Q&A: Cancers in Children, Teens, and Young Adults

cancer.net Q&A Forum
Cancers in Children, Teens, and Young Adults with Gregory Reaman, MD, and Doug Ulman

Questions posted April 8, 2005
Questions posted April 18, 2005
Questions posted April 25, 2005
Questions posted April 29, 2005

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Gregory Reaman, MD, 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. He is also Executive Vice President for Scientific and Medical Affairs of the National Childhood Cancer Foundation (NCCF) and a member of its Board of Trustees.

Doug Ulman is a three-time cancer survivor and national cancer survivorship advocate. Having overcome Chondrosarcoma during his sophomore year in college and malignant melanoma twice since, Doug founded the Ulman Cancer Fund for Young Adults, a nonprofit to provide support, education, and resources to young adults, their families and friends, who are affected by cancer (www.ulmanfund.org). Mr. Ulman served as Executive Director of the Ulman Cancer Fund for Young Adults for four years and is currently the Director of Survivorship for the Lance Armstrong Foundation (www.laf.org) in Austin, Texas.

Questions Posted April 8, 2005

Question 1: My six-year-old goddaughter was just diagnosed with rhabdomyosarcoma. Is there any nutritional advice you could provide for my family and me? Are there any particular foods that she should be avoiding or consuming more of being that she has this illness?

Dr. Reaman: There are no special dietary guidelines appropriate for children undergoing chemotherapy. Unfortunately, the side effects of chemotherapy are such that adherence to strict recommendations are usually impossible. We generally encourage multiple small meals or snacks of high-protein, high-caloric content. A big key is what specific foods (even junk food) appeals to the child.

Question 2: What evidence is there that environmental factors, such as mercury, insecticides, or hormone modulators, may be a factor in childhood malignancies?

Dr. Reaman: The evidence that certain environmental agents/exposures may be related to childhood cancer comes largely from epidemiologic studies of exposure and association with cancer in case control studies. Little, if any, evidence of a direct cause and effect relationship exists.

Question 3: What recommendations do you give to parents who fear their child will develop a secondary cancer, or a recurrence of a once-treated primary cancer?

Dr. Reaman: After a certain period of time, generally two to three years following completion of therapy, concern about tumor recurrence is not warranted. Later recurrences of cancer, with the possible exception of Hodgkin lymphoma, are extremely rare. The possibility of second cancers is highly dependent upon types of original cancer, age of the child, specific chemotherapy utilized, and whether radiotherapy was part of the treatment. Specific recommendations can be found in the Children's Oncology Group Long-Term Follow-Up Guidelines. Childhood cancer survivors should participate in long-term, follow-up programs.

Question 4: Can you please discuss viable treatment options for astrocytoma, located in the thalamus?

Dr. Reaman: Treatment options would depend on tumor grade, presenting symptoms, and clinical situation, including age of the child. Known effective chemotherapy exists: vincristine (Oncovin), CCNU, etoposide (Etopophos, Toposar, VePesid), platinum compounds. Radiation therapy is also effective.

Question 5: Can you please discuss the most common late effects seen in childhood cancer survivors as they approach adulthood, and your recommendations for coping with them?

Dr. Reaman: Young adult survivors of childhood cancer may be at risk for any number of late effects. They should be aware. The risk and the specific toxicities are directly related to the type of cancer and specific treatment. Patients and families should consult their treating physicians or view the COG's Long-Term Follow-Up Guidelines. The most common late effect is an increased risk of chronic disease.

Question 6: Can you please discuss how cancer treatment affects fertility and what you recommend for fertility preservation before treatment, for boys and girls?

Dr. Reaman: Risk of infertility following treatment of childhood cancer is related to the specific therapy delivered as well as the age of the patient. Sometimes surgical approaches to relocate the ovaries outside if the radiotherapy fields are effective. Pretreatment procurement and storage of sperm may be an option for adolescent and young adult males.

Please check back next week for more answered questions. In addition, feel free to post a question.

Questions Posted April 18, 2005

Question 1: My six-year-old daughter has Ewing's sarcoma. As a survivor of cancer, what do you think are the most important nonmedical elements of care? Spirituality? Mediation? Creative expression? We are doing everything medically for our daughter and want to make sure we are rounding out her care and giving her the best chance possible of beating this.

