Every year, about 70,000 adolescents and young adults ages 15-39 are told they have cancer. That’s one every eight minutes. Lisa Bernhard, former Fox News Channel entertainment reporter and TV Guide deputy editor knows all too well what getting a cancer diagnosis feels like. At the age of 29, she became a breast cancer survivor.
These days, Bernhard is an advocate for young cancer survivors with the I’m Too Young For This! Cancer Foundation. Along with I[2]Y founder Matthew Zachery, Bernhard co-hosts and co-produces The Stupid Cancer Show, an award-winning international talk radio show, now in its sixth season. The show draws high profile guests ranging from A-list celebrities to top health officials and has been heard by more than 520,000 listeners.
I sat down with Bernhard to find out more about the I[2]Y organization and how they are supporting and empowering young cancer survivors.
EmpowHER: The I[2]Y brand is irreverent, hip and edgy. How has the I[2]Y brand become a lifestyle?
LB: We very much speak the language of our Gen X and Gen Y constituency. I[2]Y isn’t just an organization, we’re a movement. Our message is loud and clear. When it comes to cancer issues that affect our age group, we want everyone to know the status quo isn’t okay and we are here to change it. We are at the forefront of the young adult cancer culture; foremost, the organization gives permission for young cancer survivors to rebel against their disease and that is incredibly powerful and empowering.
Too many of us have a similar story. Our cancer went undetected or misdiagnosed for too long because we were too young to have cancer. We also have many unique challenges to deal with because of our age. Many of us fall between the cracks because we are neither pediatric patients nor older adults. So we are all about giving a voice to young cancer survivors regarding their quality of life, care and how to move forward with the disease. The art of survivorship is all about how you chose to get busy living.
EmpowHER: What are some of the unique challenges young cancer survivors face?
LB: They fall primarily in two areas: lifestyle and care. Dating, sexual relationships and infertility are big issues that are unique for our age group. For example, not enough doctors are counseling us to save our eggs or sperm prior to treatment because there is a high probability the cancer treatment could make us infertile. That’s not okay, and it’s downright devastating to find that out after treatment when it’s too late.
Insurance issues are also huge for us. The new health care bill has fixed some of that, but there are other insurance and medical care issues for us to overcome. Recently, a colleague of mine who was diagnosed with metastatic sarcoma and approved for a clinical trial was turned away from a New York City cancer treatment center because at age 25 there was no bed for her in either the pediatric or adult units. Too many of us are falling through cracks and it has to change.
EmpowHER: Music and Arts play a key role in the organization. Much of this, of course, has to do with founder Matthew Zachery who is an accomplished concert pianist. How does I[2]Y use creative expression to change lives and the way people perceive the disease?
LB: Creative expression allows people to define themselves and their illness in ways that can touch others on a granular level and it is the primary way we connect with our supporters and give a voice to our message. We have done compilation CDs with artists who are all young cancer survivors. Many of them have written about their experiences in lyrics. We rely on social media, videos and documentary shorts to tell our collective story, build a community and share resources and it has proven powerful. We feel creative expression is also very cathartic and a positive way to deal with some difficult issues and in the process provide a two-way conduit to share our experiences, or even just to vent.
EmpowHER: Back in 1995 when Matthew was diagnosed with pediatric brain cancer, the Internet was in its infancy, which made it difficult for cancer patients, like him, and his caregivers to connect to resources. How is the social media evolution changing cancer advocacy, and what is I[2]Y doing to change the access landscape ?
LB: The biggest and most obvious thing is the sense of community. Allowing cancer survivors and their caregivers to connect with active dialog has opened up a world of information and resources that were previously hard, if not impossible to find. It helps to know you aren’t going this alone. We just broaden our community with the Stupid Cancer Forum where people can get helpful information, and have questions answered about intimacy and many other relevant topics. Having a place where people can find each other and drill down on a specific topic allows users to have the information to ask their health care providers intelligent questions that may otherwise never get discussed.
EmpowHER: What resources does the organization offer to young people?
LB: Besides being a fun, cool place to hang out, we do have a resource page on our website where people can go for specific information about our sister organizations. Each year, we also host a two-day OMG Summit, where we bring in experts to discuss topics relevant to our lives. This year it will be held in April in New York City.
EmpowHER: The latest statistics tell us between 1998-2000, survival rates for adult cancer patients increased by roughly four years. Why hasn’t there has been improvements in the 5-year survival of young adults since 1976?
LB: According to research done by the National Cancer Institute, there are several factors that might account for lack of improved outcomes for our age group, including limited access to care and insurance coverage, delayed diagnosis of primary cancers, too few clinical trials and limited emphasis on prevention and early detection. Anecdotally, I can tell you what we hear is cancer diagnoses are coming late. As Matthew often states, he was given Robitussin for brain cancer. I also believe adolescent and young adults have unique psychosocial and supportive care needs, which is why we are all about survivorship and working through and beyond the diagnosis. In many ways, I[2]Y is a human rights organization and we tend to collectively bond on that level.
EmpowHER: You co-host The Stupid Cancer Show with Matthew Zachery. What is the overarching goal of the show?
LB: We tackle hard-hitting issues from politics, health care and the environment to social media, entertainment and education. Our guests really make the show. It is sometimes irreverent and always edgy because we want to challenge the status quo and help young adults fight cancer so they can get busy living. The show is also for anyone who wants to stay healthy, with topics such as how to avoid non-carcinogenic materials in your home.
The radio show is webcast live from Tribeca every Monday night at 9pm/6pm (ET/PT) at http://www.blogtalkradio.com/stupidcancershow or is available for download on iTunes.
For more information about I’m Too Young For This! Cancer Foundation, visit http://i2y.com.
Lynette Summerill is an award-winning writer who lives in Scottsdale, Arizona. In addition to writing about cancer-related issues for EmpowHER, she pens Nonsmoking Nation, a blog following global tobacco news and events.