Hearing that your child has cancer is shocking. Although little is known about what causes childhood cancer, it may be comforting to know that current research and advances are dramatically improving the way it is being treated and cured, which is bringing hope to many families.
After learning of the diagnosis, consider consulting with a doctor and/or treatment center with expertise in treating pediatric sarcoma. They will be valuable sources of information. Understanding more about your child’s diagnosis will better prepare you for the decisions ahead.
There are many types of pediatric sarcoma. They can begin in bones or soft tissues, which connect, support and surround organs and other areas. Soft tissues include blood vessels, fat, fibrous tissue, muscles, nerves, lymph vessels, synovial tissues (around joints), tendons and a mix of bone and cartilage.
The three most common pediatric sarcomas are Ewing sarcoma, osteosarcoma and rhabdomyosarcoma. Ewing sarcoma and osteosarcoma are staged with the American Joint Committee on Cancer (AJCC) staging system. Rhabdomyosarcoma has a grouping system and staging system. In general, the more cancer cells look like normal cells under a microscope, the more “favorable” they are and the greater the chance that treatment will be successful. Your doctor will be able to develop a plan of treatment most suited to your child once the appropriate diagnosis is made and staging studies (including X-rays and biopsy) are completed.
Following are brief descriptions for each type and treatment options.
Ewing sarcoma is a family of cancers that can form in the bones or nearby soft tissues. It most often develops in children and young adults between the ages of 10 and 20 and is more common in girls than boys. When it forms in the bone, it usually develops in the leg, pelvis, rib, arm or spine. In soft tissue, it more often develops in the thigh, pelvis, spine, chest wall or foot.
To plan treatment, doctors typically consider the stage and whether the Ewing sarcoma is localized, metastatic (spread to other areas) or recurrent (cancer that returns). The primary treatment is multidrug chemotherapy in combination with surgery and radiation therapy (see Treatment). Exploring clinical trials is highly recommended with this cancer because research is ongoing for newer treatment options (see Clinical Trials).
Osteosarcoma primarily affects and weakens bones anywhere in the body and can destroy tissue near bones. The disease begins when immature bone cells become cancer cells instead of developing into mature bone cells. Osteosarcomas most commonly start in the bones around the knee joint, including the femur (lower end of the thigh bone) or the tibia (upper end of the shin bone), or the humerus (upper arm bone between elbow joint and shoulder). It is rare for osteosarcoma to develop in soft tissues. It primarily affects teens and young adults in their twenties. Osteosarcoma has two main subtypes: central tumor (medullary tumor) or surface tumor (peripheral tumor). Each of these subtypes also has subtypes.
Doctors typically describe osteosarcomas as localized (only in the bone), metastatic (spread to other areas) or recurrent (cancer that returns). Surgery is the primary treatment, and clinical trials should be considered.
Rhabdomyosarcoma is a type of soft tissue sarcoma that forms in the immature cells that normally become striated muscle. These are muscles people can control. It can develop anywhere in the body, including the head and neck, urinary or reproductive organs, arms or legs, the trunk, lungs and other areas. It is slightly more common in boys than in girls and is most common in children under the age of 5.
This sarcoma has three subtypes: embryonal, alveolar and anaplastic. Embryonal is the most common and occurs most often in the head and neck area or in the genital or urinary organs. Alveolar tends to occurs in the arms or legs, chest, abdomen, genital organs or anal area. Anaplastic rarely occurs in children. Other less common types of sarcoma can form in tendons, nerves or blood vessels.
Surgery and combination chemotherapy (two or more chemotherapy drugs used together) are the main treatments for rhabdomyosarcoma. Every child treated for this type of sarcoma should receive chemotherapy to decrease the chance cancer will recur.
Most bone and soft tissue sarcomas in the pediatric population are treated in a limb preservation fashion, which is the removal of the tumor and parts of the limb that are affected by the cancer. This is followed by rebuilding or reconstructing the limb so that the child regains function. Even in patients who have significant growth left, newer technologies allow surgeons to rebuild the limb in a functional and cosmetically pleasing fashion in the vast majority of cases.
Treating children is not like treating adults. Children’s bodies are still growing, and they have different physical and emotional needs. Talk to your child’s health care team to help create a care plan, and consider these factors.
- Get a second opinion. Seeing a different pediatric oncologist will either confirm the original diagnosis and treatment recommendations or offer new information to consider.
- Explore clinical trials. Clinical trials are often recommended for treating childhood cancer. They may offer your child access to promising new treatments that aren’t available outside of the trial. Children younger than 18 are legally unable to give “informed consent” to take part in a clinical trial, so parents must do so (see Clinical Trials). Children mature enough to understand will be involved in the “assent process.” The research will be explained in kid-friendly language using videos or other visuals before the child is asked if he or she “assents” (agrees) to take part.
- Consider fertility preservation. Some cancer treatments may cause infertility. If possible, talk to your child’s doctor before treatment begins to determine the fertility preservation options that may be available. Options for boys and girls will depend on whether they have reached puberty. For girls, oocyte (unfertilized egg) freezing or ovarian tissue freezing followed by transplantation may be considered. For boys, sperm banking and testicular tissue freezing may be options.
