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Childhood Cancers FAQ

Helpful Information For Dealing With Your Child’s Cancer Diagnosis

What is cancer, and how are children treated for it?

Cancer is an uncontrolled growth of abnormal cells. As cancer cells clustered in “tumors” grow, they cause damage by replacing normal tissue. Cancer can take many different forms, some of which attack specific organs. Different types of cancer can grow at widely varying rates and respond to differing treatments. Early treatment improves the chances for arresting the disease. We treat children with solid tumors with proton therapy.

What does the stage of tumor mean?

Once the diagnosis has been confirmed, your child’s oncologist will assign a stage to the cancer. Staging for cancer is complex and depends on the location of the primary tumor, the size of the tumor, the involvement of nearby tissues, whether lymph nodes are involved, and if the cancer has spread to distant parts of the body. It tells the doctor the specifics of the cancer.

Will my child be okay?

This may be the hardest question a parent ever asks and only your child’s doctor can answer it. Fortunately, the success rate for treatment of childhood cancer is very good. It is appropriate to ask your doctor what the success rate is for your child’s diagnosis and whether proton therapy might be an option.

What caused my child to get cancer?

In most cases, it is not known how a child gets cancer.  We do know that it is not caused by anything you did as a parent.  In some cases, the cancer has a genetic basis, but most often the cause is unknown.

How long has the cancer been there?

It’s not possible to determine when the cancer started.

Do my other children need to be checked for cancer?

This is almost never necessary.  Your family history and evaluation of the cancer will determine whether there is any risk to other family members.  Your child’s oncologist can help answer this.

What is proton therapy?

Proton therapy is a next-generation radiation treatment that precisely targets tumors, minimizing radiation to healthy tissue and improving the lives of children with cancer. Proton therapy deposits the greatest amount of radiation right into the tumor and then stops, allowing children to receive high doses with less risk of damage to nearby healthy tissue. This more targeted form of radiation is especially useful for childhood cancers, where the impact of excess, harmful radiation causes long-term damage. Research shows proton therapy can minimize short- and long-term side effects, reduce the occurrence of secondary tumors and improve patients’ quality of life.

Is proton therapy painful?

Most people cannot feel proton therapy, even during daily treatments, so there is no need to worry that a treatment session will be painful for your child. A few people have reported a slight warming or tingling sensation in the area being treated.

Will my child be alone during treatments?

Because radiation effects from proton therapy are accumulated and radiation therapists treat many patients each day, it would be a long-term health risk for them to be in the room during the radiation treatments. To ensure that your child is OK and the treatment delivery is going well, the therapist will be in voice contact with your child and your child will be constantly monitored via video camera. If your child needs assistance, the radiation therapists will stop the treatment and tend to your child’s needs immediately. Because of the risk of radiation exposure, you cannot be in the room with your child either.

Who will care for my child?

In addition to your child's physician, a number of people will be involved with your child's care. They include nurses, radiation therapists and child life specialists.

Do all patients experience the same side effects of proton therapy?

For some people, radiation therapy causes few or no side effects. For others, the side effects are more severe. No two cancers and no two patients are exactly alike; therefore, each treatment is individually customized by the radiation oncologist. If a side effect occurs, your Care Team will work with you and your child to ease or prevent it.

What are some of the side effects from proton therapy?

Side effects will depend on the patient’s age, medical history, diagnosis, disease size and location. Some patients may receive chemotherapy in conjunction with proton therapy; some will receive much lower radiation doses than others and therefore symptoms will vary significantly. Common symptoms include temporary hair loss and skin reactions in the direct path of the radiation. Fatigue is also associated with treatment to large areas. Ask your Care Team doctor what symptoms your child might experience.

Will my child lose his or her hair?

If your child receives chemotherapy, he or she will probably lose hair, temporarily. Proton therapy may lead to localized temporary hair loss. Children and teens deal with hair loss in different ways.  Some kids wear hats or scarves.  Some wear wigs.  Others do not attempt to hide the baldness. In any case, your Care Team will counsel and assist you, so you have a solution that fits your child's needs.

How long will treatment last? How often do we come?

Treatments usually last between 15 minutes and one hour, not including anesthesia. During this time, the proton beam will only be on for a few minutes. Most of the time is taken up by positioning your child correctly for this precise treatment.

