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Patient-Centered Guides

February 2003

Follow-up Clinics for Childhood Cancer Survivors

SEBASTOPOL, CA - This year's list of aftercare centers for childhood cancer survivors in the United States has been named by a group of parents of survivors, including Nancy Keene, well-known patient advocate and author of books that help families of children with cancer.

"The powerful drugs and radiation used to cure children affect developing minds and growing bodies," said Keene, co-author of Childhood Cancer Survivors: A Practical Guide to Your Future. "270,000 survivors of childhood cancer live in the U.S. and unfortunately, they often do not get comprehensive follow up to help them make the most of the lives they fought to win."

After years of personally answering hundreds of phone calls and emails from desperate survivors searching for doctors who understood their unique needs, Keene helped create this list of programs for childhood cancer survivors. Again this year, she surveyed major children's hospitals across the nation to find out which ones currently provided comprehensive services to children, teens, and adults who are survivors of childhood cancer.

The list names 26 clinics across the US (see below). Criteria to be included on the list include:

  • Institution has a dedicated time and place for a clinic designed to treat survivors of childhood cancer.
  • Meets at least twice a month.
  • Has a clinic coordinator (usually a nurse practitioner with special interest and skills in treating survivors).
  • Staffed by a doctor with experience in the late effects after treatment for childhood cancer
  • Provides state-of-the-art screening for individual's risks of late effects
  • The clinic refers survivors to appropriate specialists (endocrinologists, cardiologists, etc).
  • Provides wellness education

Some examples of late effects after cure from childhood cancer are:

  • Breast cancer at an early age in female Hodgkin's survivors who received mantle radiation in their teens.
  • Heart disease after treatment with chemotherapy (anthracyclines) or high-dose chest radiation.
  • Learning disabilities in survivors treated with radiation and/or chemotherapy to the brain.
  • Second cancers from chemotherapy drugs or radiation used to cure the first cancer.
  • Symptoms of posttraumatic stress syndrome in survivors and their parents.
  • Infection with the hepatitis C virus in some survivors who received transfusions prior to 1993.

Survivors need experienced help and advice to make the most of their life after cure. "Many of the 250 emails and phone calls we receive weekly are from survivors," said Ruth Hoffman, Executive Director of The Candlelighters Childhood Cancer Foundation. "Survivors need expert follow-up from trained professionals to improve quality of life through early detection and intervention for late effects from treatment. We now send them this list so that they can get the care they deserve."

About Nancy Keene

Nancy Keene is one of the original developers of the Patient-Centered Guides series. Nancy spent years advocating for and supporting her young daughter through intensive treatment for acute leukemia. Nancy's books on childhood cancer include:

  • Childhood Cancer Survivors: A Practical Guide to Your Future with Wendy Hobbie and Kathy Ruccione
  • Childhood Leukemia: A Guide for Families, Friends & Caregivers (now in its 3rd edition)
  • Childhood Cancer: A Parent's Guide to Solid Tumor Cancers with Honna Janes-Hodder (now in its 2nd edition)
  • Chemo, Craziness, and Comfort: Your Book about Childhood Cancer
Her other books include Working with Your Doctor and Your Child in the Hospital (now available in Spanish). She is also editor of:
  • Childhood Brain & Spinal Cord Tumors

Nancy spends considerable time talking with parents of children newly diagnosed with cancer and is a tireless advocate of children's medical rights. She frequently speaks at conferences and hospitals. She was the first chair of the patient advocacy committee of the Children's Cancer Group (2,800 doctors and researchers who design pediatric clinical trials for the US and Canada) and then the first chair of the advocacy committee of the Children's Oncology Group (consortium of 238 institutions that treat children with cancer).