- Prepare for side effects. Side effects generally occur during treatment, while late effects may occur after treatment ends or even decades later. Ask your doctor about the potential side effects for each type of treatment, and keep in mind that not everyone experiences the same ones (see Side Effects).
Late Effects of Pediatric Sarcoma
Children who are treated for pediatric sarcoma may experience some side effects later in life — these are called late effects. They can happen months or even several years post-diagnosis. Ask for a list of symptoms to watch for and, if they occur, alert your health care team immediately. Establishing a follow-up plan with your doctor will ensure that the late effects are dealt with accordingly and in a timely manner. Below are some possible late effects of pediatric sarcoma treatment.
Changes in bodily function and capabilities. Children who undergo surgery and radiation to treat sarcoma may experience joint, bone and muscle changes, as well as delays in growth.
Exposure to viruses. If the child received any blood transfusions during sarcoma treatment, he or she will be tested for HIV, the hepatitis virus and HTLV-1, which have small transfusion-associated risks.
Gonadal dysfunction. Chemotherapy may affect sex hormone production. This, in turn, can lead to infertility, early menopause and brittle bones. Decreased sex hormone levels may also increase the risk for heart attack, fracture and obesity.
Heart or lung problems. Chemotherapy treatment may cause acute and late injuries to the cardiac muscle or lungs.
Immune function. After chemotherapy, a child’s immune system may be weakened for up to nine months, leaving him or her more vulnerable to diseases and infections.
Kidney function. Certain chemotherapy drugs may affect kidney function.
Psychosocial problems. Cancer diagnosis and treatment can pose a significant life stress that can lead to issues in relationships, education, health care and professional and personal goal-setting.
Guiding Your Child Through Cancer and Its Treatment
Children with cancer need special care. Although they may experience some of the same challenges as adults, they need your help to manage some of the problems that can occur.
They may feel their world has been turned upside down by a cancer diagnosis. Depending on their age, they may even have difficulty understanding the concept of cancer. You are a vital part of helping your child understand what is happening and cope. You may feel overwhelmed at times, but you are still the same mom or dad who has always supported them. Keep in mind that being flexible, patient and honest is very important from diagnosis through treatment and beyond.
Your physician and staff will care for your entire family as they understand siblings and family members will be affected by your child’s diagnosis. Support groups, educational material and even other patients who have gone through similar situations can be sources of support.
Good nutrition is very important for children going through treatment. Cancer and treating it can take a toll on the body and may make it difficult to get all of the nutrition needed to fight cancer and recover. Children’s bodies are still maturing, and they need the nutrients from a healthy diet to continue growing. Good nutrition prevents weight loss, maintains strength and energy, enables them to tolerate side effects better, reduces the risk of infection and may help them recover faster.
Appetite loss may be a challenge. Food may not sound good, especially if your child feels nauseated. There are many ways to encourage your child to eat. Be flexible with meals and mealtimes. Your child should eat whenever he or she is hungry. Consider offering several small meals and snacks instead of three large meals. If your child is having difficulty consuming enough calories, include high-calorie and high-protein foods. Even hamburgers, fries, pizza and ice cream are okay if your child wants them. The body requires a lot of calories when it is healing.
Make mealtimes fun. Ideas include cutting sandwiches into shapes, making faces out of fruits and vegetables and using colorful plates, cups and straws. Change up normal meals. For example, have pizza for breakfast or pancakes for dinner. Take meals to the backyard or serve them on a blanket on your living room floor.
Support your child emotionally. They may struggle with their feelings and may need your guidance to make sense of what is happening. Don’t push your child to share his or her feelings. Find activities to boost your child’s spirits, such as shopping, reading, watching movies or playing games. Watch for signs of depression. Call the doctor if you notice your child is frequently sad or appears depressed.Encourage continued friendships with family members and friends. Phone calls, text, video chats and social media platforms make staying in touch easy, especially when an in-person visit may not be possible.
Explain possible changes in appearance that may be caused by treatment. Physical changes caused by treatment may be upsetting to your child, especially if he or she is at a sensitive age. Teens often put a lot of value in appearance and may find some of the physical changes, such as hair loss, embarrassing. Ask your child’s doctor if you should expect hair loss. If so, let your child pick out ball caps, hats, scarves or wigs ahead of time. Encourage your child to wear them and get used to them before they become necessary.
Prepare them for returning to school after being out for treatment. Your doctor will determine if returning to school is medically appropriate for your child. It may be helpful to have a member of the medical team contact the school to explain necessary precautions, make a plan for managing side effects and answer any questions they may have. You may want to set up meetings with your child’s teacher, school nurse and principal to prepare for your child’s return. Although some children may be excited to return to school, others may be nervous or afraid. Socially, they may experience children who don’t know how to act when a classmate is ill. Make a plan for how your child can respond to or ignore those moments. Some children may have difficulty concentrating or doing school work as a result of treatment side effects. You may need to work with the doctor and the school to determine the best course of action for your child.
Stay positive. A positive attitude will go a long way to supporting your child. Trust your instincts and, remember, you are not alone. Your child’s medical team will be there to help and provide resources for other services or support.