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Newly Diagnosed With Advanced NSCLC: What You Need to Know

Updated on April 06, 2021
Medically reviewed by
Todd Gersten, M.D.
Article written by
Annette Gallagher

  • Shared decision-making with your oncologist and care team can lead to better treatment outcomes and satisfaction.
  • Planning and organization can reduce the stress and anxiety of a cancer diagnosis.
  • Emotional and mental health are important to successful cancer care.

Any cancer diagnosis is cause for concern, but a diagnosis of advanced non-small cell lung cancer (NSCLC) can be especially overwhelming. Knowing what to expect as treatment begins, understanding your prognosis, and communicating openly with your doctor can help manage the anxiety and emotions of an advanced NSCLC diagnosis.

What Is NSCLC?

Non-small cell lung cancer is the most common type of lung cancer, accounting for at least 84 percent of all lung cancer diagnoses. There are several subtypes of NSCLC, including large cell carcinoma, squamous cell carcinoma, and adenocarcinoma. The prognosis and treatment options for these subtypes tend to be similar. NSCLC is considered advanced when it has spread outside the original location of the first tumor.

Learn more about advanced NSCLC.

How Is NSCLC Treated?

Like many kinds of cancer, non-small cell lung cancer is treated with a variety of options. These include radiation therapy, chemotherapy, targeted drug therapy, immunotherapy, and surgery. Clinical trials may also be available.

Palliative therapies may help improve the quality of life for people with lung cancer. Palliative therapies can include removing blockages from airways, easing the buildup of fluid in the lungs, and treating the buildup of fluid around the heart. Treatments will be determined by how advanced the cancer is when it is detected, as well as factors like general health and the strength of the immune system.

Shared Decision-Making Can Help

In today’s world of oncology, shared decision-making is ever more important. Patient advocates recommend shared-decision making in health care, which encourages two-way communication. Rather than asking people with cancer to simply listen to their treatment teams and follow instructions, shared decision-making places an emphasis on collaboration. The treatment team and the person with NSCLC discuss the available treatments, the pros and cons of each option, and the greater wishes of the person with cancer before moving forward on any treatment plan. This view puts the person being treated at the center of the treatment.

Why is this approach so important? Shared decision-making can lead to better outcomes for anyone undergoing medical treatment. People are more comfortable with the care they get when they fully understand the options and feel their concerns and preferences have been taken into account. They feel like they have greater control in a challenging situation and report more satisfaction with the treatment plans they choose. This communication builds trust between doctors and those undergoing treatment.

Advocating for yourself is key to the shared decision-making process. The process only works when people understand how important it is that they ask questions and express their concerns to their oncologists and treatment teams.

Stay engaged throughout your cancer treatment. Learn about your condition from your health care team and from reputable sources like the American Cancer Society and the American Lung Association. Ask questions at your doctor’s appointments. You may also look into seeking a second opinion.

Planning and Organization Can Reduce Stress

For many people, a diagnosis of advanced non-small cell lung cancer can feel overwhelming. There is a lot of information to process and decisions to make, often in a short time. Getting organized and planning on paper can help ease stress and make cancer treatment a little easier to manage. In general, organization reduces stress and improves sleep, both of which boost overall health and well-being.

Financial and Medical Paperwork

What can you organize to make life a little easier after a cancer diagnosis?

  • Treatment plans
  • Medical bills
  • Insurance paperwork (home, health, life, or others)
  • Power of attorney
  • A living will or advance directive
  • A will
  • Other financial paperwork

Find a system that works for you. Whether that means an accordion file for paperwork or a shared cloud drive with scans of everything important (or both), it can help to sort and group documents clearly.

Don’t be afraid to ask for help planning and organizing all the details that will come into the process; it’s a lot to manage alone. Make sure your spouse, partner, or other trusted friend or family member is aware of the location of all important information — and of your wishes. Making as many decisions ahead of time as possible will make treatment and any potential end-of-life care easier for everyone involved, including family and caretakers.

End-of-Life Planning

Life expectancy with lung cancer is unpredictable. A lot of variables factor into individual outcomes, and it’s important to consider different possibilities. The American Lung Association has a downloadable life planning worksheet that may be helpful in clarifying your priorities.

Conversations about living wills, funeral plans, end-of-life care, and other details can be difficult. Start with your doctor. (Even doctors have a difficult time with these conversations with the people they treat, so let your health care team know when you are ready to discuss cancer plans or end-of-life issues.) It’s hard to do, but it can help to make your loved ones aware of your wishes and plans early on.

