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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