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Living With Lung Cancer

Medically reviewed by Todd Gersten, M.D.
Posted on January 28, 2022

The impact of lung cancer can spill over into various aspects of life. This article provides examples of the social, physical, financial, and spiritual effects of lung cancer. Read on to find tips that others living with the disease have discovered to not only cope but also thrive during challenging times.

Impact on Food and Eating

Both small cell lung cancer and non-small cell lung cancer may be treated with chemotherapy. The side effects of chemo often include changes to appetite and sense of smell and taste. Depending on the tumor size and location, people with lung cancer may also experience trouble swallowing food. Appetite changes and swallowing difficulties can lead to weight loss and muscle wasting that make it difficult to maintain energy levels and quality of life.

Taste Changes

Many members of MyLungCancerTeam have described their eating habits during treatment.

“I had no appetite, and everything had no flavor when I was going through daily radiation and chemo for six weeks. I used to have to make myself eat,” one MyLungCancerTeam member wrote. “I’m happy to say that about three weeks after treatments, my appetite returned.”

Another member commented, “When I was on chemo, everything tasted like pennies. The only thing that tasted like it should was peanut butter and jelly.”

MyLungCancerTeam members found ways to cope with taste changes by finding the few foods that were palatable: “I survived my chemo with banana popsicles, instant mashed potatoes (plain) and water, water, and more water until the week before the next treatment, when I would crave beef,” one member wrote.

One member suggested nutritional shakes: “When I could not put anything in my mouth without gagging, I would go back to drinking Ensure. The secret, I found out, is to have it really cold and shake it until it is foamy, like a milkshake. Drink it from a glass container. It would fill me up and give me some nutrition at the same time. It is a bummer when you want to eat but simply can’t put a bite into your mouth.”

Members also sought professional support when they were struggling with appetite changes. “I had a great dietitian at my oncologist’s office who helped me with high-calorie shakes and a list of spices to flavor food. I had no weight loss. It might help to have a visit with one,” a member shared.

Swallowing Issues

Lung cancers that require treatment near the throat can make eating even more of a challenge.

“I also had problems with being able to swallow. My radiation treatments were on my upper right lung, and they had to hit it from the front and back. This was so close to my throat that I lost my voice and had some burning in my chest,” one member wrote. This member reported improvement about a month after completing radiation.

Exercise

Many experts have recommended that people with lung cancer become more active to strengthen the lungs and reduce overall fatigue. Exercise isn’t always easy when you have lung cancer. If you have shortness of breath or low energy levels, working out may be the last thing on your mind.

However, many MyLungCancerTeam members have described the positive impact that physical activity has had on their lives: “I just returned from my morning walk. I feel better after a brief period of exercise. Sometimes, I get a bit winded. But, then we slow our pace a little and continue. Exercise not only helps physically, but it also helps me deal with anxiety and sleep.”

“Exercise helped me too,” another member wrote. “I made a chart to track what I do. I have lung cancer, and the exercise is helping with my capacity. Plus, it just feels good. I heard once that ‘exercise and stress are mutually exclusive.’ That means, they cannot exist at the same time.”

You don’t have to dive right into intense exercise. Sometimes, a little movement goes a long way. If you’re unsure where to start, talk to your health care team or ask for a recommendation for a physical therapist. These specialists can help devise an exercise plan tailored to your unique abilities, needs, and goals. You may also find that hobbies like walking or gardening provide a convenient way of fitting light physical activity into your daily routine.

Managing Stress

The daily burden of cancer treatment along with life’s other responsibilities can contribute to mental and emotional distress. Studies have found that some people who undergo lung cancer treatment have been known to experience increased levels of depression and anxiety.

Some of the most popular ways for MyLungCancerTeam members to manage stress include gardening, writing poetry, journaling, refinishing old furniture, and praying.

The American Society of Clinical Oncology suggests the following tips to manage stress:

  • Avoid worrying about things that are out of your control
  • Break things down into smaller steps when you can
  • Make time to socialize and do hobbies that you enjoy
  • Prioritize tasks and focus on the most important ones first
  • Set limits, say no, or ask for help when you need it
  • Spend more time outside
  • Try meditation or yoga to help you relax
  • Use a calendar to avoid scheduling conflicts or overscheduling

You can also seek support from a mental health professional who can help you manage stress and other emotions related to lung cancer. Lung cancer support groups, whether online or in-person, are another resource for talking about the stress of cancer.

Smoking Stigma and Cessation

Tobacco is responsible for 90 percent of men’s lung cancer cases and 80 percent of women’s cases. Smoking is the most common cause of lung cancer, but it’s not the only cause.

Members of MyLungCancerTeam have described feeling judged by others: “I get a bit upset when people hear lung cancer and assume, ‘Oh, you’re a smoker.’ Maybe I am, but I was also raised on a farm when crop chemicals first came into use. These are now considered cancer-causing. Then, I worked as a machinist with cleaning chemicals, poor ventilation, cutting oils, etc. My next job was in printing with almost the same conditions, BUT as soon as you say you are a smoker, that becomes the cause,” one member shared.

The member added, “As a smoker, I asked for chest scans over the last seven to eight years. I was proactive, which saved my life. Twice, lung cancer was caught in the very first stage. Many cancers fall into ‘lung cancer’ headings. Don’t judge anyone when you hear the term ‘lung cancer,’ and don’t let anyone put you down for having lung cancer.”

