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AYA Cancer – What You Need to Know!

Adolescent & Young Adult Cancer

Each year in the United States approximately 82,000 adolescent and young adults (AYAs) put their dreams on hold while enduring debilitating treatment for cancer in a healthcare environment that does not adequately address their unique and difficult challenges. Treatment for AYAs is usually more aggressive than that of their adult counterparts with debilitating and often long-term side effects.

With average treatment lasting two years, over 160,000 promising lives are put on hold each year. In addition to newly diagnosed AYAs, many childhood cancer survivors become teens with either secondary cancers or debilitating late effects of their earlier treatment adding thousands more to our population base.

Today, the risk of being diagnosed with cancer for AYAs age 15-40 is 1 in 56 as compared to 1 in 71 in 1975. For females, that increases to 1 in 47 and 1 in 43 for non-Hispanic white females (source, Archie Bleyer).

Cancer is the most common cause of non-accidental death for AYAs. Unlike many adult cancers, only a very small proportion of AYA cancers are caused by known environmental or inherited factors.

Not yet fully matured adults and no longer children, teens and young adults are often caught in a health care void – somewhere between the juvenile décor of a pediatric hospital and the quiet, harsh reality of an adult clinic. They fit neatly into neither. 13thirty Cancer Connect is dedicated to bridging this gap in service.

Need

Over the years, childhood cancer has received much needed attention with regard to treatment and cure but three times more people are diagnosed with cancer within the second 15 years of life than in the first 15 years. Their needs have been overlooked.

Research and age appropriate services for this population have lagged miserably leading to poor clinical outcomes and diminished quality of life for teens with cancer.

Because our health care systems have traditionally focused on either pediatric or adult medicine, teens and young adults are caught in a difficult void without the advantage of cutting-edge research gains or age-appropriate resources and support.

Psycho-Social Challenges

Adolescence is a difficult transition, with its physical, social, emotional, and cognitive changes.  With more developed abstract reasoning, teens think deeply about issues like fairness, justice, and individual rights, often leading to rejection of parental controls, challenge of societal norms, and a strong need to be “an individual.” Still young, however, teens need to “fit in”, to be part of a peer group that shares similar values and social behaviors.

For healthy teens, this transition is difficult. Cancer presents unique psychological, emotional, and social challenges for teens intensified by the sense of isolation experienced by most.

Teens are often abandoned by their peers who don’t know how to cope. Long absences from school and lack of social activity compound the difficulties.

Limited opportunities exist for teen patients to form new peer relationships as much of their treatment is often provided at outpatient facilities.
Teens with cancer suffer from poor self-image due to disfiguring treatment, decreased self-confidence at a time of emerging independence and autonomy, and diminished hope for a productive and positive future.

Young adults face many of the same challenges as teens but must deal with others like career and employment issues, infertility and relationship problems.

Most conventional support services do not adequately meet an AYA’s psychosocial needs. When treated by pediatric clinicians, discussion about treatment and prognosis is often directed to parents rather than the teen, disempowering the teen from being actively involved. For young adults, most support groups are comprised of much older adults who have their own difficult, but very different, challenges. Difficult issues such as sexuality and end of life are often not broached for fear of burdening the AYA patient or because of the clinician’s discomfort. When treated by adult practitioners, AYAs often do not receive the nurturing and support they desperately need and may be used to if treatment began in the pediatric setting.

Family Challenges

Families of teens and young adults are also challenged. Open communication, trust, and respect are difficult at best for parents. When cancer colors the picture, these challenges are magnified.  Navigating health care systems and assimilating medical information while trying to care for their teenager is overwhelming. A parent’s stress has direct impact on teens who often try to protect their parents from additional pain. Siblings also struggle, having no supportive outlet for myriad emotions. Consequently, opportunities for shared experience and cherished time are often missed for families and teens alike.
Medical Outcomes

Medical Outcomes

The clinical picture for AYAs with cancer is no brighter than the psychosocial one. In the last two decades, efforts to cure childhood cancer have reaped significant progress. Thankfully, many common childhood cancers now have survival rates of 75% – 80%. The same improvement in survival has been realized for many adult cancers.

Unfortunately, the same is not true for adolescents and young adults. Striking data show that mortality from cancer peaks between the ages of 15 and 25 with many adolescent cancers having survival rates of only 50% or less. Survival rates for this age segment have shown less improvement since 1975 as compared to other age groups.

AYAs also face an increased risk of secondary cancers and serious health issues as a result of their treatment. Why are AYAs at such high risk?

Studies suggest that teens and young adults are often diagnosed late, after the disease has advanced. A sense of invincibility often keeps teens from reporting abnormal pain or body change and parents, who are no longer checking their children’s bodies, do not see changes.

Pediatric professionals, unaware or untrained about early cancer signs in teens, may incorrectly diagnose and consequently mistreat potentially serious symptoms. Another hypothesized reason for the lack of improvement is lack of participation in clinical trials. Since Nixon declared the war on cancer in 1970, research efforts have focused on childhood cancer and those of older adults. AYAs have been dramatically under-represented.

It goes without saying that human life cannot be equated to business profits or return on capital investments. However, the debilitation or death of thousands of bright, talented, and motivated teens and young adults in whom our communities have made significant emotional, educational, and financial investment represents a staggering loss of potential societal contribution. We must find a way to stir the collective consciousness of all who are in the position to make a difference.

History

“If you have learned anything from me through all of this, do something with it to make a difference – to make things better.”

These words spoken by a dying 19 year old girl to her mother just days before her death became her last request and her lasting legacy for all teens with cancer and inspired the establishment of 13thirty Cancer Connect, Inc., initially named Melissa’s Living Legacy Teen Cancer Foundation.

