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Annual Report - 2007-2008 - Cancer Care Cycle

Annual Report - Winter 2009

Momentum in Survivorship

Pediatric Survivor Builds His Own History
Physician Helps Patients, Institution Navigate the 'New Normal'
Survivor Helps Break Down the Walls of Silence
Multidisciplinary Model of Survivorship
Citywide Event Pays Tribute to Spirit of Survivors
Defining What Survivors Need and When
Internet Site Provides In-Depth Information

Realizing the growing importance of survivorship issues as cancer patients survive their disease or live longer with chronic disease, MD Anderson has been carefully studying how to best serve this growing population. Today, two-thirds of cancer patients can expect to live five years or longer. With more than 11 million survivors in the United States and an estimated 22.4 million worldwide, the institution has established a Department of Survivorship, is initiating pilot survivorship programs in three clinics and has designed a multidisciplinary model of survivorship care.

Pediatric Survivor Builds His Own History

By Gail Goodwin

Andrew Pegoda

In his own words, Andrew Pegoda is self-instructed, self-directed and family-guided, with research as his focus and fascination.

“I appreciate that the study of history touches on sociology, psychology and literature. It’s a perfect fit for me,” says Pegoda, who has a passion for teaching the subject.

From those qualities, his college classes at Brazosport College, the University of Houston and, now, the University of Houston at Clear Lake are a natural progression, and he’s been helped along the way with scholarship grants from the Children’s Art Project at MD Anderson.

However, Pegoda’s medical education began when he was 4 years old with a non-malignant brain tumor and a diagnosis of neurofibromatosis. In subsequent years, he developed a tumor on his diaphragm, which affected the nerve to his vocal cords and prevented him from speaking for several months. He also has had vision issues, as well as an absence of a growth hormone for which he still takes testosterone daily.

Though only 22 years old, Pegoda has grown up more quickly because of his medical experience. His father describes him as “wiser than his years” and proudly touts his son’s achievements of winning a distinguished student award at Brazosport and now editing a college textbook.

Pegoda continues maintenance treatment at MD Anderson while in the doctoral program at the University of Houston studying, of course, history. It won’t be long before it’s Professor Pegoda who is at the head of the class teaching his students that history can be fun and exciting.

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Physician Helps Patients, Institution Navigate the 'New Normal'

By Mary Brolley

Alma Rodriguez, M.D.

After 22 years at her “one and only” job, Alma Rodriguez is an expert in lymphomas and, even more important, in lymphoma patients.

Rodriguez, M.D., vice president for medical affairs, has watched, listened and tended to these patients, whose diseases, because of medical advances, may have been cured or become chronic, treatable conditions.

Now, her background in helping these long-term patients makes her a perfect choice to lead the institution’s survivorship initiative.

“Twenty years ago, oncologists didn’t have a good sense of how to help adults who lived many years with cancer,” she says. “But because I’ve cared for many of my patients for so long, I became very interested in survivorship.”

As the institution addresses the challenges of this emerging field, Rodriguez knows a great deal about how to prepare patients for life after diagnosis and treatment.

She knows that after treatment ends, many patients feel relieved, but also drained and exhausted.

“Cancer diagnosis and treatment are life-changing,” she says. “We need to help patients navigate through their ‘new normal,’ monitor their health, get them psychosocial counseling, find out what their concerns are.”

Patients worry about recurrences — and the risk of latent effects from often-harsh treatments. Some patients wish to return to primary care doctors in their own communities, while others choose to stay with their MD Anderson physicians.

To meet these needs, Rodriguez envisions survivorship clinics in each cancer specialty — gathering places where patients can have their health monitored, take classes, get counseling or join a support group. In fact, survivorship clinics are being piloted in three clinics at MD Anderson.

The journey has just begun, Rodriguez says. “We must educate patients and providers — and continue research on how cancer treatment affects patients’ health in the future.”

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Survivor Helps Break Down the Walls of Silence

By Mary Brolley

Pamela Lewis

Although she worked daily with African-American cancer survivors, senior behavioral research coordinator Pamela Lewis didn’t fully understand what they were going through.

For one thing, she couldn’t fathom why so many African-American women seemed unwilling or afraid to be screened for breast cancer, despite the deadly swath the disease is carving through their communities.

There is a curious — and dangerous — silence around cancer diagnosis and treatment, Lewis felt.

But when a baseline mammogram at age 36 revealed that she, too, had the disease, she began to understand.

“I didn’t want to tell anyone what I was going through,” she says. “There was a stigma in my community about having breast cancer.”

Three years after treatment, Lewis is thoroughly engaged in her work at MD Anderson, coordinating psychosocial studies for Leslie Schover, Ph.D., professor in the Department of Behavioral Science. Her cancer experience allows Lewis to connect with clients more easily than before.

“Before I had cancer, there was a wall between me and them,” she says. “Maybe being a survivor makes me more credible.”

Lewis also is senior coordinator of Tendrils, an interactive computerized educational tool to help female cancer survivors improve their sex lives.

And she volunteers with Anderson Network, a patient/caregiver support organization and program of the Department of Volunteer Services that matches newly diagnosed patients to survivors with similar diagnoses. She serves on its steering committee and will chair the organization’s Living With, Through and Beyond Cancer Conference next fall.

In addition, Lewis feels a strong responsibility to reach out to patients and survivors in underserved communities through what she calls “emergency case management.” She is constantly linking survivors and families to oncology resources in their communities to help them deal with the financial and insurance barriers to quality treatment.

Surviving cancer has been a complicated process for Lewis. “I’m a work in progress. I have fears, sure. I faced the threat of dying young.

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Citywide Event Pays Tribute to Spirit of Survivors

The Survivorship Houston Coalition, led by MD Anderson, held its first Cancer Survivors’ Day June 1, 2008.The citywide celebration, held at the Houston Texans training center at Reliant Park, was open to all Houston-area cancer patients and their families, regardless of where or when they were treated. More than 500 participants attended the event, which included a variety of speakers, entertainment and activities for children. The goal was to recognize and celebrate the progress made in cancer treatment and the lives of Houston-area survivors, as a result of cancer research.

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Defining What Survivors Need and When

Based on a literature review of long-term and late effects related to cancer and cancer treatments, MD Anderson’s Cancer Survivorship Program has developed algorithms of care and criteria for transitioning patients to survivorship as a distinct phase of cancer care. Surveillance, risk reduction and early detection for recurrence or second cancers, monitoring for late effects and emphasis on quality of life are the four domains identified in these new practice guidelines.

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Internet Site Provides In-Depth Information

Available at www.mdanderson.org/topics/survivorship, MD Anderson’s Internet site offers information for cancer patients at every stage of survivorship. It also provides links to the many programs and services available to survivors as they live with, through and beyond cancer. In addition, patients can request a myMDAnderson.org site from their treatment centers for personalized survivorship information and care.

Faculty Honor

Waun Ki Hong, M.D., head of the Division of Cancer Medicine, was appointed to a six-year term on the National Cancer Advisory Board by former President George W. Bush.

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© 2014 The University of Texas MD Anderson Cancer Center