Even if smoking weren’t directly responsible for your lung cancer, quitting is never a bad idea. People with early-stage lung cancer who quit smoking help slow disease progression. Those in remission may prevent the development of secondary cancers.

Talk to your doctor if you need support with smoking cessation. They may be able to prescribe medications or recommend other resources that can help you.

How to Talk About Lung Cancer With Friends and Family

It’s up to you to decide how and when you want to reveal the news of your lung cancer diagnosis. You may need time to come to terms with lung cancer before telling others. When you’re ready, start by talking to the people closest to you.

A person with lung cancer may find that their relationships with their loved ones strengthen or weaken as they continue with treatment. It can be difficult to talk about the many different feelings you’ve had since your diagnosis. Although it may cause conflict, it’s important to have conversations about how everyone involved in your treatment plan feels. Without this open communication, stress may cause rifts in relationships down the road.

If you’re struggling with communication, it may help to speak with a cancer social worker affiliated with your hospital system or a family therapist.

It’s normal to need a little extra help during cancer treatment. You may want assistance preparing meals, completing household chores, and managing bills (both medical and otherwise). If you don’t have people in your life who can offer this extra level of support, consider finding a caregiver. Talk to your health care team for resources on how to find help.

Parenting With Lung Cancer

Parenting can be especially challenging when you have lung cancer. One MyLungCancerTeam member stated, “I can handle the cancer, but when I see my children upset, it tears me apart.”

Guilt is a common emotion for parents with cancer, as are fear, anxiety, sadness, and regret. If you’re having a hard time broaching the topic of cancer with your children, consider involving a family counselor to improve communication.

Working With Lung Cancer

Some people prefer to take a step back from work after lung cancer treatment, and others find that continuing or resuming their normal work schedule improves their self-esteem.

In the United States, individuals with cancer are protected from employment discrimination under the Americans with Disabilities Act. If you decide to continue working throughout your treatment, there are accommodations that your employer may be legally required to make. Depending on your company and role, you may be able to modify your hours or switch to different job duties during your treatment.

Employees in the United States may also be able to take Family Medical Leave if they need to take time off work during treatment.

Disability Benefits

Depending on your circumstances, continuing to work may not be an option. If you have worked jobs for which you paid into Social Security and cannot currently work due to lung cancer, you may qualify for Social Security disability benefits. Furthermore, the two main types of lung cancer, non-small cell lung cancer and small cell lung cancer, are included in the Social Security Administration’s list of compassionate allowances. Having a condition from this list will speed up the process of receiving Social Security disability benefits. If you are approved for disability benefits, you may be eligible to apply for Medicare, even if you are younger than 65.

Financial Burden of Lung Cancer

Lung cancer can cause tremendous financial burdens. In addition to the cost of treatments and health insurance premiums, expenses related to cancer care may include:

  • Rehabilitation or extended care
  • Transportation to and from your treatment center
  • Childcare or eldercare for your dependents
  • Cost of living and potential loss in wages
  • Counseling
  • Hiring help for cleaning or homecare

Health insurance may help cover some of your care expenses, but you may also want to look into additional financial resources. There are several local and national nonprofit and charity organizations that may be able to offer help. You can contact The American Cancer Society or your local United Way office or Department of Social Services for referrals to assistance in your community.

Read more about ways to afford costs related to lung cancer treatment.

Traveling With Lung Cancer

Traveling can provide an escape from the stress of having lung cancer. “Getting ready to take a family vacation with my husband, son, and my son’s five children! I’m really looking forward to it and even bought some SPF 50 T-shirts to protect my surgical site. I am so ready for this,” one MyLungCancerTeam member shared.

Talk to your health care team about any considerations you may need to make when planning a vacation. You may need to schedule around treatments or adjust your plans based on your health needs. Your doctor can also help you understand what kind of arrangements you need to make in case you have a health care emergency at your travel destination.

Talk to your doctor about considerations if you are planning to fly rather than drive. People with lung cancer sometimes experience breathlessness during air travel and require oxygen. Your doctor can let you know if you need to bring oxygen on a flight.

Travel Tips

Below are tips that can make your travel smoother:

  • Bring enough medications for your entire trip, plus extra in case there is a flight delay.
  • If flying, pack your medications in your carry-on luggage in their original packaging so they can be easily identified by security officials.
  • Bring records of your medical information in case of an emergency. You may have this information in your online health portal.
  • Get up and move every hour when flying or on a train to protect against deep vein thrombosis. If driving, make time for rest stops to move your body.

Adapting Travel Plans

Some people with lung cancer find that their previous style of travel no longer works for them. “I think my age and health will end long trips,” one MyLungCancerTeam member wrote. Instead, the member is traveling in an RV to areas within a few hundred miles of home. “We still have lots of fun and hope you will do the same. Adapting makes the paths forward possible.”

Talk With Others Who Understand

MyLungCancerTeam is the social network for people with lung cancer. On MyLungCancerTeam, more than 5,000 members come together to ask questions, give advice, and share their stories with others who understand life with lung cancer.

Are you living with lung cancer? What has helped you? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on January 28, 2022
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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.
Anastasia Climan, RDN, CDN is a dietitian with over 10 years of experience in public health and medical writing. Learn more about her here.

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