Mr. Ulman: I commend you for thinking about the nonmedical aspects of your daughter's experience. We know that many survivors and family members feel the emotional and psychosocial issues are often more difficult to deal with than the physical issues. I would suggest you seek out support programs and services through local and national organizations, as well as child life specialists that have books and videos appropriate for children with cancer. I believe firmly in promoting communication and expression when dealing with cancer, and luckily there are many good resources available to facilitate that process. Many people benefit greatly from meditation, exercise, and creative expression, and I would encourage you to seek out these programs to determine if they are beneficial to your family.

Question 2: What do you tell families about staying hopeful when their child has cancer? Our niece has chordoma and we are told smart people are pessimistic when it comes to this rare disease. We cannot give up hope, but are not sure if this is realistic? What do you recommend for families?

Mr. Ulman: Hope is often the most powerful characteristic one can have when dealing with cancer. I encourage people to be hopeful even when the circumstances may seem less than ideal. Cancer statistics do not take into account an individual or family and their belief system and attitude. I believe that attitude is crucial and hope is essential. As family members, you can participate actively in the promotion of hope while encouraging your family members to seek out the best possible information and clinical care. Good luck and thanks for providing such wonderful support to your niece and her family.

Question 3: My teenage daughter is undergoing chemotherapy and this is greatly affecting her body image. Can you recommend ways I can help her cope?

Mr. Ulman: I think one of most important things teenagers and young adults with cancer can do is to have the opportunity to talk to other people who have been through this experience. Talking openly about the practical and emotional issues that come with a cancer diagnosis is so important. Also, hearing from those who have been down this path and are experiencing a great quality of life is inspirational. As a parent, you can interact with other parents to share experiences that might help you talk to your daughter about these issues as well. Cancer brings with it many negative things, but in the long run your daughter will undoubtedly have a renewed sense of purpose and a view of life unlike that of her peers. Many organizations, such as the Lance Armstrong Foundation and the Ulman Cancer Fund for Young Adults, among others, offer hopeful stories surrounding these very issues. For more information on this topic, please read Body Image and Sexuality.

Question 4: I have a teenager with cancer and he tends to be noncompliant with the instructions his doctor is giving him. What can I do to show my support without nagging him constantly? I would like to see him take responsibility and I know he wants to exercise his independence, but we have not yet achieved this level of maturity.

Mr. Ulman: One of the hardest aspects of having cancer as a teenager or young adult is that it is supposed to be a time of developing independence and yet the individual is forced to rely on so many (family members, friends, and health-care professionals) during this experience. You should encourage your son to speak with other teenagers and young adults who have been down this path. They may be able to instill in him the importance of adherence to the instructions he is receiving. As someone who has had cancer, I know it can be a difficult road due to the lack of control that the individual has while battling this disease. Your son may be trying to take back some control of his life, but I think talking with others his age might be beneficial.

Question 5: What is your advice for people in their 20s who are looking to start dating, hoping to one day marry, who face sexual dysfunction as a result of cancer treatment? I would like to start a new relationship, but this is always a sensitive and very private issue.

Mr. Ulman: You highlight one of the most difficult issues that young adults with cancer face. The best advice I can provide is to be open and honest during the dating process. I know it must be difficult because it is such a private issue, but I think that joining a support network (either online or in person) could prove very helpful. Talking to others who have dealt with this exact issue can be very beneficial. I believe that you will be able to find a relationship that you feel comfortable enough in to share your story and explore the future. This may take time, and I encourage you to be patient and embrace a hopeful attitude that you will find the right relationship. For more information on this topic, please read Cancer and Being Single and Relationships and Cancer.

Question 6: As a cancer survivor yourself, what is the best advice you can give to someone who is newly diagnosed? What is it that helped you through the most?

Mr. Ulman: Reflecting on my own experiences with cancer, I would tell someone that is newly diagnosed to try to move quickly past the "why me?" phase. Many newly diagnosed patients think "why me?" (I know I did) but it is during this period that you don't find any answers. I think the quicker people maneuver through this phase, the quicker they can start focusing their attention on the information and tools that they need to live strong. Cancer is an emotional and physical rollercoaster ride and there are always ups and downs. The sooner people realizes there may not be an answer to why they were diagnosed with cancer, the sooner they can think about the physical, emotional, and practical issues they need to address to survive cancer and enjoy a high quality of life. The things that helped me the most through my experience were my family, friends, and support system. They are so crucial early on in this journey. I would not have been able to cope nearly as well without the support of so many who were eager to offer guidance and practical assistance. I encourage individuals who are newly diagnosed to let friends and family help and assist them in their journey.

