Ask the Advocate: How to Speak to Others About Lung Cancer
Lung cancer is the second most common cancer in the United States. Experts estimate that there will be about 238,340 new cases of lung cancer in 2023.
If you receive a lung cancer diagnosis, you’ll likely have many questions and find yourself needing support from others. It can be hard to find the words to ask others for the help you need as you navigate your lung cancer journey from diagnosis through treatment.
To learn more, we asked Sara Belton, PhD, RN, for advice on explaining a lung cancer diagnosis, asking for support, and engaging in self-advocacy. Belton is the nurse navigator for Providence Saint John’s Health Center’s Lung Screening Program at the Cardiothoracic Outpatient Clinic in Santa Monica, California.
A nurse navigator advocates for patients, commonly those with cancer, by helping them manage care plans, communicate with clinical care staff, and find support through treatment.
This interview has been edited for brevity, length, and clarity.
It can be very difficult for people to ask for help, especially for those who are used to being in charge or taking care of others.
Students who make it into medical school pay a lot of money for the privilege of eventually becoming a doctor, with medical school students in the class of 2019 graduating with an average of $201,490 in student debt, according to the Association of American Medical Colleges as reported by Nerd Wallet. That’s an increase of 2.5% from 2018.
Some cancer survivors may not want to ask family or friends or work colleagues for help due to personal or cultural reasons. In this case, the cancer care team or the health center can be a resource and should have social workers or nurse navigators who can talk with the survivor about their challenges and help them access needed support.
People who care about you likely want to help and will offer. If you don’t know what to say or what to ask when a loved one or colleague offers help, consider asking for assistance with daily activities like cooking, cleaning, and running errands. For those asking to help you through your treatments, ask for a ride to chemotherapy or radiation appointments.
It’s also important to ask for breaks from cancer and make time for other activities. Ask a friend or family member to go with you to a park or out for a coffee, watch a movie at home, or do another favorite activity from “before cancer.” It can be a huge morale boost.
Your cancer care team will be made up of a diverse group of providers who are all individuals, but who work together to provide you with the best care options for your situation. Some providers may specialize in one care area, such as a surgeon, and others will have a broader scope of practice, such as nursing or social work.
Some will have had personal experiences with cancer, and this often motivates them to work in this area. I have cancer survivors in my immediate family, and it has influenced the care I provide as a nurse navigator, as I have seen both the clinical and personal sides of cancer care. I think it has made me a more empathic provider, and I hope it has helped the survivors with whom I have worked.
Remember it’s OK to ask a doctor to slow down when they are talking or to repeat or provide more information or say things in a different way. Don’t be afraid to ask for what you need. It’s also OK to ask for a second opinion or to ask for some time to make treatment decisions.
Receiving a cancer diagnosis can be very overwhelming and scary, and you may need some time to process it. If there is a medical reason why a care provider would want you to make a treatment decision more quickly, they should express that to you, so you can understand why time may be an important factor in your treatment.
This is a challenging question. Leave provisions for cancer treatment and care will vary from employer to employer and state to state. You will have to check with the employer on their policies and practices. Your manager, union, employee assistance program, or the human resources department would be the first contacts regarding this.
Some people may be very fearful to let the workplace know they are facing cancer, but there is some federal legislation in the U.S. that may help. I would suggest connecting with someone at the workplace first, but if you are concerned about negative impacts, the American Cancer Society and the U.S. Department of Labor (DOL) websites have toll-free phone numbers you can call for advice. This would guarantee independent and confidential advice, free of charge.
Federal legislation called the FMLA, or Family and Medical Leave Act, may protect your job if you need to take unpaid leave. Under this legislation, your job is protected, your health insurance will be continued, and you are protected against retaliation, such as firing, by your employer.
Your employer may need additional documentation and time to process this leave, and your cancer care team can help you with providing this to them. Some states will also have their own state-level FMLA legislation.
The Americans with Disabilities Act (ADA) has some provisions for cancer survivors, but cancer is not always considered a disability as it is dependent on the survivor’s needs at the time.
The ADA does legally require employers to provide “reasonable accommodation” for employees with disabilities, but the accommodations also cannot cause “undue hardship” for the employer. This means that it is essentially a balancing act between cancer survivors and employers to find workplace accommodations and solutions that will work for everyone.
Ask your care team for additional assistance and resources.
Getting diagnosed with lung cancer can be distressing. Many times, it can be hard to ask for the help that you need.
Remember that it’s OK to ask your care team for all the information you need in a way that you can understand it. It’s also perfectly acceptable to seek a second opinion at any point in your lung cancer journey.
It’s important to lean on loved ones for help with daily activities like cleaning the house, running errands, and taking you to doctor’s appointments. Make sure to also ask loved ones to engage in other enjoyable activities that aren’t related to cancer.
Finding support and learning how to advocate for yourself can make managing your care and coping with the quality of life effects of lung cancer much easier.
Sara Belton, PhD, RN, is the nurse navigator for Providence Saint John’s Lung Screening Program at the Cardiothoracic Outpatient Clinic. Sara has worked in many areas of healthcare including clinical health services, global health research, government policy and planning, health administration, and academia.
Last medically reviewed on March 21, 2023
