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Q&A: Cancer in Children, Teens, and Young Adults: What Every Parent Needs to Know
Introduction
Cancer.Net QA Forum, July 1-21, 2006
Cancer in Children, Teens and Young Adults with W. Archie Bleyer, MD, Cancer Treatment Center, St. Charles Medical Center, LIVESTRONG Young Adult Alliance, CureSearch Aflac Adolescent and Young Adult Cancer Research, and
Gregory Reaman, MD, Children's Oncology Group
Cancer.Net QA forums are month-long events on a specific topic. During the month, guests may submit questions to leading cancer experts. Each week, answers are posted on Cancer.Net (www.cancer.net).
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Please keep in mind that Drs. Bleyer and Reaman are unable to give individual medical advice in this setting, nor are they able to address questions that include information specific to one person's medical profile. The information presented here is for informational and educational purposes only and is not intended to substitute the professional medical advice or treatment recommendations provided by your doctor.
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Archie Bleyer, M.D., is Medical Advisor, Cancer Treatment Center, St. Charles Medical Center, Bend, Oregon; Director, CureSearch Aflac Adolescent and Young Adult Cancer Research; and Professor of Pediatrics, University of Texas Medical School at Houston and immediate past Mosbacher Chair and Professor of Pediatrics at the University of Texas M.D. Anderson Cancer Center and Director of the M.D. Anderson Community Oncology Program. For consecutive five-year terms, Dr. Bleyer served as Chair of the Children's Cancer Group (CCG), the world's largest pediatric cancer research organization, with 2880 investigators at 120 institutions, and patients from 48 states, 6 Canadian provinces and sites in Australia and New Zealand. He has served on more than 20 national and international committees, including the National Cancer Institute (NCI) Director's Clinical Trial Review Group, the National Board and Blue Ribbon Research Committee of the American Cancer Society, and the National Dialogue on Cancer (C Change). Over 27 years, Dr. Bleyer has been awarded research grants totaling more than $75 million as a Principal Investigator from the National Institutes of Health, the American Cancer Society, and the Leukemia Society of America. He pioneered the Adolescent and Young Adult Cancer Program of the CCG, Children's Oncology Group, and NCI.
Gregory H. Reaman, M.D., was elected the first Chairman of the Children's Oncology Group (COG). The COG was formed two years ago by the merger of four legacy national pediatric cancer research organizations and is comprised of 238 pediatric cancer treatment programs representing all of North America and Australia. Dr. Reaman is a Professor of Pediatrics at the George Washington University School of Medicine and Health Sciences and a member of the Division of Hematology-Oncology, Children's National Medical Center, which he directed for 16 years. Dr. Reaman is Executive Vice President for Scientific and Medical Affairs of the National Childhood Cancer Foundation (NCCF) and a member of its Board of Trustees. He is a member of ASCO's Board of Directors, as well as the Editorial Board of ASCO's Cancer.Net website. He has also served on the Board of Directors of the American Cancer Society and chaired its Task Force on Children and Cancer. He is on the Editorial Boards of Leukemia, Journal of Clinical Oncology, Journal of Pediatric Hematology/Oncology, The Oncologist, Cancer, and Cancer Physicians Data Query (PDQ), National Cancer Institute. He is a member of the Alliance for Childhood Cancer, the Data Safety Monitoring Board of the NCI's Clinical Oncology Program, and the FDA's Oncologic Drugs Advisory Committee.
Questions Posted July 3, 2006
Question 1: My friend thinks that she did something to cause her cancer. Is this true? Can a kid give themselves cancer?
Dr. Reaman: No. Your friend's cancer likely developed as a result of several complex genetic abnormalities for which neither she nor her parents were in any way responsible. Guilt for doing something "that caused my cancer or my child's cancer" is a common reaction of patients and parents of children diagnosed with cancer. Nothing could be further from the truth.
Question 2: My 10-year-old daughter should be ready to return to school this September after successful treatment for leukemia. Who should I turn to, to help her re-enter the classroom?
