At the the Second Annual National Coalition of Oncology Nurse Navigators (NCONN) Conference in December 2010, Matthew Zachary, musician, brain cancer survivor, and founder of the I’m Too Young For This! Cancer Foundation (iy), energized attendees with his session on empowering young adults with cancer. Zachary discussed the status of the young adult cancer movement and iy’s programs and advocacy efforts.
A TRAGIC LACK OF PROGRESS
The National Cancer Institute (NCI) reports that more than 70,000 adolescents and young adults aged 15-39 years (AYAs) are diagnosed with cancer each year. The cancers most frequently diagnosed in AYAs include lymphoma, leukemia, germ cell tumors (including testicular cancer), melanoma, tumors of the central nervous system, sarcoma, and breast, cervical, liver, thyroid, and colorectal cancers.
While the War on Cancer has signifi cantly improved survival rates in pediatric and adult patients, the rates for AYAs have essentially remained stagnant since 1975. Cancer research and treatment has focused primarily on the much larger pediatric and adult cancer populations (AYAs makeup <10% of all cancer patients) and AYAs have slipped through the cracks. The NCI has studied the causes and developed potential solutions for AYA cancer disparities. It attributes the lack of progress in AYA cancer rates to
• Limited access to care and insurance coverage
• Delayed diagnosis of primary cancers
• Inadequate treatment practices and settings
• Poor understanding of the biology and etiology distinguishing the cancers in this population
• Inadequate collection of patients and patient data
• Low numbers of clinical trials and poor participation
• Unique psychosocial and supportive care needs
• Inconsistent treatment and follow-up care guidelines
• Limited emphasis on prevention and early detection.
To address AYAs’ unique cancer concerns, the NCI collaborated with the Lance Armstrong Foundation on the groundbreaking 2006 report Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. The report, along with a 2007 followup, Closing the Gap: A Strategic Plan, provided recommendations for improving outcomes in AYAs across the entire cancer care spectrum, including
• Establish a strong scientifi c foundation to support the biological differences in tumors found in AYAs
• Leverage completed, ongoing, and new clinical trials to obtain knowledge about cancer in AYAs
• Increase healthcare provider awareness of AYA issues by working with professional societies and advocacy organizations
• Facilitate the development of AYA standards for, and availability of, patient navigators and health coaches.
Zachary faced a much different landscape when he was diagnosed with brain cancer. AYA cancer resources were essentially nonexistent, and the NCI was certainly not focusing on the young adult population.
NO ROBOTUSSIN FOR BRAIN CANCER
In 1995, Zachary was a college senior and concert pianist. He had been accepted to graduate school and his dream of composing music for fi lm was in reach. At the start of the fall semester, however, his left hand began to lose its dexterity and eventually it lost all fi ne motor coordination. When he sought help from the campus medical center, his frustrating experience mirrored that of many AYAs.
Young adults frequently endure diagnostic delays because of the population’s low incidence rates of cancer. Healthcare professionals will often attribute potential cancer symptoms to fatigue, stress, or other causes. The campus medical center kept telling Zachary that he did not have a serious condition. At one point, they even gave him the cold medicine Robitussin for his symptoms. He now quips that he started iy with the mission statement, “No Robitussin for Brain Cancer.”
When he was finally diagnosed with brain cancer in December 1995, Zachary learned he had a congenital medulloblastoma (pediatric brain cancer). This brain tumor is classifi ed as a primitive neuroectodermal tumor (PNET) and originates in the cerebellum, which controls balance and other complex motor functions. Most pediatric medulloblastomas are diagnosed in children aged <10 years, so Zachary’s situation was extremely rare.
In January 1996, Zachary had an hour-long craniotomy to remove his tumor, which he described as “the size of a golf ball.” He additionally received 33 treatments of craniospinal radiation, but refused the recommended chemotherapy.
