Q1. I thought it was just a prolonged cold. Was I too late to visit the hospital?
A1: The mother and other members of the family should not blame themselves. Many childhood cancers progress so rapidly that the cancer has often metastasized by the time it is noticed. Many present as advanced diseases. Neuroblastoma is no exception. You may feel that if you had noticed it earlier, the situation might have been different. We completely understand how you feel, but the signs and symptoms of childhood cancers, including neuroblastoma, do not appear until they have progressed to some extent. Please do not blame yourself. It is important that we should think about the future together and make a step forward.
Q2: What kind of disease is neuroblastoma?
A2: Neuroblastoma is a kind of childhood cancer that is formed in the abdomen or near the backbone. It is the second most common solid tumor in children after brain tumor. It is common in infants and young children, but rare in children of 10 years and older. It is estimated that approximately 300 children develop neuroblastoma every year in Japan. Some neuroblastomas are found by chance at the time of chest x-ray examination or as a solid abdominal mass at infant health examinations. When the disease has progressed and metastasized, signs and symptoms such as fever, hemorrhagic macules, bad mood, getting tired easily, and limping due to the pain in the limbs may appear. Please consult a childhood cancer specialist because there is a good chance of curing it.
Q3: What is the cause? Will siblings also get this disease?
A3: The cause of cancer, both in adults and children, is abnormalities of the genes. All gene abnormalities are not always inherited. It is known that some rare childhood cancers are hereditary and some people have a certain predisposition to cancer. However, neuroblastoma is not inherited, except in special cases. The causes of gene abnormalities are thought to be radiation, electromagnetic waves, carcinogenic chemicals, virus infections, diet, etc. Environmental factors like these may have less impact on children than on adults. Therefore, the cause may be gene abnormalities that have accidentally occurred during a child’s development, in addition to environmental factors.
Q4: Can it be cured?
A4: There is a good chance of curing it. However, not all cases neuroblastoma are cured uniformly in all children. The types of neuroblastoma vary widely; some neuroblastomas are cured spontaneously without any treatment, and some require very intensive therapy. It is most important to assess and determine the “curability” of the disease of your child before starting with treatment. The curability is determined by the age of onset, degree of disease progression, appearance of tumor cells (under a microscope), gene amplification in tumor cells, number of chromosomes in tumor cells, etc.
Q5: I’m worried about the side effects of the treatments. What are possible side effects?
A5: Chemotherapy, radiation therapy, and surgical therapy can all cause side effects. Generally, side effects can be classified as early side effects and late side effects. Early side effects are those that occur within several weeks of treatment or during treatment, and some of these can be prevented or must be dealt with urgently. Late side effects are those that occur after the completion of treatment or later, and they significantly affect the children’s future development process. Please let the physician in charge fully explain the treatment before each therapy is started.
Q6: Can my child live a normal life? Can he/she go to kindergarten or school?
A6: Whether or not the child can live a normal life depends on the intensity of the present and future treatment. The intensity of treatment is determined by the risk group at the onset of neuroblastoma. Generally, the disease is classified into either the low risk, intermediate risk, or high risk group. Milder treatment is performed for disease with a lower risk, it causes milder side effects, and the child can go back to a normal life sooner. The higher the risk, the more intensive the treatment is and the longer it has to be continued. It is expected that side effects are more severe and the impact on the child is stronger. He/She can gradually go back to a normal life after the treatment has been finished. It is important to visit your doctor regularly to check for complications and recurrence.
Q7: When can my child be discharged from the hospital?
A7: Treatment for neuroblastoma includes surgery, chemotherapy, and radiation therapy. These therapies may be used in combination or alone. If only surgery is performed, he/she can leave the hospital as soon as he/she has recovered. If two or more therapies are used in combination, the duration of hospitalization may be 2 to 3 months, or up to almost 1 year. Outpatient chemotherapy is available depending on the schedule of the therapy and the physical strength of the child. Please discuss it fully with your doctor.