Organizational Overview

13Thirty Cancer Connect, Inc. is a registered 501 (c) (3) non-profit organization established in 2001 following the death of Melissa Sengbusch who was 19 years old when she died of acute myeloid leukemia. Since its beginning, first called Melissa’s Living Legacy Teen Cancer Foundation, 13Thirty has become an internationally known and respected leader in the field of adolescent and young adult (AYA) cancer because of our strong passion, clear vision, and steadfast commitment to a singular focus – teens and young adults with cancer.

Unlike many other cancer support organizations, we concentrate our efforts and resources on a targeted national problem that affects over 81,000 young people in the United States each year. As Melissa asked of her mom, we are making a difference. We are making things better for teens and young adults with cancer around the world.

How it All Began

When Lauren Spiker, our Founder, established Melissa’s Living Legacy, very little attention was being paid to AYAs with cancer. She began asking for help in the community where Melissa lived and was treated, Rochester, NY. She was met with great sympathy but little financial support. Early efforts were personally funded with Lauren continuing to work full-time while also getting the fledgling organization off the ground. The first project was developing a website designed specifically for teens with cancer. With no substantial funding source, Lauren sought pro bono services which were offered by a local web development company. From the beginning, the perspective and advice of teens informed all new resource development and Lauren met with small groups at her home or at borrowed community locations like the Ronald McDonald House .

While the website was still in development, Lauren received a fortuitous phone call one day at home from Dr. Archie Bleyer, the newly appointed chair of the Adolescent and Young Adult Committee of The Children’s Oncology Group (COG), a National Cancer Institute-supported cooperative of approximately 5,000 pediatric cancer researchers from about 250 hospitals across the United States. Dr. Bleyer had heard of the website project from a local doctor, Dr. David Korones, who suggested that Archie give Lauren a call. That unexpected call led to a strategic partnership with COG resulting in shared funding for 5 years, an instant distribution channel and co-branding of the website. This partnership launched Melissa’s Living Legacy unto the national scene with a small group of others who had begun to recognize the unmet needs of teens and young adults with cancer.

The Teens Living with Cancer (TLC) website went live in September, 2002 and was the first web-based resource for this vulnerable population.
For the next few years, Lauren continued to promote the website adding new content and functionality. By 2004, the TLC website was listed as an important resource on the National Cancer Institute’s website. In 2005, with a grant from the Lance Armstrong Foundation, Lauren worked with a group of 5 local teens to create Cancer 101 – Straight Talk from Teens, an interactive CD-ROM featuring the personal perspective of teens with cancer on a variety of topics – side effects, peer relationships, dealing with parents, school, etc. Cancer 101 was also linked directly to sections of the TLC website that addressed these issues and was sent to hundreds of teens across the country free of charge.

In 2006, the Lance Armstrong Foundation (LAF) established the LAF Young Adult Alliance with the goal of heightening awareness of AYA oncology. Melissa’s Living Legacy was invited to be a charter member and the first meeting, with only about 20 others, was held. Together with the National Cancer Institute, an AYA Progress Review Group was formed to identify key issues and suggest initiatives to bridge the gap in services for AYAs. As this illustration shows, the world was not yet paying much attention but we had a seat at the table with the few enlightened people who were.

Slowly and steadfastly, we continued to find ways to meet the psychosocial needs of teens with cancer. In 2006, The Road I Followed, an end of life resource for teens, was created with memorial funds generously directed from the families of two of our teens – Charlie Cote and Jon Ozimek. This resource was distributed throughout the US and, like Cancer 101, was hailed as significant and ground-breaking.

In 2008, an article on teens and young adults with cancer published in the Wall St. Journal noted us as a resource. By this time, we had begun to raise funds through two special events, the Teens Tee-Off Fore Teens High School Golf Tournament and Journeys, the annual Celebration of Living. In 2009, with a large two-year grant from the Greater Rochester Health Foundation, we finally assumed overhead expense and moved into our first home on Elmwood Ave., Rochester, NY, on the Al Sigl Community of Agencies campus. We were also able, for the first time, to hire staff and the Teens Living with Cancer (TLC) program grew. The rest, as the saying goes, is history!

Mission, Vision, Values

The MISSION of 13-Thirty Cancer Connect, Inc. is to help adolescents and young adults (AYAs) impacted by cancer live their very best lives – today!

  • Our resources help AYAs enhance their coping skills and self-esteem by building satisfying peer connections, learning to self-advocate, and developing effective self-management tools for long-term health.
  • A comprehensive continuum of support (from diagnosis and treatment to healthy survivorship or if necessary, end-of-life) helps AYAs with cancer successfully transition through each stage of their cancer experience.
  • We advocate strongly for improved delivery of medical and educational services through clinician education initiatives and outreach to schools and universities.
  • Together with our strategic partners, we work to increase access to age-appropriate care for all AYA patients and survivors with concentrated focus on improving survivorship (early detection, health maintenance and follow-up care).

Our VISION is that every teen and young adult with cancer “connects” with 13thirty – a better way for AYAs
We strive to incorporate our VALUES into every program and each personal interaction:

  • Tender Loving Care – Compassionately nurture each person’s spirit with warmth and kindness.
  • Respect – Preserve the dignity of all by valuing each person’s inherent worth, unique needs and capacity for self-determination.
  • Relevance – Provide meaningful resources congruent with our mission and values by staying abreast of medical, social and technological trends.
  • Honesty – Engender trust by fostering open communication, being fair and truthful in all transactions, and adhering to the highest standards of professional integrity.
  • Safety – Create an environment where people gathering in friendship feel physically protected, emotionally safe, and psychologically unburdened.
  • Stewardship – Continually improve our business practices in order to manage our resources wisely and sustain the organization’s mission.