Childhood Cancer Survivors: A Practical Guide to Your Future
by Nancy Keene, Wendy Hobbie & Kathy Ruccione
$27.95, 482 pages, trade paperback
ISBN: 1-596592-460-6
PUBLICATION DATE: April 2000

Follow-Up Clinics for Childhood Cancer Survivors


California

Childrens Hospital Los Angeles
LIFE Program (Long-term Information, Follow-up, and Evaluation)
4650 Sunset Boulevard, #54
Los Angeles, CA 90027
(323) 669-2489
Mary Baron Nelson, MS, RN, CPNP, CPON, Nurse Practitioner and Coordinator
Clarke Anderson, MD
Sees both child and adult survivors; provides referrals for adults.

City of Hope National Medical Center
Long-Term Follow-up Clinic for Survivors of Childhood Cancer
1500 E. Duarte Road
Duarte, CA 91010
(626) 301-8426
Wendy Landier, RN, MSN, CPNP, Coordinator
Smita Bhatia, MD

Colorado

Denver Children's Hospital
HOPE Clinic
1056 East 19th Ave, B115
Denver, CO 80218
Amanda Louey, RN, BSN, Coordinator
(303) 864-5441
Brian Geffe, MD
(303) 861-6776

Florida

Nemours Children's Clinic
Hematology/Oncology Clinic
807 Children's Way
Jacksonville, FL 32207
(800) 767-5437, extension 3761
Annie Rini, RN, BSN, Coordinator
Rotating doctors
Follows children up to age 21, then transitions to adult primary care providers.

Georgia

Children's Healthcare of Atlanta
Cancer Survivor Program
1405 Clifton Road
Atlanta, GA 30322
(404) 315-2717
Melissa Hamilton, Coordinator
Lillian Meacham, MD

Illinois

Children's Memorial Hospital
Long-Term Follow-up Program
2300 Children's Plaza
Chicago, IL 60614
(773) 880-4151
Barbara Lockert, Coordinator
Reggie Duerst, MD
Treats children and teens.

Children's Memorial Hospital
Northwestern Medical Faculty Foundation
Star Program for Young Adult Survivors
675 North St. Clair
Chicago, IL 60611
(312) 695-4979
Karen Kinahan, MS, RN, Coordinator
Arlina Ahluwalia, MD
Treats survivors over 21 years old.

Maryland

Johns Hopkins Oncology Center
Long-Term Follow-Up Clinic
600 N. Wolfe Street
Baltimore, MD 21287
(410) 614-5062
Kathy Ruble, RN, Coordinator
Cindy Schwartz, MD

Massachusetts

Dana-Farber Cancer Institute
David B. Perini, Jr. Quality of Life Clinic for Childhood Cancer Survivors
44 Binney Street
Boston, MA 02115
(617) 632-5124
Ellen E. Casey, Coordinator
Lisa Diller, MD
Sees children and adults.

Michigan

University of Michigan
Department of Pediatric Hematology/Oncology
Long-Term Follow-Up Clinic
1500 East Medical Center Drive
Ann Arbor, MI 48109
(734) 936-9814
Marcia Leonard, RN, PNP, Coordinator
Valerie Castle, MD

Minnesota

Fairview-University Children's Hospital
Long-Term Follow-Up Clinic
Harvard Street and East River Road
Minneapolis, MN 55455
(612) 625-4443
Nancy Youngren, RN, Coordinator
Joseph Neglia, MD

Missouri

St. Louis Children's Hospital
Late Effects Clinic
One Children's Place
St. Louis, MO 63110
Medical directors: Robert Hayashi MD, Shalini Shenoy MD
Nurse coordinator: Amy Schulve
(314) 454-4125

New Jersey

Hackensack University Medical Center
Tomorrows Children's Institute
Cure and Beyond
385 Prospect Avenue
Hackensack, NJ 07601
(201) 487-8987
Hope Castoria, RN
Beverly Ryan, MD
Sees both child and adult survivors of pediatric cancer.