Please check back next week for more answered questions. In addition, feel free to post a question.

Questions Posted April 25, 2005

Question 1: When you hear about someone with cancer, are there things you should be saying and should not be saying to show your support. I have a young coworker in her 20s with cancer, and I'm not always sure how to approach her and let her know I care. I don't want to invade her privacy, but sometimes it seems she is alone in her fight against cancer.

Mr. Ulman: One of the most important things you can do to offer support is to just let the person know that you are available to help, talk, and be a friend. Young adults often open up to friends at different times during their experience, and I know that they will be so appreciative that you are there for them. It is often difficult for young adults to ask for assistance because they are supposed to be independent. In my own experience, the most helpful friends were those who took it upon themselves to do things without being asked. One friend brought me movies, another brought dinner, and a third group helped my parents return calls and keep family and friends up to date. Every little bit helps and often it is the things you are not expecting that make the biggest difference.

Question 2: What advice do you give to parents who have lost a teenager to cancer? I understand grieving is a long process, but as a father, I'm unsure how we will ever recover from this loss?

Mr. Ulman: First and foremost, I cannot even imagine what it must be like to lose a teenage child. Grieving is indeed a long process, and I have watched many people endure the pain and suffering that you and your family must be dealing with. One of the ways that many families deal with this situation is by telling the story of the person they have lost, so it might ease the pain of others who find themselves in a similar situation. Individuals and families who confront cancer have so much to offer those who will unfortunately go down this same road in the future. I encourage people to share their experience with others to memorialize their loved one and also help others deal with this horrific experience.

Question 3: As a parent of a (now) young adult with cancer, how can I make a difference and help other families through this crisis?

Mr. Ulman: The best way to help others is to be open and honest about your experience with others. I suggest that you write your story and share it broadly. My mom and I wrote our experience, and we now distribute it regularly in an attempt to help others as they traverse the rocky road that is cancer. By sharing your story on e-mail Listservs and with nonprofit organizations that offer psychosocial, emotional, and practical support you are inherently helping others and yourself. Lance Armstrong refers frequently to something called "the obligation of the cured," and I want to thank you for taking this obligation seriously and for your willingness to support others by sharing your experience.

Question 4: Can you please speak to the value and importance of support groups for young people with cancer?

Mr. Ulman: I think young adults need to interact with others their age who are dealing with the same issues they are facing. For some young adults, support groups offer exactly what they desire in peer support. Others enjoy Internet forums and e-mail support networks because they offer an opportunity for young adults to interact on their own time and not be intimidated by the face-to-face groups. I feel strongly that all young adults should seek out and participate in some support activities, as they truly allow for interaction that is unparalleled and incredibly constructive. For more information, please read the Cancer.Net article, support groups.

Question 5: I realize that cancer seems to change everything. It changes relationships, priorities, routines, etc. How can I minimize the impact cancer is having on my son's life, and the lives of other members of our family? We want to create and maintain a supportive environment for our son, but we also want to maintain some sense of normalcy for our other three young children.

Mr. Ulman: Cancer does indeed change everything. At the Lance Armstrong Foundation, we say that cancer may leave your body, but it never leaves your life. One of the hardest things I dealt with was the lack of control that you seem to have when battling cancer. I would suggest open communication for your entire family, so your children feel safe and comfortable asking questions and discussing their brother's situation. I also suggest each person in the family set a goal. Setting goals gives each person something to work toward, and it gives each member of the family control over something in their lives when others aspects seem uncontrollable. I am a big proponent of setting goals in all aspects of one's life, and I think it is helpful in these situations. For more information, please read the Cancer.Net article, Cancer and Siblings.

Question 6: My best friend has cancer. We are both 21 years old. How do you know what types of things you should say and what things you should definitely not say?

Mr. Ulman: This is a difficult question. Be open with your friend about your concerns, and let him or her know that you are there to help, but that you don't want to intrude. Many young adults want their friends to be aware of the differences that have been caused by the cancer, but they also want to be treated normally in many situations. Let your friend know that you are there for him or her, and don't be afraid to act normally around him or her. I always enjoyed being with my friends and not thinking about the cancer experience for a period of time. For more information, please read the Cancer.Net article, Talking to Someone With Cancer.

Question 7: What do you recommend to young adults with cancer who are battling fatigue all the time?