Dr. Reaman: School re-entry during leukemia therapy (which is strongly encouraged) and following treatment is best accomplished by multidisciplinary input from your doctors, nurses, child life specialists and social workers at the treatment facility working with your child's teacher, principal, school nurse, and even classmates. Many institutions have established programs for this. I suggest you start with your social worker. The Leukemia and Lymphoma Society has a recent publication to assist with this that can be downloaded (.pdf).
Question 3: My four-year-old son was just diagnosed with Ewing's sarcoma. How much should I try to explain what "cancer" is to him?
Dr. Reaman: A child of this age probably needs to know that he has a problem (disease), which requires management (treatment) by a number of doctors (surgeons, oncologists, radiotherapists), nurses and other health-care team members. The use of multiple modalities (surgery, radiotherapy, and chemotherapy) will be required, and the treatments used will make him feel sick, but they are necessary to make him better. Your social worker and child life specialist may be helpful in helping demonstrate treatments with pictures, models, and interactive exercises.
Question 4: I hear about new cancer drug developments all the time in the news. Are these translating into real treatments for childhood cancers? What are the most promising things in the works for treating childhood cancers?
Dr. Reaman: New drug development in children generally follows that in adults for a number of clinically relevant and logistical issues. The timeline between adult and pediatric studies is shortening as a result of recent legislative changes and at the U.S. Food and Drug Administration (FDA). Some newly approved, targeted drugs, such as imatinib (Gleevec) and rituximab (Rituxan), have positively impacted outcome in children. Many others are under investigation and are of high priority for clinical investigation in multiple pediatric cancers.
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Have a question for this "Ask the ASCO Expert" Q&A? E-mail contactus@cancer.net now! Cancer.Net Q&A forums are free of charge, anonymous, and preregistration is not required. Answers to selected questions are posted throughout the month. Once this Q&A has ended, a full transcript will be archived in Cancer.Net's ASCO Resources section.
Questions posted July 10, 2006
Question 1: Are there studies showing that acute lymphoblastic leukemia (ALL) is a different disease in a 15-year-old versus an adult or child? Are the treatments similar?
Dr. Bleyer: The kinds of ALL that occur in teenagers differ from those that commonly occur in children and adults, some of which appear to be similar to those that occur in younger and older persons. In general, the predominant ALL types in teens are those that are known in children and adults to be more difficult to cure. Regardless of age, the type of ALL must be ascertained at diagnosis since the treatment depends on the type. Treating all patients in the same age group with the same therapy is not appropriate.
In the past, the therapies used were similar but not the same. Pediatric oncologists used the treatments they were familiar with to treat teenagers with ALL, and the adult leukemia specialists applied the treatment they were accustomed to using to their youngest patients. We now have data from seven countries, including the United States and Canada, that compared the pediatric regimens versus the adult leukemia therapy in older teenagers. All show the same result: the treatment regimens used by pediatric oncologists were more effective than those used by oncologists treating adult leukemia patients. As a result, adult-treating leukemia specialists are beginning to use the pediatric regimens. In the future, I expect that we will find that some types of ALL in adolescents are unique to (found only in) this age group. If so, a therapy specific for adolescent ALL will probably be needed.
Question 2: I was diagnosed with breast cancer (stage IIB ER/PR+/her-2-) at age 26. I've been on tamoxifen now for four years, and I'm wondering if I can ever go off of it to get pregnant.
Dr. Bleyer: Because the standard treatment duration for tamoxifen is five years, you have one more year to go before you will have completed your therapy. During the past year, switching to another type of estrogen deprivation treatment using an aromatase inhibitor (e.g., anastrozole [Arimidex], letrozole [Femara], or exemestane [Aromasin]) during the five years has become an alternative. Either way, five years is the total recommended therapy. So, hang in there for one more year.
You probably did not have chemotherapy, which otherwise could make it more difficult for you to become pregnant. If you did, you should discuss this possibility with your oncologist.
