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Cancer institute, non-profit to work together

Rochester Business Journal
August 8, 2014

The Wilmot Cancer Institute is entering a collaboration with local non-profit Melissa’s Living Legacy Teen Cancer Foundation on a program to offer support for teens and adolescents fighting cancer.

The program will expand Wilmot’s Judy DiMarzo Cancer Survivorship Program to include patients ages 13 to 29 and will offer a range of supportive services aimed at patient wellness and support.

“We will offer supportive programming to help them deal with the ongoing social effects of cancer,” said Lauren Spiker, executive director of Melissa’s Living Legacy. “This program will help them transition from cancer patient to cancer survivor.”

The program will work with a critical age group, Spiker explained. Adolescents and teens face challenges while going through cancer treatments that other groups do not, she noted. Those challenges include the effects of isolation from peers and the support they offer.

For patients, the program begins when they enter treatment, Spiker noted. The idea is for the young patients to become familiar with their counselor, who will take them through the treatment and support process.

This will mean hiring a new position, an adolescent and young adult survivorship specialist who will report both to Wilmot and Melissa’s Living Legacy.

“They will build relationships and establish trust as they help navigate the patient through the cancer world,” Spiker said. “They will work here at our center, running the Teens Living with Cancer program, and half the time reporting to Wilmot.”

Spiker said the program has potential to expand. The National Cancer Institute reports that 70,000 adolescents and young adults are diagnosed with cancer each year in the United States.

People in this group, the National Cancer Institute noted, can be at high risk for disease recurrence, secondary cancer and serious health problems as a result of treatment. Yet they often do not get appropriate follow-up care. Teens and adolescents can often deal with additional effects such as depression, anger and age-specific issues, including infertility.

“Our teens and young adults face cancer at a time in their lives when making decisions and critical choices is a relentless challenge,” said Louis Constine M.D., director of the Judy DiMarzo Cancer Survivorship Program. “All of this is tremendously complicated by both the threat of cancer and the side effects of its treatment, not to mention the disruption of their lives.”

The disruption can be drastic, Spiker said.

“This is an age where they’re just beginning to form a self-identity and emerge from their parents’ care, and cancer interrupts all that,” she said. “Their lives get thrown off track in a very dramatic way, much different than any other age group. These kids get pulled out of their social strata, and their friends’ lives continue to go on while they’re going through a very debilitating treatment.”

The disruptions can often affects patients’ care, Constine added.

“These kids can be emotionally overwhelmed, and we found that half don’t go to follow-up appointments and one-third don’t receive survivor-focused care,” he said.

The collaboration fits the growing stature of Melissa’s Living Legacy, which Spiker founded in 2000. Her daughter, Melissa Marie Sengbusch, was 19 when she died of acute myeloid leukemia on June 22, 2000. Before her death, Melissa had asked her mother to take what she learned about the battle with cancer and put it to use to help other teens facing a cancer diagnosis.

In 2012, the non-profit entered into a partnership with Roswell Park Cancer Institute in Buffalo, using a model Spiker said was made for replication.

The program has an emphasis on wellness of both mind and body, including an emphasis on fitness and nutrition, Spiker said.

“When you go through cancer treatment and chemotherapy, you often eat whatever it is you’re able to eat,” she said. “We’re helping them get back into the world of healthy eating.”

The program also includes expressive arts as well as yoga and vocational guidance, such as resume writing.

“For a lot of kids who go through cancer treatment, just getting to a place where they can work can be difficult,” Spiker said. “These are kids who might gain a lot of weight and don’t even recognize themselves, so getting a job feels so difficult. Everything gets derailed for these teens fighting cancer.”

Officials at Wilmot also believe the model created by Melissa’s Living Legacy is well-suited for expansion.

“Collaboration allows us to do more than either of us could do alone,” said Jonathan Friedberg M.D., director of Wilmot Cancer Institute. “We would like to see this effort serve as a model of community partnerships focused on patients with cancer.”

8/8/14 (c) 2014 Rochester Business Journal. To obtain permission to reprint this article, call 585-546-8303 or email

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