Does my child have to undergo anesthesia?

If your child is unable to lie perfectly still for a period of 15 minutes to an hour, we generally recommend they undergo anesthesia. Proton therapy is a very precise treatment. We want to make sure the proton beam peaks directly inside the tumor. Any movement can compromise this precision.

What is involved in anesthetizing my child for treatment?

An anesthesiologist (doctor) will conduct the procedure with a nurse. Our anesthesiologists are specialists in pediatric anesthesia and work for our partner Seattle Children’s Hospital, one of the world’s leading children’s hospitals. Your child will be monitored at all times while under anesthesia. Anesthetic protocols used for radiotherapy include fast acting anesthetics, and are customized for each patient. Your child will not feel any pain during this procedure.

Will my child need to stay in a hospital?

No hospital stay is required for proton therapy. You come to the center each day for a couple of hours, then leave to go about your usual routine.

Will my child be able to go to school?

Whenever possible, we encourage the child to remain in school.  However, some patients receiving strong chemotherapy in conjunction with proton therapy are not allowed to go to school until medically stable and temporarily require special school services.

Can my child continue his or her regular routine or activities while undergoing proton therapy treatments?

Your child can continue with his or her normal routines. Most patients continue activities through the course of treatments. When your child feels tired, do not let him or her become overexerted; it’s important to take time to rest when needed. Encourage your child to get plenty of sleep and maintain a healthy diet.

What should I do if my child develops a fever or gets sick?

You should report any symptoms of fever or other illness immediately.  You will be given a phone number so you can contact a Care Team nurse or the doctor on call, 24 hours a day.

Should my child be on a special diet or take vitamin supplements?

Generally, we allow the child to continue on their normal foods and eating schedule. The center can arrange for you to speak with a registered dietician who can help you plan a diet that is right for your child or recommend supplements. Please contact our Patient Services department at 1-855-528-7248.

What happens when the treatment is finished?

When your child has completed all proton therapy treatments you will usually come back in six months for a follow-up appointment. Meanwhile, you may still be seeing your child’s oncologist or your child may undergo other treatments such as chemotherapy. At the end of treatments we celebrate the milestone with a special graduation ceremony.

What if the cancer comes back?

In some ways, this means starting over.  As in the beginning at initial diagnosis, tissue samples are needed to verify the diagnosis, tests are performed to determine the extent of disease, and a new treatment plan is devised. Proton therapy is often used for recurrent tumors.

Do you offer counseling?

We have a Child Life Specialist who can help make sure your child has the best possible experience at the Center. You may be able to get counseling services through our partner Seattle Children’s. Please contact our Patient Services department at 1-855-528-7248 for help.

What support groups do you have?

Our Patient Services Manager can help you find support groups in the area. Please call 1-855-528-7248.

Why do you participate in clinical research trials?

Research is an important part of our mission at SCCA Proton Therapy. We participate in numerous clinical trials or research studies. The goal of research is to find better treatments for patients and improve health outcomes. Learn more about our current clinical trials and research studies under the Proton Therapy section of this site.

Should my child take part in a clinical trial?

Scientists and researchers are continually making progress in the fight against cancer. At any given time, many clinical trials of new drugs and protocols for childhood cancers are being tested. Across North America, most children with cancer are treated on a clinical research trial. Your physician only recommends a clinical trial when your Care Team believes it offers the best chance for a cure. Even if your treating physician recommends treatment on a clinical trial, you always have the option to choose the “standard of care” treatment that does not involve research.

Once accepted for proton therapy how do I find lodging and how do I coordinate transportation if I am from out of town or the country?

SCCA Proton Therapy provides resources to help patients and families find lodging. Some lodging is within walking distance of our center, while others require transportation. We work with our partner Seattle Children’s and Ronald McDonald House. Please contact our Patient Services department at 1-855-528-7248 for help finding housing and transportation, as well as other necessities.

Is there a place where my child can play?

We have a playroom at the center that is open to all patients, siblings and visitors. Our playroom features toys, books, movies and a Wii in a child-friendly environment.

How can I reach you?

For emergencies, you will be given 24-hour access to a Care Team nurse and/or a doctor on call through a phone number.  For other matters, you will be given a phone number for your nurse and your doctor. To reach the center, call 1-855-528-7248.