Question 3: My nephew is having chemotherapy treatments now, and this last time, he came home from the doctor's office so sick. He could hardly keep anything down. Do you have any suggestions?
Dr. Bleyer: There are many ways to reduce and prevent nausea and vomiting from chemotherapy, including new medications and methods of administering anti-nausea drugs that have become available during the past few years. If the current treatment to prevent vomiting isn't working, many other choices are available. These are summarized for patients and families in a brochure published by the National Comprehensive Cancer Network (NCCN) and may be obtained at no charge by visiting the NCCN website. The guidelines were last updated in June 2005; they are also available in Spanish. Other techniques that may help include self-meditation/relaxation, and acupuncture/acupressure.
Question 4: I was diagnosed with a rare type of brain cancer when I was 19, and I've been out of treatment now for almost a year. I find it hard to hang out with my old friends because they talk about such silly things and get worried about having a bad hair day or finding a date for a sorority outing, and I can't even get worked up about these things anymore. I don't mean to be judgmental; it's just that after cancer, none of those things matter to me. Is this normal?
Dr. Bleyer: Everything you describe is not only entirely normal, it is a benefit of having had cancer (a blessing in disguise, some say). On the other hand, the life lesson you have learned makes it more difficult for you to relate to your friends since they may not understand your new wisdom and perspective. Retaining their friendship may require patience and tolerance, attributes that often accompany cancer survivorship.
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Have a question for this "Ask the ASCO Expert" Q&A? E-mail contactus@cancer.net now! Cancer.Net Q&A forums are free of charge, anonymous, and preregistration is not required. Answers to selected questions are posted throughout the month. Once this Q&A has ended, a full transcript will be archived in Cancer.Net's ASCO Resources> section.
Questions Posted July 17, 2006
Question 1: My 13-year-old son returned to school six months ago after his cancer treatment. However, he doesn't seem to have any close friends here and instead spends his time e-mailing his friends he met at the hospital. Should I be worried about this?
Dr. Reaman: Cancer and its treatment create a "bonding" opportunity for adolescents with cancer. The intimate sharing of experiences and emotions is a common phenomenon, and it is not surprising that your son has made new friends and maintains these friendships. Difficulties with school re-entry and its social environment are also not uncommon. This might be particularly relevant if your son did not have a close knit circle of friends before his diagnosis. If the situation persists during and after the summer break, emotional support or counseling might be considered.
Question 2: What is the latest event-free survival (EFS) rate for low-risk childhood acute lymphoblastic leukemia (ALL)? Also, what is the progress update relating to this leukemia subtype in general, not just within the Children's Oncology Group (COG) but in relation to other studies?
Dr. Reaman: The answer to this question depends in large part on how one defines "low risk" childhood ALL. Data from the COG and European groups utilizing risk-adjusted therapy approaches has detected a population of very low risk patients (defined by age and white blood cell (WBC) count) with specific genetic/ chromosomal abnormalities (TEL/AML-1 or trisomy 4, 10, 17) with a 98% 5 year EFS. In general, children less than 10 years of age with B cell precursor ALL, whose WBC count at diagnosis is less than 50,000 and whose lymphoblasts do not contain unfavorable genetic features and who respond rapidly to initial therapy have a projected 5 year EFS of approximately 90%.
Current investigations are focused at diminishing therapy for the "lowest-risk" patients and identifying specific genes which might predict treatment failure or excessive toxicity in individual patients.
Question 3: Kids treated with chemotherapy and radiation therapy often develop long-term side effects. Has a list of long-term side effects been developed for the National Cancer Institute to track through its epidemiology program? Is there a process for tracking side effects?
Dr. Reaman: The Children's Oncology Group (COG) has published a comprehensive set of guidelines, Long Term Follow Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers, in the Journal of Clinical Oncology 2004, 22:4979 – 90. These follow-up guidelines, which have been adapted as screening measures for potential treatment-related health problems, are accessible at www.curesearch.org. The COG hopes to eventually collaborate with an organization(s) to make these guidelines interactive and individualized for patients and their providers.