Zachary’s doctors wanted to give him chemotherapy, but in his view the treatment offered a limited benefi t for an unacceptable risk. His physicians told him the chemotherapy would increase his 5-year survival chance by 5% (50% to 55%), but would also increase his risk of developing peripheral neuropathy, a nerve condition that would effectively end his piano playing. Unwilling to give up on his passion, Zachary rejected the chemotherapy and never looked back.
The radiation treatment, however, left Zachary physically and emotionally devastated. At one point, he was taking 17 medications. “I had every [side effect] you could possibly imagine,” Zachary said. With the dearth of resources and support groups available to AYA survivors, Zachary was lost and unsure how to move on with his life. “I looked different in the mirror; I was impotent for 2 years; I didn’t understand how to talk to people,” Zachary said.
Zachary was eventually able to rediscover and redefi ne himself through his music. He rehabilitated his left hand and performed a concert only 1.5 years after his cancer diagnosis. Starting with that performance, he renamed himself Matthew Zachary (Zachary is his given middle name, not his last name), saying, “I couldn’t deal with being myself.”
Renaming himself and restarting the piano allowed Zachary to regain control over his life. “I was able to take back what cancer took away. I could own what happened to me because I fi nally had a legacy— I was able to play piano again.” Zachary eventually performed a series of concerts and released several albums. He played 2 songs at NCONN 2010, both of which earned standing ovations. Now married with twin children, Zachary shares his story to raise awareness of disparities in AYAs with cancer. He started iy to help AYAs avoid the isolation and helplessness of his cancer experience.
During his treatment, Zachary realized the cancer care system was ill-equipped to address AYAs’ unique needs. His pediatric oncologists were used to treating children, so they would speak to his parents instead of him. Additionally, the atmosphere and lack of peer support in the pediatric facility left Zachary feeling extremely isolated. “I [was] in a room with squeaky toys [and] cows on the ceiling— not okay!” Zachary told NCONN attendees.
Zachary founded iy in 2007 to help create a new reality for AYAs with cancer. iy ensures young adults affected by cancer can access the resources and support they need. The progressive enterprise tailors its message, content, and events to the social and cultural values of young adults. Often infusing Zachary’s irreverent humor and love of music, iy’s catchphrase is “stupid cancer,” which Zachary devised by wondering, “What would Homer Simpson say if he were diagnosed with cancer?” To support AYAs, iy provides both offl ine and online resources.
iy hosts community outreach events called “Stupid Cancer Happy Hours” to allow AYAs to have fun with their peers. Past events include film screenings, book signings, tweetups, bowling nights, scavenger hunts, golf outings, bar crawls, weekend retreats, roofdeck parties, wine and cheese events, BBQ fundraisers, and Halloween costume balls.
Stupid Cancer Boot Camps
“Stupid Cancer Boot Camps” are educational workshops that focus on specifi c issues relevant to AYAs with cancer. The events are often conducted in collaboration with local cancer centers or franchises of national cancer organizations. Previous Boot Camps include Progress/Gaps in Young Adult Biology; Clinical Trials in Young Adults; Social Media and Health Technology Advocacy; Employment, Legal and Disability Rights; Navigating Health Insurance; Fertility, Relationships and Sexuality; and Grassroots Activism and Legislation.
The OMG! Cancer Summit For Young Adults
This international conference brings together AYAs affected by all cancers. The gathering unites >20 advocacy, research, and support groups, and fosters an AYA global support network. NCONN will be speaking at the 4th Annual OMG! Summit (www.omgsummit. org/2011), which will take place in New York City on April 16 and 17, 2011.
The Stupid Cancer Show
The Stupid Cancer Show is a live talk radio Webcast that gives a voice to the young adult cancer movement. Zachary co-hosts the program with young adult cancer survivor Lisa Bernhard, iy’s vice president of Marketing and Media Development, and formerly an Entertainment Correspondent for FOX News and Deputy Editor of TV Guide. New episodes air live on Mondays at 8 pm Eastern Standard Time.
