An Update on Planet Cancer

by

Heidi Adams

Founder and Executive Director

Planet Cancer

[Editor's Note: Heidi is a 10-year-survivor of Ewing’s sarcoma. A tireless advocate of young adults with cancer, she is also the author of “Here and Now: Inspiring Stories of Cancer Survivors” (Avalon 2001). She swears the most rewarding and most difficult thing she’s ever done—fight with cancer included—is being the proud mom of 15-month-old twins, Mason and Norah.]

A Community of Young Adults

Planet Cancer is a one-of-a-kind, occasionally raucous, often loving community of young adults with cancer in their 20s and 30s. The whole idea for such a community started as a nagging thought in the back of my head during my year of treatment, usually on the heels of the lonely thought, “I can’t be the only one.” Meaning, “I can’t be the only 26-year-old in the whole world going through this god-awful treatment for Ewing’s sarcoma.” Although, after I learned how rare sarcoma was, I would have been happy to meet anyone near my own age with cancer.

I just wanted to talk to someone else who knew what it was like to be considering death when I should have been considering my date options for Friday night. Who understood the explosive dynamics of moving back in with my parents after living on my own for years. Who was also forced to consider the loss of a future family before even thinking about having one. And so on.

Several years after I finished treatment, I met Dave Marsh and Barbara Carr of the Kristen Ann Carr Fund, which focuses on funding sarcoma research and young adult initiatives. With their encouragement and seed funding, I founded Planet Cancer in 2000 to build this community of young adults with cancer in their 20s and 30s, bringing them together to support each other.

Today, Planet Cancer provides several avenues for young adults to access information and critical peer support:

Online Community

The Planet Cancer website provides a unique voice for young adults with cancer: fresh and irreverent, but always honest. The site offers information, connections, entertainment and support. The heart of the site is the Forum, a thriving online community with nearly 1,000 registered users, where young adults around the world communicate about what's on their minds—from death or fertility issues to dumb things people say.

Weekend retreats

Our weekend retreat program brings together young adults for recreation and personal exploration with their peers, helping them forge connections that will sustain them as they move forward with their lives, in or out of treatment.

Spreading the word

We write articles, attend trade shows, give speeches and, in general, talk to anyone who will listen to raise awareness about the unique needs and issues of young adults. We actively seek to work with and connect all organizations involved with young adults, in the interests of sharing best practices and avoiding duplication of effort.

Since founding Planet Cancer, I have learned that my personal experience was not unique. Many young adults slip into a no-man's land on every front: medical, psychosocial and financial. Although the issues facing them are quite particular to their age and stage of life, young adults with cancer have never been recognized as a distinct demographic group. Instead, their care and support has been fragmented between the adult and pediatric oncology communities, leaving them without a "home" where attention is focused on their specific needs. This situation has occurred despite the fact that more than 70,000 young adults are diagnosed between 19 and 40 every year—more than eight times as many as patients under age 15, an age group that has its own medical specialty.

Research on cancer in young adults, although limited, is disturbing. A recent analysis of SEER data shows that the strides made in cancer treatment in the last 30 years have completely bypassed young adults. The improvements in survival rates and reduction in mortality rates enjoyed by their older and younger counterparts have not occurred in young adults; in fact, in the 25 to 35 age group, survival rates have not increased at all since 1975.

There are many reasons suggested for this young adult "gap," with the truth probably being a combination of several of these factors:

	Delayed diagnosis
	Lack of insurance, posing financial obstacles to treatment and even routine medical care
	Low clinical suspicion by medical professionals
	Young adult feeling of invincibility
	Biological differences of cancer in a young adult, compared to pediatric or older adult cancer of the same apparent type
	The lowest participation rate in clinical trials, of all ages
	Uncertainty about the best place to treat a young adult, based on their disease, age, available therapy, or recommended treatment protocol

The medical issues facing this underserved group are staggering and are only just now beginning to be addressed. However, as I experienced, one of the most direct impacts felt by young adults is the emotional isolation caused by the fragmentation of this group. All too often, young adults in treatment find themselves surrounded by small children or patients their grandparents' age, without peers to help them through what may be the most difficult experience of their lives.

Although cancer is disruptive at any age, certain issues are magnified for young adults, who, on the curve of a lifetime, are at a critical stage of becoming. Peer support and psychosocial support are vital to help young adults address issues such as: dating with cancer, disclosure to a potential employer, long-term insurance issues, moving back home, loss of fertility, or having to quit school or derail a newly-launched career. Unfortunately, more often than not, young adults fall through the cracks in a system that doesn't know where to put them.

At the same time as we are developing our peer support network, Planet Cancer is also working closely with the Lance Armstrong Foundation to develop a national alliance of medical professionals, hospitals and patient advocate organizations that have programs for young adults. Our hope is that, by working together, we can improve survival rates and quality of life for young adults with cancer. And, in the process, we are going to do our best to eliminate the thought that plagues so many young adults: “I thought I was the only one.”

A Closer Look

	More than 70,000 young adults in their 20s and 30s are diagnosed with cancer every year, eight times more often than in patients less than age 15 years.
	Cancer is the leading disease killer among 20- to 39-year-olds.  In this age group, more than twice as many females die of cancer than the next most common cause of death.
	Young adults are the demographic group most likely to be under- or uninsured. They're too old for their parent's insurance, yet usually aren't in established careers with full health benefits.
	Approximately 2% of cancer patients between 20 and 30 years old participate in clinical trials, compared to more than 60% of patients under 15.
	Improvements in survival rates for young adults have lagged significantly behind the gains made by their older and younger counterparts, and in some subsets have not improved in 25 years.
	Despite similarities in appearance under the microscope, cancers that occur in both younger and older patients are being found to be biologically different in young adults.
	Treatment is often determined by whether a young adult is referred to a pediatric or adult oncologist, and as a result the same cancer is often treated in different ways.
	Yet there is increasing evidence that which treatment is used has a major effect on survival.  For several of the tumors that are commonly treated by both pediatric and adult cancer specialists, the pediatric approach has had better results.

V2N2 ESUN Copyright © 2005 Liddy Shriver Sarcoma Initiative