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Have a question for this "Ask the ASCO Expert" Q&A? E-mail contactus@cancer.net now! Cancer.Net Q&A forums are free of charge, anonymous, and preregistration is not required. Answers to selected questions are posted throughout the month. Once this Q&A has ended, a full transcript will be archived in Cancer.Net's ASCO Resources section.
Questions posted July 19, 2006
Question 1: My daughter remains cancer-free after treatment for Hodgkin lymphoma three years ago. While I am thrilled with her current health, are there long-term effects from the treatment that we should be watching out for?
Dr. Bleyer: The risk of adverse effects from Hodgkin lymphoma therapy depends primarily on the type of treatment and is therefore difficult to predict without knowing the specifics. Depending on what part of the body was treated with radiotherapy (if given), what drugs were used (if chemotherapy was administered), and the doses of radiation and chemotherapy used, the potential late effects may include: infertility (inability to have children); thyroid, heart, lung or bone growth problems; and an increased risk of developing another cancer. These effects may appear months or years after treatment, and thus follow-up with experts in late effects of Hodgkin lymphoma for many years is important.
Potential adverse effects of treatment should be discussed at the time of diagnosis, and again as treatment is concluded, and long-term follow-up ensues.
Question 2: Aside from an obvious genetic cause, do we know why kids get cancer? In adults, the current thinking is that it takes lots of mutations, usually over 20 or 30 years, to develop cancer, but this model doesn't make sense for children.
Dr. Bleyer: We know that far fewer mutations are found in the cancers that occur in children. Therefore, children must have a different mechanism of cancer causation than what occurs in adults, in whom the model is multiple mutations occurring over many years, often environmentally induced. We have been trying to find environmental causes for many years, without much success. Thus, either most children's cancers are due to different environmental factors with different mechanisms yet to be discovered, or they are not caused by environmental carcinogens. I suspect that the vast majority of cancers in children are "mistakes of nature" due to random, spontaneous mutations to malignancy. If so, not much can be done to prevent cancer in children, and thus early detection during childhood is likely to be a more effective strategy than cancer prevention.
Question 3: Breast cancer seems to run in my family. My mother, aunt and grandmother were all diagnosed in their 40s. I am 20 and am considering preventive surgery since I am so scared of it. Am I overreacting?
Dr. Bleyer: You are not overreacting in your concern, but it is unlikely that you will need preventive surgery. Having a family history of breast cancer in two or more close family members, diagnosed before age 50, on the same side of the family puts you at higher risk of breast cancer. You may also be at higher risk of other cancers (see below) if your family has one of the mutations that causes inherited cancers. Thus, you should consult with a cancer geneticist to determine if testing for the mutation is warranted.
Inherited changes in several genes, including BRCA1, BRCA2, ATM, CHEK2, and RAD51, have been associated with an increased risk of breast cancer. The reasons I don't think you have the familial breast cancer mutation is that only one of your family members is a first-degree relative (parent, sibling, or child) and usually two or more first-degree relatives are required to indicate the need for genetic testing; none of the breast cancer in your family occurred before age 40; all of the breast cancer occurred in females (breast cancer also occurs in males and signifies a potential familial pattern); and you make no mention of ovarian or other cancers (such as leukemia, sarcoma or brain tumors) that indicate a familial cancer pattern (in which the most common examples are BRCA1, BRCA2, and Li-Fraumeni syndrome).
People who have inherited certain mutations in BRCA1 and BRCA2 have a high risk of developing breast cancer, ovarian cancer, and several other types of cancer over their lifetimes. Men with BRCA1 mutations have an increased risk of developing prostate cancer. Mutations in the BRCA2 gene are associated with an increased chance of developing male breast cancer and cancers of the prostate, pancreas, gallbladder, bile duct, and gastrointestinal tract. Melanoma (a form of skin cancer) and lymphoma (a cancer of immune system cells) also are more common among people who have BRCA2 mutations.
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