Q8: What should I tell my child about the disease?
A8: When telling your child about the disease, what and how you tell depend on the age of the child and his/her understanding. Since the peak age of onset of neuroblastoma is around 1 year, you cannot tell your child anything at this time point. Please tell him/her about the treatment and the disease when he/she has grown up, is older and can understand more. When he/she is 3 to 4 years or older, he/she develops his/her own identity, and therefore needs a convincing explanation somehow or another. Of course, he/she can still not understand a direct explanation of the disease. What is important is not to tell a lie, but to tell him/her what he/she wants to know the most. For example, he/she may want to know when he/she can leave the hospital, whether or not he/she can stay home for the weekend, or what examinations he/she will undergo the next day. His/Her anxiety may be relieved by the explanation. Please use simple words that he/she can understand, like “There is something in your tummy that is not good for you, but the doctor will help to make it go away.” At some hospitals, pediatric health care professionals called child life specialists, which is still a new profession in Japan, may give an explanation so the child can understand. If such professionals are not available at your hospital, your doctor or nurse will help you. Please ask them.
Q9: How do I decide on which treatment option to take?
A9: The three main treatments for neuroblastoma are surgical therapy, chemotherapy, and radiation therapy. If the tumor is confined to a limited site, only surgery may be performed or mild chemotherapy may be added after surgery. Depending on the extent or spread and nature (malignancy) of the tumor, combination therapy (surgery plus chemotherapy) may be used, and radiation therapy may also be added. There is also a special form of chemotherapy, that is, high dose chemotherapy with hematopoietic stem cell transplantation. This therapy is often used in combination with other therapies. We recommend that surgery is performed by pediatric surgeons and chemotherapy by pediatric oncology/hematology specialists. We also recommend to participate in a clinical trial that is carefully designed according to the child’s condition.
Q10: The doctor has recommended participation in a clinical trial. What should I do?
A10: Many people may think that patients are used as research material when you hear the words, clinical trial. However, clinical trials are common with childhood cancers. Since cases of childhood cancer, including neuroblastoma, are few in number, we cannot obtain good outcomes if the treatments differ from one hospital to another. In Europe and the U.S. where a cutting-edge approach to childhood cancer is available, most patients participate in a clinical trial to receive treatment. Clinical trials are designed with the aim of developing better treatment while giving careful consideration to the patients, and they obtain better outcomes with fewer side effects. Not only can your child benefit from a clinical trial, but future patients can also benefit from it.
Q11: How much does treatment cost?
A11: Since childhood cancer in patients younger than 18 years at the onset is covered by the Research Program for Chronic Pediatric Diseases of Specified Categories, the out-of-pocket medical cost (30%) that should usually be paid by the patient is covered by public money (the program remains applicable as long as the patient is under 20 years). The amount covered by the program varies according to the household income and the patient’s condition (from no out-of-pocket cost up to a maximum of 11,500 yen). Please seek advice at the healthcare counseling office of your hospital, or from a social worker. If you apply for the program as soon as possible after diagnosis, your costs will be covered without any time lag. You can apply for this program at the public health center in your area. Besides this, there are also programs like the Special Child Dependent's Allowance, Disabled Child Welfare Allowances, and financial assistance from the Children’s Cancer Association of Japan. Please ask a social worker.
Q12: My child has siblings. What should my attitude toward them be?
A12: The mother often has to stay in the hospital with the young patient. It is known that siblings who are left at home feel abandoned and their stress or burden may be greater than expected. The siblings sometimes develop signs or symptoms of psychosomatic disorders such as stomachache, tics, or refusal to go to school, or they may turn their back on the parents or the patient. It is important to explain the situation to them if they are able to understand to some extent, and to consciously show affection to them. It is a good idea to discuss with your doctor that the patient and the mother can have as much opportunity to stay at home as possible, or to try and talk with the siblings more often, for example, with a cell phone.