The show covers cancer issues related to multiple topics, including politics, healthcare, the environment, social media, entertainment, and education. Some of the previous episode titles were “Breast Cancer and the Environment,” “Stupid Lung Cancer,” “Advocacy Innovation,” and “Showtime’s The Big C.” NCONN’s president, Sharon Francz, and vice president, Rebecca Trupp, were guests on The Stupid Cancer Show’s November 1, 2010, episode, entitled, “Insurance and Navigation.” This broadcast and all other previous shows can be downloaded on the program’s Website.
iy’s Website aggregates the available resources for AYAs and provides an online support network. The “How Can We Help You” directory on the home page provides links to resources offering social, fi - nancial, legal, and employment support. The ongoing conversations in “The Stupid Cancer Forums” allow AYAs to communicate and support each other. “The Stupid Cancer Blog” provides continuous updates of the young adult cancer movement. The site’s “Get Involved” section allows AYAs to start participating in iy through a mailing list, Facebook, Twitter, iTunes podcasts, wristbands, local iy chapters, and more.
Despite its brief existence, iy already boasts an impressive list of achievements:
• Shortly after its 2007 launch, Time magazine named iy’s site one of the “50 Best Websites”
• iy will soon have >10,000 Facebook friends
• The Stupid Cancer Show has >500,000 listeners
• Fox News named iy’s The Stupid Cancer Blog one of the “Best Health Blogs of 2010”
• Actor Zac Effron has become a spokesperson for iy.
Beyond its own success story, iy’s advocacy has contributed to tremendous advances for young adults with cancer:
• The Journal of Adolescent and Young Adult Oncology (JAYAO) is launching this spring. This groundbreaking publication will foster interdisciplinary collaboration on research and education in AYA oncology. JAYAO’s editor-in-chief, Leonard S. Sender, MD, is also the chairman of the board of directors of iy. The journal’s content will include original peer-reviewed articles, review articles, highlights of clinical trials relevant to AYAs, case studies with AYA-impact enhancement, advocacy group spotlights, pharmacology highlights, editorials and perspectives, provocative roundtable discussions, and news bites.
• iy is working to create a continuing medical education program in AYA oncology that would be institutionalized through the NCI
• Support is growing for the young adult cancer clinic model, whereby in addition to pediatric and adult cancer hospitals, there would also be AYA hospitals
• The International Charter of Rights for Young People With Cancer is a patients’ bill of rights for young adults with cancer. The Charter hopes to establish an international standard of cancer care for AYAs. You can sign the charter on the organization’s Website.
• The Leukemia and Lymphoma Society now offers a non–disease specifi c young adult support platform
• Advances in genomics and stem cell research are exploring the contribution of biological factors to the outcome differentials in the AYA versus the pediatric and adult populations. The young adult cancer movement supports increased tumor banking to support research in these fields.
HOW CAN NAVIGATORS HELP?
Zachary’s discussion on epowering AYAs with cancer illustrated a clear role for nurse navigators. “Navigation is the cure for Robotussin for brain cancer,” Zachary joked. He meant that navigators are on the frontlines and can increase education and awareness of cancer in young adults. They can help ensure that cancer is never overlooked as a possible diagnosis.
Beyond strictly medical care, navigators can also address the tremendous psychosocial issues that plague the AYA cancer population. “Young adults have issues that suck when you don’t have cancer—dating, fertility, sexuality, intimacy, relationships, insurance, [and] careers…Slap cancer [onto] that and you’ve got a real nightmare,” said Zachary. Either through direct aid or referrals, navigators can connect AYA patients to the support and services they need.
NO YOUNG ADULT LEFT BEHIND
As Matthew Zachary might say, the situation for AYAs with cancer is still, “Not OK.” Despite some improvements, AYAs still face disparities in survival rates and cancer treatment. Eliminating these disparities will require a comprehensive effort from the oncology community. For its part, iy will continue to ensure no young adult is left behind to fi ght “stupid cancer” alone.