New York

Memorial Sloan-Kettering Cancer Center
Long-Term Follow-Up Clinic
Department of Pediatric Oncology
1275 York Avenue
New York, NY 10021
(212) 639-8138
Elaine Pottenger, MS, RN, CPNP, Coordinator
Charles Sklar, MD
Sees survivors 30 years old or younger; will do one-time consultation with older survivors.

University of Rochester Medical Center
Strong Children's Medical Center
Follow-Up Clinic
601 Elmwood Avenue
Rochester, NY 14642
(585) 275-2981
Cindy Proukou, RN, MSN, CPNP, Coordinator
Andrea Hinkle, MD
Follows both child and adult survivors.

Roswell Park Cancer Center
Long-Term Follow-Up Project
Elm and Carlton
Buffalo, NY 14263
(716) 845-8011
Theresa Carbone, MS, RN, CPNP, Coordinator
Daniel Green, MD
Sees children, teens, and young adults.

SUNI Upstate Medical University
Kids Now Off Therapy
Pediatric Hematology/Oncology
750 E. Adams Street
Syracuse, NY 13210
(315) 464-7229
Sue Shaw, RN, MS, PNP, Coordinator
Irene Cherrick, MD

North Carolina

Duke University Medical Center
Pediatric Hematology/Oncology
Erwin Road
Durham, NC 27710
(919) 684-3401 (appointments for children and teens)
(919) 684-8964 (appointments for adults)
Philip Rosoff, MD (children and teens)
Carlos DeCastro, MD (adults)

Ohio

Children's Hospital Medical Center
ATP Five-Plus Clinic
333 Burnette Avenue
Cincinnati, OH 45229
(513) 636-3512
Judy Correll, RN CPNP, Coordinator
Cynthia DeLaat, MD
Sees both child and adult survivors; will refer.

Pennsylvania

Children's Hospital of Philadelphia
Long-Term Follow-Up Clinic
34th and Civic Center Boulevard
Philadelphia, PA 19401
(215) 590-3025
Wendy Hobbie, Coordinator
Sue Ogle, CPNP and Barbara Anne Heib, CPNP
Jill Ginsberg, MD
Sees both child and adult survivors.

South Carolina

Medical University of SC Children's Hospital
FACT (Follow-up after Cancer Treatment)
135 Rutledge Avenue
PO Box 250558
Charleston, SC 29425
(843) 792-2957
Diane Dufour, MS, CPNP, Coordinator
Sonja Muckensuss, RN, BSN
Julio Barredo, MD

Texas

Children's Medical Center of Dallas
After the Cancer Experience (ACE)
1935 Motor Street
Dallas TX 75235-7794
(214) 456-2948
Debra Eshelman, RN, CPNP, Coordinator
Gail Tomlinson, MD, PhD (children and teens)
Kevin Oeffinger, MD (young adults)

M D Anderson Cancer Center
Long-Term Survivor Clinic
1515 Holcombe, Box 87
Houston, TX 77030
(713) 792-6619
Nita Burrer, RN, ANP, CNS, Coordinator
Norman Jaffe, MD
Steve Culbert, MD
Sees children, teens, and adult survivors of childhood cancer.

Texas Children's Hospital
Late Effects Clinic
Hematology/Oncology
6621 Fannin Street, CC-1510.21
Houston, TX 77030
(832) 822-4727
Sarah Bottomley, CPNP, Coordinator
ZoAnn Dreyer, MD

Life After Cancer Program
Hematology & Oncology Center
Cook Children's Medical Center
901 Seventh Avenue, Suite 220
Fort Worth, TX 76104
(817) 810-2125
Lisa Bashore MS RN CPNP, Coordinator
Jeffrey C. Murray, MD
Treats up to age 30 and will refer adults.

Washington

Children's Hospital & Regional Medical Center
Division of Hematology/Oncology, Mailstop 6D1
ACCESS Long-Term Follow Up Program
4800 Sand Point Way
Seattle, WA 98105
(206) 987-2106
Debra Friedman, MD
Erin Mahan, ARNP, Coordinator

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