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Survivorship: The Next Step

Conquest - Summer 2010

By Julie Penne

Sgt. George Alderete, a 32-year veteran of the Houston Police Department — 12 of which were spent in the Homicide Division — has witnessed a side of death that few people see.

Sgt. George Alderete, an eight-year kidney cancer
survivor, is thankful for every day with his daughters,
Jennifer (left) and Stephanie (not pictured), both students
at Texas A&M University, and wife, Frannie (right).

But as an eight-year kidney cancer survivor, Alderete shares a perspective on life that more than 12 million people nationwide — and 20,000 survivors at
MD Anderson — like him relish.

Alderete, who also is a middle school and high school softball coach, athlete, husband and father of two daughters, is one of more than 4,500 survivors who have been inducted into
MD Anderson’s growing Cancer Survivorship Program. He also is among the first survivors to be seen in the Genitourinary Survivorship Clinic — one of the original three survivorship clinics established — where he is monitored for possible recurrence or progression and watched for late effects.

Each cancer journey personal

“Three years ago when I hit the five-year mark, my surgeon, Dr. Christopher Wood, suggested that it might be time to consider moving my care to the survivorship clinic that had opened down another hallway,” Alderete says. “That really hit me, and it was then that I realized I was a survivor.”

For Alderete, the epiphany of survivorship came with a physical transition to another clinic. But for other survivors, their own definition is as personal as their cancer journeys.

“All patients diagnosed with cancer are survivors from the time of their diagnosis, but there are three distinct phases of survivorship: living through, with and beyond cancer,” says Alma Rodriguez, M.D., professor in the Department of Lymphoma and vice president for medical affairs.

“Survivors have had successful treatment to cure their cancer, yes, but chemotherapy, radiation, stem cell transplants, surgery, immunotherapies and clinical trials often lead to significant late effects and that’s where the survivorship program comes in,” she says. “No longer is it enough to give effective treatment and then wish the patients well after declaring them disease-free. We have an obligation to the patients we have diagnosed, treated and supported through a long, arduous journey.”

Found in transition

MD Anderson is among a number of cancer centers nationwide that have embraced survivorship as a component of the cancer care cycle.

George and Frannie Alderete with their dog, Brody.

In 2005, after the Institute of Medicine published its landmark report, “From Patient to Cancer Survivor: Lost in Transition,”
MD Anderson President John Mendelsohn, M.D., charged an internal task force with developing a survivorship program to address the extensive physical, emotional and social needs of this growing group. It is a population that has been increasing since the cusp of the new century, and the national ranks are expected to swell to 20 million by 2020 as progress against cancer continues.

To date, seven MD Anderson clinics are the front line and foundation for the evolving institutional program that includes research and education. In these clinics — six for adults and one for pediatric patients — specialized faculty and/or advanced practice nurses meet with survivors, check for signs of recurrence and address issues related to the consequences of treatment.

Since 2008, more than 4,500 survivors have been seen in clinics dedicated to breast, genitourinary, gynecologic, head and neck and endocrine (thyroid) cancers, as well as recipients of allogeneic (unrelated donor) stem cell transplants. Another 1,600 survivors will be seen in those clinics in the near future.

New clinics are due to open later this year for colon cancer and lymphoma survivors, and other clinics will come on line over the next few years.

Beyond the main campus

Hundreds of other survivors are seen in adapted programs at the MD Anderson Regional Care Center in the Bay Area and the Harris County Hospital District’s Lyndon Baines Johnson Hospital, where MD Anderson faculty oversee the cancer care.

Each of the survivorship clinics has its own set of tailored guidelines. These algorithms were developed by clinical teams who know best the treatments and potential late effects for specific disease sites, along with representatives from Chaplaincy, Integrative Medicine, Social Work, Psychiatry, Pain Management, Clinical Nutrition, Clinical Cancer Prevention and others who know well the social and emotional aspects of cancer.

For example, Mouhammed Habra, M.D., and Advanced Practice Nurse Sherrie Flores, who team up to oversee the Thyroid Survivorship Clinic, identify potential complications from prior cancer therapy, such as dry mouth, loss of taste, fatigue and dental conditions, and screen for secondary cancers. Or the team in the Breast Survivorship Clinic may spend ample time talking to survivors about osteoporosis, infertility, body image, sexuality and lymphedema.

The clinical teams call on in-house resources when survivors need additional emotional and social support.

Specific needs of survivors

“A cookie cutter approach is as ineffective for survivorship as it is for cancer treatment,” says Fran Zandstra, an oncology nurse with a master’s degree in business administration and director of the Cancer Survivorship Program. “We’re taking the same multidisciplinary approach for treating cancer and applying it
to survivorship.

Alma Rodriguez, M.D. (left), vice president for medical
affairs, and Fran Zandstra, director of the Cancer
Survivorship Program, discuss the program's direction
and growth.

"What survivors appreciate is to come to the center where they are comfortable, see the team they know well, remain connected and talk about health issues important to them now,” she says. “We also found that patients under treatment find inspiration seeing the survivorship clinic, meeting survivors in the waiting room and looking forward to their own graduation to the clinic.”

The survivorship clinics also free up busy faculty to focus on patients currently under treatment.

Zandstra and others on the front lines admit that talking to survivors about making the transition from their oncologists to the survivorship clinic can be very emotional. But for the survivor, the survivorship team has the time, expertise and resources to talk through post-treatment and life issues, leaving the specialists to tend to active patients.

Zandstra is quick to add that it is difficult for the oncologist to give up seeing survivors, too, and that most look forward to the visits because they are positive, personal and re-energizing.

Passport plan for health

As survivors continue their transition back to their communities, it’s vital that their primary care physicians have a snapshot of what they have been through so they, too, can contribute to a better quality of life, monitoring for side effects and subtle condition changes.

To align care with community physicians and keep them apprised of their patient’s original cancer diagnosis, treatments, potential late effects, medications, health status and recommended follow-up care, the Survivorship Program developed the Passport Plan for Health. Available through a two-page printed brief or a secured web-based platform, this document gives community physicians the precise and relative medical information they need to be a partner with MD Anderson’s
Survivorship Program.

To date, more than 1,800 individual passports have been provided to survivors.

“It’s a bit like having the ‘Cliff ’s Notes of Cancer Care,’” Zandstra says. “With the passport, patients can re-enter their community better informed and empowered to take an active, informed role in caring for their health, and isn’t that what survivorship is all about?”

Common physical, emotional and social side effects of cancer treatment

  • Lapse in memory or concentration
  • Infertility
  • Risk for second cancers
  • Anxiety
  • Depression
  • Financial woes
  • Family stresses
  • Sexuality issues
  • Fatigue
  • Osteoporosis or bone loss
  • Decreased nutrition
  • Dry mouth or dry eyes
  • Numbness of hands or feet

© 2015 The University of Texas MD Anderson Cancer Center