Mr. Ulman: Young adults are used to having so much energy, so when they are forced to deal with fatigue it is often one of the most difficult things they confront. One of the main ways to combat fatigue is to exercise. While that may sound counterintuitive, it is truly the way to erase fatigue. If exercising is not possible, I suggest engaging in relaxation, meditation, yoga, or another type of activity that will promote overall strength and healing. This will ultimately lead to an alleviation of the fatigue.

Question 8: For children heading back to school following cancer treatment, is there advice you can give to ease this transition?

Mr. Ulman: School reintegration can be one of most difficult things for any age cancer survivor. Cancer changes so many aspects of one's life, and school is one of the items that can change dramatically. In my own experience, school never held the same significance following cancer. I returned to Brown University soon after my diagnosis and graduated on time, but I never studied as hard as I had prior to having cancer. My advice to those returning to school is to engage your support networks (friends, teachers, and classmates), so they understand what you have been through and what you are currently going through. I would also advise that children be given the flexibility to reintegrate slowly, so they do not feel pressured or stressed.

Please check back for more answered questions. In addition, feel free to post a question.

Questions Posted April 29, 2005

Question 1: Is there risk of cancer for someone who used needles for narcotic use during their younger years? Specifically, I have leukemia and a history of illegal drug use. I wonder if there is a connection.

Dr. Reaman: I am not aware of any association between the use of illicit drugs and the development of acute leukemia. There is, however, evidence of an association between illicit drug use, specifically marijuana, early in pregnancy, and the development of acute myeloid leukemia in offspring.

Question 2: Can you please speak about the myth that everyone is born with cancer? My friend says that we all have cancer in our bodies, it just becomes apparent in some people and not in others.

Dr. Reaman: The statement that everyone is born with cancer is indeed a myth. Having said that, however, since the etiology (what causes diseases to develop) of all cancer results from genetic events and everyone is born with a complement of genetic material, then certainly all individuals have the risk of developing cancer if one or more of the causative genetic abnormalities exist. Current thinking suggests that more than a single genetic event is necessary, and that certain populations of patients with a single genetic abnormality may be at somewhat increased risk of experiencing a second event, which may result in the development of a specific cancer. There are some unique situations in certain childhood cancers where embryonic nests of tissue may undergo either spontaneous differentiation or could give rise to malignant tumors. Thus, although everyone may be born with varying risks of developing cancer, it is not true that everyone is, in fact, born with a malignant tumor that may or may not become apparent.

Question 3: My girlfriend's daughter, age 19, was recently diagnosed with cervical cancer. They found two tumors in her uterus. My girlfriend said the cancer was caused from her daughter's history of having frequent urinary tract infections, which caused some sort of subsequent virus. I have two daughters around this age myself, and I wanted to know how common something like this is, and if urinary tract infections can cause something so worrisome as cervical cancer. I thought cervical cancer in woman under age 25 was quite rare. I'm hoping you can shed some light on what might have occurred in this instance.

Dr. Reaman: Cervical cancer is extremely rare in the adolescent age group. It is known to be causally related to human papillomavirus (HPV), but the relationship of cervical cancer and/or HPV to frequent or prior urinary tract infections is not established. I suspect that there may have been confusion with the understanding of the concept of infection, and rather than the association between the development of cervical cancer and "urinary tract" infection, the association should have been with HPV. For more information, please see ASCO's 2003 Meet the Expert Event on The Virus-Cancer Link: Examining the Role of Viruses in the Development of Cancer.

Question 4: Can you please discuss the symptoms of colorectal cancer? I am 20 years old with a family history of colorectal cancer, but my two relatives developed the disease after age 70. I have experienced dark blood in my stool, constipation, discolored stool, and stool with a mucous discharge. I have followed a high-protein diet with little vegetables and fiber. I am wondering if I am at increased risk, and what your recommendation would be.

Dr. Reaman: There is indeed a familial association with the risk of colorectal cancer, but this usually occurs when someone in the family develops the disease at a young age. The specific symptoms that you describe are worrisome and could possibly indicate a number of abnormalities, not only cancer. A gastroenterology consult would seem in order to rule out the possibility of inflammatory bowel disease as well. I would also suggest the diet to which you admit should certainly be re-evaluated in light of what we know about the beneficial effect of vegetables and fiber in the prevention of colon cancer.

Question 5: When my son was diagnosed with pre-B acute lymphoblastic leukemia, we inquired whether there were other treatments available at other hospitals. The oncologist stated that we could go to a different hospital, but all the treatments are the same. We have since found that this may not be the case, and other parents with children with leukemia that we have spoken to are finding the same. I realize that many parents don't seek a second opinion because they don't want to delay their child's treatment, but many of us are feeling misled when we later hear about clinical trials that could have helped our child. What do you recommend?

