Proton Therapy for Childhood Cancers

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Because proton therapy is so targeted, it can work very well for treating cancer in children. Children’s bodies are more sensitive to radiation than adults’ bodies. This puts them at higher risk for serious short- and long-term side effects, like growth and development problems or secondary tumors (cancers that are caused by treatment) later in life. But with proton therapy, we can reduce these risks.

Fred Hutchinson Cancer Center – Proton Therapy has radiation oncologists who specialize in proton therapy for children. We work closely with Seattle Children’s medical oncologists, surgeons, anesthesiologists and other specialists, as well as your child’s referring physician.

Proton Therapy for Childhood Cancers with Dr. Ralph Ermoian

“I am very thankful to have had proton therapy because the risk of cancer in my body was decreased immensely and my heart was safe during treatment.”

— Cora, childhood cancer patient

Choosing Proton Therapy for Your Child

Here is some basic information about proton therapy and how treatment happens at Fred Hutch.

Advantages of Proton Therapy Over Standard X-ray Radiation

Physicians usually recommend proton radiation therapy to treat solid tumors in children because it sends less radiation to healthy tissue than standard radiation therapy does.

Less radiation means fewer short- and long-term side effects and lower risk for serious problems that may result from treatment. Studies show that proton therapy may help protect children from development problems, growth delays, lower IQ, cancer forming in other parts of their body and other health problems, compared to standard X-ray radiation.

childhood brain adn spine scan — These pictures show radiation treatment to the head and spine. This may be done for cancer that started the nervous system, like medulloblastoma, or that spread there from another part of the body. The colored areas get radiation. The black, gray and white areas do not. With proton therapy (left), less healthy tissue is exposed to radiation. With standard X-ray radiation therapy (right), more healthy tissue is exposed.

Medulloblastoma is a common childhood cancer that usually starts in the lower part of the brain in the back of the skull. It often spreads to other parts of the central nervous system (brain and spinal cord). Proton therapy can be a good treatment option because it sends less radiation to the heart, lungs and abdomen compared to standard radiation therapy. Less radiation to these vital organs lowers the chance that your child will have health problems years later.

Standard X-ray radiation therapy for childhood brain cancer can have serious side effects. For example, if radiation hits a part of the brain called the hypothalamus, it might affect chemicals (neurohormones) that are made there. This can affect your child’s levels of growth and thyroid hormones — and how well they grow and develop in the future. The goal with proton radiation therapy is to lower the risk that radiation will harm healthy parts of your child’s brain.

Childhood Cancers Treated With Proton Therapy

Physicians prefer protons over standard radiation therapy for many different childhood cancers.

These are some of the many childhood cancers that may be treated with protons:

Anaplastic astrocytoma
Atypical teratoid/rhabdoid tumor
Chordoma
Craniopharyngioma
Desmoid tumor
Ependymoma
Ewing sarcoma

Gliomas, including optic pathway/hypothalamic glioma, oligodendroglioma and oligoastrocytoma
Glioblastoma
Intracranial germ cell tumors (germinoma)

Juvenile angiofibromas
Lymphoma
Medulloblastoma
Meningioma
Nasopharyngeal carcinoma

Neuroblastoma
Osteosarcoma
Pineoblastoma
Retinoblastoma
Rhabdomyosarcoma

Anesthesia

Depending on your child’s age, they may need anesthesia to make them go to sleep before each proton therapy session. Anesthesia makes sure your child will hold still so their treatment is accurate.

For proton therapy to be precise, the patient needs to be in the exact same position for each treatment and hold very still. To help with this, the care team uses tools like bean bags and masks that keep your child in one place (immobilization devices). Even so, holding still can be hard for very young children.

If your child has a hard time staying in one place, their physician may suggest general anesthesia, a medicine that will make your child fall asleep before a procedure. Anesthesiologists from Seattle Children’s, who specialize in working with children, provide our anesthesia services.

Although some children may need anesthesia for the entire treatment time, we offer a program for some children aged five and older to encourage them to avoid or wean off the need for anesthesia. We have a child life specialist and other experts who can help your child with this. Anesthesia is not available for adult patients.

Child Life Specialists

At our proton therapy facility, your family will be able to see a child life specialist for support. We encourage you to reach out to them any time during your child’s proton therapy care.

We understand that your child’s cancer can be very challenging for your whole family, but you’re not alone. We have a skilled and caring child life specialist to help you. Child life specialists are pediatric health care professionals. They work with children and families in hospitals and other settings. They’re here to help you and your child understand what is happening. Seattle Children’s also offers counseling.

A child life specialist can:

Explain a condition or treatment in words your child or teen can understand
Create a coping plan your child can use during the treatments
Offer support during and after treatments
Use play to help your child understand medical procedures and express feelings
Work with medical staff to learn your child’s exact needs
Give you details about child development and the effects of health care on kids
Teach you and your child ways to help your child cope and relax
Guide you and your family members with ways to talk with your child about treatment

If your child will be starting treatment or is already in treatment at Fred Hutchinson Cancer Center – Proton Therapy, feel free to reach out to our child life specialist, Erin Behen, directly. Erin can help you learn clear and age-appropriate ways to talk with your child about treatment. Call 206.306.2812.

For resources on preparing your child for proton therapy, check out our coloring books and teen guides on the Resources page.

Explaining Proton Therapy to Your Child or Teen

When your child asks questions about cancer or treatment, be honest. If you are not open with them, their mind may come up with ideas that are worse than the truth. Here are some tips and resources to support you in talking with your child. For more support, please call our child life specialist, Erin Behen, at 206.306.2812.

Tips For Talking With Your Child About Proton Therapy

Use words that match their age.
Encourage them to share their feelings.
Ask questions. Ask them what they understand (it’s often a lot more than we think) and what they want to know. Don’t overthink your answers. Your first instinct about how to answer is probably a good one. Let them ask follow-up questions.
Sometimes children don’t ask questions because they worry about what the answer might be. You can help by letting them know that it’s OK to ask questions. Other times, children might ask the same question many times to work through their feelings. This is normal.
Remember that you’re not alone. Our doctors, nurses, child life specialist and other members of the care team are with you and your child each step of the way before, during and after proton therapy.
If your child feels nervous about getting proton therapy, they might like to have a tour of the facility to see the radiation technologists and equipment. We will be happy to set up a tour for you.

What to Expect During Proton Therapy — Coloring Books

Our child life specialist and other team members made coloring books to help your child know what to expect at our proton therapy facility. You can download a printable version based on your child’s needs.

What to Expect During Proton Therapy — A Guide for Teens

This guidebook was made to help your teenager understand what they can expect when getting proton therapy care at Fred Hutch. Our goal is to help teens feel more comfortable with the proton therapy process and encourage them to ask questions.

A Guide for What to Expect During Proton Therapy for Teens (PDF)

Learn More

What Is Proton Therapy?

Getting Proton Therapy Treatment

Meet Our Team

Our proton therapy team is here not only to treat your disease, but to listen to you and take care of you and your family. They are experts in proton therapy who focus on giving you personalized radiation treatment and who understand your questions, needs and concerns.

Erin Behen, MS, CCLS

As a child life specialist, Erin works with children to develop coping mechanisms, discuss treatments and help parents figure out the best ways to support their children during treatment. Her day may include helping caregivers decide whether a child requires sedation, and if so, preparing the child for it; playing with kids to open up communication and answer questions; giving children choices and a voice in their treatment; and helping them get accustomed to the equipment, processes and side effects.