Unique challenges become permanent fixtures in the minds of young adults who receive a diagnosis of a life-changing disease, but can change through advocacy support.
IN THE UNITED STATES last year, roughly 30,000 people under the age of 50 were diagnosed with lung cancer, according to an article written by Lynne Eldridge, M.D., who is a medical journalist and lung cancer advocate.
Research is ongoing as to why younger adults get the disease. Hereditary, genetic and biologic factors may all play roles. Sometimes, these diagnoses bring with them different treatment protocols than those of older adults.
Being a young adult with lung cancer comes with unique physical and psychosocial needs that many patients feel are not adequately addressed. A recent survey of LUNGevity’s patient communities yielded insight into the unmet needs of younger adults with lung cancer.
Many of these patients reported feeling isolated because of their age, and some said they were stigmatized for having lung cancer. Others struggled with their loss of independence. The most commonly reported issues were related to fertility, employment, emotions, finances, legal concerns, children, disability and dating/ relationship issues.
In 2016, Amanda Nerstad was diagnosed with stage 4 non-small cell lung cancer. She has ALK rearrangement, which is an abnormality in one of her genes. As a young mom with no smoking history, her diagnosis was a complete shock for her and her family.
“I am always worried about my children and financial security for our family,” Nerstad said. “I’m trying to ‘be normal.’ I’m too young to stop working, but it’s weird to continue a career path.”
Nerstad chose to be up front with her children about her disease, even turning the experience into a positive by allowing them to fundraise with a lemonade stand to help raise money and awareness for lung cancer.
Similar to Nerstad, other patients in the lung cancer community wonder if they should continue to invest in their career or retirement plans when their futures are so uncertain or if they should retire early. Cancer and Careers provides expert advice, interactive tools and educational events to help patients understand their legal rights, file for disability and answer workplace questions.
Other younger patients seek information on reproductive and sexual health, a topic that isn’t always discussed in their doctor’s office. The SamFund offers a page of resources specifically for family building.
To help with emotional needs, patients desire in-person support groups with people who are going through the same experience. LUNGevity provides online communities and free peer-to-peer mentoring matches for patients and caregivers.
Patients who are considering participating in a clinical trial can connect with a volunteer Clinical Trial Ambassador to ask questions about what the experience is like. Personalized matches are made by diagnosis type, stage, gender and age.
LUNGevity also hosts the annual National HOPE Summit in the spring. The 2018 meeting took place April 27-29 in Washington, D.C. The three-day survivorship conference is a gathering spot for patients, survivors and caregivers. During the conference, they have the chance to attend meetups and breakouts that address the unmet needs of younger adults with lung cancer. Travel grants, although available in limited numbers, are available to patients attending for the first time.
Adolescent and young adult cancer advocacy groups, such as Stupid Cancer, work to address many of the aforementioned unmet needs. Young adults fighting cancer may feel isolated and unsupported in their communities. It’s up to advocates and advocacy organizations to help address these unmet needs to provide a better quality of life and greater chance of survival.
KATIE BROWN has worked in nonprofit and patient advocacy for over 15 years. She is the vice president of support and survivorship programs for LUNGevity Foundation, trained in patient navigation with Dr. Harold P. Freeman Institute in New York City and oncology patient navigation through the George Washington University, and is certified by the Academy of Oncology Nurse & Patient Navigators as an oncology patient navigator. She is also LUNGevity’s social media strategist and author of the books, Co-surviving Cancer and Navigating Advocacy.