless there is a critical reason to start treatment immediately, speak with your doctor and ask if it is reasonable to take a week or two to process things. If you feel completely overwrought, your doctor can refer you to a counselor, social worker, or therapist who can help.

According to a 2013 study in the journal Psychooncology, poor emotional well-being and stress are linked to avoidance behaviors as well as an inability to adjust to the emotional challenges of lung cancer treatment.

By taking a reasonable amount of time to adjust to your diagnosis, you can participate more actively in your treatment decisions rather than feeling like your world is spinning out of control.

Find an Oncologist

When you are diagnosed with lung cancer, there will be multiple members in your care team who will work cooperatively as you undergo treatment.

These may include a:

  • Primary care physician, who oversees your general health while you are undergoing cancer treatment
  • Medical oncologist, who oversees and chemotherapy and other drug therapies while serving as the primary coordinator of your care team
  • Surgical oncologist, who specializes in lung cancer surgery
  • Radiation oncologist, who oversees radiation therapy alongside a radiation therapist
  • Oncology nurses, who are the often the "point people" you regularly interact with when undergoing treatment
  • Pathologists, who are responsible for interpreting your lab results
  • Radiologists, who analyze CT scans, MRIs, and PET scans to see how well your cancer is responding to treatment
  • Oncology social workers, who work with you to provide counseling and connect you to the support services you need

When choosing a medical oncologist to oversee your care, look for someone who is qualified as a thoracic oncologist. This is a cancer specialist focused solely on cancers of the thorax (chest). The same applies to your surgical oncologist who should be qualified and credentialed as a thoracic surgeon.

To find an oncologist in your area, speak with your primary care physician, health insurer, or local hospital. The American Society of Clinical Oncology (ASCO) also provides a free online locator for ASCO-certified oncologists.

If the type of lung cancer you have is severe or uncommon, you may want to consider contacting your nearest National Cancer Institute (NCI)-designated cancer treatment center. There are 71 NCI-designated treatment centers located in 36 states and the District of Columbia, each of which delivers cutting-edge treatment with a staff of highly trained cancer specialists.

Prepare for Your First Appointment

Cancer treatment is considered a collaborative partnership between you and your medical team—one for which you have the right to be fully informed about every aspect of your care in a language you understand.

As such, you need to find an oncologist who is not only skilled but is willing and able to interact with you honestly, openly, and clearly. The specialist should be someone who listens to you fully and with whom you are at ease.

When first meeting with the oncologist, write down anything you want to ask in advance so you don't forget anything. As much as the meeting will be about your health and treatment options, it should also provide you insights about the people you intend to work with.

Here are some questions to ask, as recommended by the non-profit National Coalition for Cancer Survivorship:

  • What information do you use to make treatment decisions?
  • Are there different approaches to treating my type of cancer? If so, why aren't they being considered?
  • What are the chances that I can be cured?
  • What are your realistic goals for my treatment?
  • How will the treatment affect me?
  • What can be done to manage side effects?
  • Will I be able to work and take care of my family?
  • What are my chances of a long-term response with a good quality of life?
  • What information do I need to make an informed treatment decision?

As awkward as it may seem, do not hesitate to ask about the doctor's credentials, what experience they have with your particular cancer, and what percentage of the practice is devoted to that form of lung cancer.

Seek a Second Opinion

Getting a second opinion does not mean that you don't trust your doctor. A second opinion provides you with a sounding board by which you can weigh the pros and cons of a recommended treatment with an objective third party. Among other things, this can be validating or it can prompt you to reconsider next steps.

While there are certain standard protocols oncologists follow, there can sometimes be a divergence in opinions among treaters. Moreover, practices considered "standard" can quickly change as newer therapies and treatment protocols are released every year. This includes targeted therapies and immunotherapies that were largely unheard of until recent years.

If seeking a second opinion, consider contacting a specialist at an NCI-designated treatment center who is focused on your specific type of cancer. Some may be willing to conduct a virtual meeting if you don't live nearby, including a review of all of the lab and imaging reports your oncologist is able to send.

By advising your oncologist that you will be seeking a second opinion, you can ask for your records to be forwarded without making excuses or feeling embarrassed. Seeking a second opinion is common practice and often encouraged by oncologists.

Understand Costs and Coverage

Lung cancer treatment is expensive. If you have health insurance, start by reviewing your policy. Many cancer treatment centers have financial aid specialists available to assist you with this and other financial concerns.

When reviewing your policy, you will want to know:

  • Your deductible: The amount you have to pay for covered services before your insurance plan starts to pay
  • Your copay or coinsurance costs: The amount or percentage of a covered service or treatment you are responsible for paying
  • Your out-of-pocket maximum: The maximum amount you have have to pay in a calendar year after which all approved treatments are fully covered by your insurance plan

By working with a financial aid specialist, you can estimate your yearly out-of-pocket expenses rather than wondering (and worrying about) what the costs will be. The specialist can also help you determine if you should choose a new health plan by weighing, for example, if it is better to pay more upfront in premiums if that means your annual out-of-pocket maximum is low. Supplemental insurance can also be considered.

In-Network vs. Out-of-Network Providers

Any provider you use should be in-network, meaning that they've negotiated a fee with your insurer. Even though your oncologist may be in-network, other providers or facilities in which services are provided may not. Always check the provider status before undergoing any test or treatment.

If you cannot afford certain treatments, a financial aid specialist or social worker can connect you to financial assistance programs available to people with lung cancer.

These include:

Build a Support Network

It is difficult, if not impossible, to go through cancer treatment on your own. Beyond the emotional rigors, you will likely need assistance with things like transportation, childcare, and work as you undergo treatment.

Start by reaching out to loved ones, letting them in on what your diagnosis means, what is involved in treatment, and how they can help you (be specific). The more that friends and family understand your condition and needs, the more willing and able to offer support they are likely to be. They can even work as a team utilizing email distribution lists or care coordination apps/websites (e.g., Meal Train) to schedule who will pitch in when and how.

No matter how supportive your loved ones are, talking to others also dealing with lung cancer can be a unique source of comfort. Many hospitals and treatment centers have cancer support groups that allow individuals with cancer to share insights, concerns, and referrals with others undergoing lung cancer treatment.

If in-person support groups are not convenient or available to you, there are online support groups that can provide you with the one-on-one or group interaction you need as well.

A Word From Verywell

There is no minimizing the challenges faced by people with lung cancer. If you find that you are unable to cope, do not hesitate to ask for a referral to a psychologist or psychiatrist who can offer counseling or (in the case of a psychiatrist) prescribe medications to help overcome anxiety or depression.

The one thing to avoid is isolation. By working with your care team and support network, you will be equipped to find solutions to reduce the stresses surrounding the diagnosis and treatment of lung cancer.

You do not have to go it alone. Take this one day at a time.

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Article Sources
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  1. Kurita K, Garon EB, Stanton AL, Meyerowitz BE. Uncertainty and psychological adjustment in patients with lung cancer. Psychooncology. 2013;22(6):1396-401. doi:10.1002/pon.3155

  2. Denton E, Conron M. Improving outcomes in lung cancer: The value of the multidisciplinary health care team. J Multidisciplinary Healthcare. 2016;9:137-44. doi:10.2147/JMDH.S76762

  3. National Coalition of Cancer Survivorship. Essential questions to ask your doctor. 2013.