Emotional Health Is as Important as Physical Health

Any diagnosis of cancer is a lot for most people to deal with. Advanced non-small cell lung cancer is no different. Anxiety, stress, depression, hopelessness, lack of control — all of these are entirely natural reactions to being diagnosed with advanced cancer.

Approximately one-third of people diagnosed with advanced NSCLC show symptoms of moderate to severe depression shortly after diagnosis. Some research shows that those diagnosed with advanced non-small cell lung cancer experience more intense symptoms of depression than people with other types of cancers. This is because of the complexity and difficulty of the disease in advanced stages.

Strategies for Improving Emotional Health

Acknowledging difficult emotions as real and normal, then addressing and managing them, can help improve your quality of life with advanced NSCLC. The following strategies can help.

Maintain Social Connections

It’s tempting to close yourself off during times of intense stress, but maintaining social connections is important to treating any illness. Let your friends and family know what’s going on so they can support you. It’s normal to feel like no one will understand, and some of your relationships may change, but most people will want to be there for you in whatever ways they can.

Journal

Journaling can help with managing the emotional response to a lung cancer diagnosis and treatment. The simple act of putting your emotions into words on paper (or a screen) can reduce stress, manage anxiety, and cope with depression. It can also help you assess priorities and track your physical and emotional symptoms. Try to journal for a few minutes every day. Make it easy to do, with pens you love or a cozy nook for your laptop.

Find a Support Group

Your cancer treatment center may have support groups you can join. Conversations with people going through the same things you are can ease the burden of a stressful experience. While support groups are traditionally in-person experiences, in the era of COVID-19 online options are more widely available. The American Lung Association and the American Cancer Society offer information about support groups for people with lung cancer. You can also lean on MyLungCancerTeam members for support.

Consider Therapy

More cancer treatment centers are recognizing that improving the psychological well-being of people with lung cancer can positively impact treatment. Although not all centers have on-site therapy services for the people they treat, they may be able to provide referrals to appropriate providers. Ask your doctor or health care provider for more information.

Seek Religious or Spiritual Guidance

If you are spiritual, support from a religious or spiritual advisor may also be a source of comfort during this time. A clergy member from your faith community or a hospital chaplain can be helpful to you and your family as you navigate advanced NSCLC.

Getting a diagnosis of advanced non-small cell lung cancer has a significant impact on those who live with it and their loved ones. Shared decision-making with your treatment provider, organizing and planning, and protecting your mental and emotional health can help make that impact easier to bear.

You Are Not Alone: Learn More About Managing a Diagnosis of Advanced NSCLC

By joining MyLungCancerTeam, the social network for people living with lung cancer, you’ll gain a community of people with similar diagnoses. You can discuss treatments, managing side effects, and more with other people who know what you’re going through.

How are you managing your lung cancer diagnosis? Have you found ways to improve your symptoms? How are you feeling day-to-day? Share your tips and experiences in a comment below or on MyLungCancerTeam to get support from others like you.

References

  1. Lung Cancer — Non-Small Cell — Cancer.net
  2. What Is Lung Cancer — American Cancer Society
  3. Palliative Procedures for Non-Small Cell Lung Cancer — American Cancer Society
  4. Treating Non-Small Cell Lung Cancer — American Cancer Society
  5. Shared Decision-Making — Lungevity
  6. The Consumer Benefits of Shared Decision-Making — Altarum Healthcare Value Hub
  7. What to Expect From Your Lung Cancer Journey — American Lung Association
  8. Health Benefits of Being Organized — Beaumont Health
  9. Planning for Life With Lung Cancer — American Lung Association
  10. Life Planning Worksheet — American Lung Association
  11. Addressing Depression Can Improve Quality of Life, Treatment Outlook Among Patients With Lung Cancer — Healio
  12. Journaling for Mental Health — University of Rochester Medical Center
  13. Lung Cancer Support Groups — American Lung Association
  14. Find Support Programs and Services in Your Area — American Cancer Society
Todd Gersten, M.D. is a hematologist-oncologist at the Florida Cancer Specialists & Research Institute in Wellington, Florida. Review provided by VeriMed Healthcare Network. Learn more about him here.
Annette Gallagher has a Bachelor of Science in broadcast journalism and political science from the University of Miami. Learn more about her here.

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