In follow up to a recent blog I posted, Is the Face of Lung Cancer Getting Younger?, I have been exploring this arena of support for young adults with cancer, which is typically considered to be patients ages of 15 to 39. They represent a group who oftentimes get lost in the cracks of the cancer abyss with limited resources, inadequate support for their individual needs, and a lack of awareness from the world surrounding them.
Young adult cancer adds about 70,000 new victims every year in the US. That is about one every eight minutes! Shockingly, in contrast to younger and older cancer patients, survival rates for young adults have not improved since the 1970’s. In response to these statistics, this population of patients are clearly banding together to fight and their voice is growing louder. Allow me to share with you a few of the excellent resources I found.
With a focus on awareness, the organization 15-40 connection, strongly promotes early detection. Their website offers a “Learn From Me” section which includes pages of people within this age group sharing their stories and what they learned throughout their cancer journey. Each story includes the person’s picture and diagnosis, and the site allows you to navigate through the stories by age, type of cancer, and lesson learned.
There are multiple organizations who have worked hard to put many resources all in one location for this particular age group of patients--Stupid Cancer is one of these organizations. According to their website, they are “the largest charity that comprehensively addresses young adult cancer through advocacy, research, support, outreach, awareness, mobile health, and social media. Our innovative, awardwinning, and evidencebased programs and services serve as a global bullhorn to propel the young adult cancer movement forward.” They have a huge resource directory quickly linking the user to other helpful organizations, financial resources, retreats, camps, and message boards among many others. The organization even has their own radio talk show available by podcast and an online store.
Critical Mass is another site which offers a unique aspect they title “mission control,” which allows the user to enter their zip code, and in turn, organizes resources available to them by type: practical, medical, health education, money, emotional, social, school, work, legal websites, contacts, etc.
The SAMFund, while offering grants and financial assistance, is also a wealth of information for young adult cancer patients all in one spot. They offer a “finance 101 toolkit,” including information regarding medical bills, insurance coverage and prescription assistance, along with webinars such as “strategies for reducing medical debt."
A few other favorite resources I found was the "Young Adult" section on the CancerCare website, which provides a 15-week young adult caregiver online support group specifically for spouses/partners. The group is led by an oncology social worker, and caregivers have the opportunity to provide support to each other and share resources and information. The site also has webcasts and podcasts on various topics focusing on young adult issues such as fertility, sexuality, and intimacy.
Another is a nonprofit organization known as 3 Little Birds 4 Life grants wishes for patients who are ages 18 to 40, any type of cancer at any stage.
An excellent opportunity for this ambitious age group is Cancer to 5K, which is a free, 12week training program designed to introduce or reintroduce cancer survivors to physical activity. The program provides survivors with the professional training, coaches, encouragement, and support necessary to complete a 5K (3.1 mile) road race, regardless of their current cancer treatment status or fitness level. If no team is located close to the participant they have an “At Home” program still offering oneonone coaching in which workouts are sent via email.
Being more familiar with the resources available to this unique, population of patients, helps me to feel more prepared to help my younger patients navigate their lung cancer journey. I hope your patients find these resources helpful as well.