Dr. Reaman: In the United States, most children with pre-B cell acute lymphoblastic leukemia are treated according to evidence-based standards of care, which have resulted from successive clinical trials in an attempt to improve the outcome and decrease the toxicity of therapy for this disease. Pre-B cell acute lymphoblastic leukemia is not a single disease, and a number of clinical as well as biologic factors are known to be highly predictive for outcome and likelihood of treatment success and risk of treatment failure. This has evolved into the concept of risk-adjusted or risk-adapted therapy, and most clinical trials are designed to address specific questions within individual risk groups of patients. Although treatments may be similar and the same clinical trials may be open at most institutions, parents should not feel pressured to the point of sacrificing their need to explore all options for what may be the best therapy for their child. In addition, initiation of therapy does not preclude a second opinion, and most pediatric oncologists would not only support, but actually facilitate, or should support or facilitate a family's request for a second opinion. As clinical trials are designed to address specific experimental situations and questions, it is never known whether a specific clinical trial would, in fact, provide a "better therapy" for any given patient. Comments to that effect by practitioners are frequently misperceptions. If indeed a practitioner does advise a family that a specific clinical trial is superior to another, or that a specific clinical trial will provide a superior therapeutic benefit, they have done a significant disservice to the family. For more information, please read the Cancer.Net article, Seeking a Second Opinion.

Question 6: Can you please discuss what financial help may be available for a family with a child diagnosed with cancer? We are left paying for many tests and treatments and our family savings is dwindling quickly.

Dr. Reaman: The optimum place to check, with respect to financial resources that may assist with many of the uncovered costs associated with treatment as well as travel to treatment facilities, is the clinical social worker in the pediatric cancer program where your child is being treated. The Leukemia & Lymphoma Society and the American Cancer Society do have modest patient aid programs, which can help defray some of the costs not covered by insurance. Advocating for expanded health-care coverage is an important initiative. Patients and families should not be expected to pay for additional tests and treatments, which may be required as a result of participation in a specific research study or clinical trial, unless they have been informed of this in advance, and have provided consent for such financial exposure. For more information, please read the Cancer.Net article,Financial Support Resources.

Question 7: What is the role of a child life specialist? My child's doctor recommended that I speak with one, but I'm afraid that means my child may be dying.

Dr. Reaman: Child life specialists are important members of the clinical care team in pediatric oncology. They are extremely valuable, trained professionals, whose primary objective is assisting the child within the context of his or her family in coping with the stress of a serious illness and the treatment, much of which is either painful or unpleasant. Creative, recreational, behavioral interventions are designed and supervised by child life specialists. Certainly, child life specialists are involved frequently and most generally throughout the continuum of a child's cancer experience, and as such, they may participate in palliative and/or end-of-life care for patients who need the services. However, most child life specialists become involved with patients and families very early in a patient's course, and certainly involvement of a child life specialist should in no way indicate that the child may be dying.

Question 8: We have a family history of breast cancer. At what age do you recommend teenage girls be screened for breast cancer? What is the incidence of breast cancer in young women, and what can young girls do to reduce their risk?

Dr. Reaman: The specific type of screening that could be recommended with a family history of breast cancer is somewhat dependent on the degree and significance of the family history, that is, number of blood relatives and age at time of diagnosis. Generally, the diagnosis in a parent and offspring all at an early age does suggest a heritable form of risk for this disease, which should be approached through a cancer genetics consultation, with advice provided for specific molecular genetic screening, and any other clinical examinations or studies that might be appropriate.

Question 9: I am newly married and looking to start a family. I was diagnosed with breast cancer two years ago, at the age of 23. What do you recommend to women about breast cancer treatment during pregnancy? If I do undergo a unilateral mastectomy before I become pregnant, will I be able to breast-feed with one breast?

Dr. Reaman: As a pediatric oncologist, I'm not the best person to provide advice with respect to the treatment of breast cancer during pregnancy. I would suggest that you speak to your treating physician, particularly if you are on an estrogen-receptor antagonist with respect to becoming pregnant as well as to managing pregnancy during therapy and the likelihood of breast-feeding. Expert medical and psychosocial advice could be obtained from cancercare.org. For more information, please read the Cancer.Net article, Pregnancy and Cancer.

Last Updated: April 08, 2005