Proton Therapy
What to Expect

Experienced and Personalized Care for your Child

When you think about your child undergoing proton therapy for cancer, it is natural to feel scared and overwhelmed. Our care team understands, and is committed to making the experience as positive as possible.

Knowing what to expect at the Cincinnati Children’s Proton Therapy Center will help put your mind at ease. Please know that we are here when you need us to provide additional information and answer your questions.

Our experienced providers are specially trained to provide personalized, multidisciplinary care for children who are receiving proton therapy. Your child’s care team may include the following providers.

  • The pediatric oncologist is a specialist who is an expert in diagnosing and treating cancer. This doctor will coordinate your child’s cancer care at Cincinnati Children’s. 
  • The radiation oncologist is a doctor trained in the use of proton therapy. Radiation oncologists work with other specialists to create your child’s proton therapy treatment plan, and monitor your child’s health and progress during treatment. 
  • The radiation medical physicist and dosimetrist help create your child’s proton therapy treatment plan, and ensure the safe delivery of the proton radiation treatment.
  • You will meet our nurse coordinator during your child’s first appointment at the Proton Therapy Center. This nurse will help guide you through the treatment process and answer your questions. Nurses and medical assistants also will provide care and support during the course of treatment.
  • Radiation therapists deliver the proton therapy during each treatment visit.
  • A neurologist and/or neurosurgeon provides specialized care for children whose cancer affects the brain and/or spine.
  • An orthopaedic surgeon provides care for children with a tumor affecting the bones and/or joints.
  • Pain management specialists work closely with other members of the care team to provide comfort, care and support whenever it is needed during cancer treatment. The pediatric anesthesia team provides specialized sedation during proton therapy sessions, when needed.
  • The nutrition team optimizes your child’s nutrition during cancer therapy, tailoring a nutrition plan to your child’s specific needs.
  • The physical medicine / rehabilitation team provides customized therapy to help children who are experiencing physical or cognitive problems caused by cancer and cancer therapy. Learn more.
  • A dedicated teacher from our Hospital School Program will assist in keeping your child up on their school work, minimizing disruptions in learning and helping them to stay on track with their peers.
  • School intervention specialists are the link between the family, the school and the child's medical team. They provide information to help teachers and staff understand your child's diagnosis, and work with schools to make sure the appropriate services are in place to help your child succeed academically. Learn more.
  • Child life specialists focus on your child’s emotional needs, and help make the experience as positive and kid-friendly as possible.
  • Social workers provide emotional support, guidance, education and referrals to community resources.
  • Proton therapy billing specialists and financial counselors answer your questions about insurance and paying for your child’s care, and can direct you to helpful resources for more information.

After you schedule your child’s first appointment with the Proton Therapy Center, our team will begin coordinating everything to ensure that the visit goes smoothly and efficiently. A referral coordinator will begin collecting medical records, imaging studies and past test results. The referral coordinator will share this information with the radiation oncologist and communicate with your child’s medical oncologist. The goal is to make sure that everyone who is caring for your child is working together to provide the most effective, well-coordinated cancer treatment possible, with the minimum number of visits to the hospital for testing, treatment and follow-up.

Your child’s first appointment at the Proton Therapy Center may take up to two hours. This will include time with:

  • A nurse, who will perform a physical exam, talk to you about your child’s medical history and answer any questions you have
  • The radiation oncologist, who will examine your child, talk to you about proton therapy, explain what the treatment process will be like from start to finish, and answer your questions 
  • The nurse coordinator, who will answer any remaining questions you have and discuss next steps

You and your child also will take a tour of the Proton Therapy Center and meet the child life specialist. She is an integral part of the care team, and can:

  • Explain proton therapy to your child in terms that are understandable.
  • Play games and do fun activities to help your child feel more comfortable.
  • Share examples of how other children cope with proton therapy and share tips that may help.
  • Talk to you about how your child is doing and ways our team can help improve the experience.
  • Connect with other people on the care team to ensure that your child’s unique needs are met.
  • Celebrate treatment milestones with your child in fun and memorable ways.

Once you and your radiation oncologist decide to move forward with proton therapy as your course of treatment, a proton billing specialist will work with your insurance carrier to obtain coverage. The billing specialist will keep you informed throughout the insurance authorization process.

Obtaining authorization is usually a straightforward process. But if you have any concerns or problems, our billing specialist can help provide necessary documentation, make follow-up calls on your behalf and answer questions you have.

The treatment planning process officially begins during your child’s second appointment at the Proton Therapy Center. This appointment is scheduled about two weeks before your child’s first proton therapy treatment. The appointment typically takes about one hour.

During this visit:

  • You will learn more about proton therapy and sign treatment consent forms.
  • Your child will undergo a treatment planning computed tomography (CT) scan on the area of the body that will be treated. These scans provide information that helps our team develop a precise plan for administering the radiation. 
  • Our team will create customized immobilization devices that will help your child remain still during treatment. The devices can include custom-made head masks and/or body molds.

The Importance of Lying Still

In order for proton therapy to be precise, children must lie completely still during each treatment session. If your child will have difficulty lying still, the care team will discuss the option of giving your child anesthesia before the CT simulation and before every treatment session.

After the CT simulation, our team will create your child’s proton therapy treatment plan. A radiation oncologist, radiation physicist and a specially trained treatment planning professional called a dosimetrist will be involved in this complex process. Treatment planning typically takes one to two weeks.

The team will determine how much radiation is needed, how to target the tumor, how many treatment sessions your child will need, and more. A typical proton therapy treatment plan involves treatment once a day, five days a week for four to six weeks.

When the treatment plan is ready, the radiation therapist will call to schedule your child’s daily treatments. During this conversation, the radiation therapist will provide any special instructions for your child’s first treatment session and answer any questions you have about your child’s treatment.

Children who will not be receiving anesthesia during their proton therapy sessions come back to the center for a “dry run” before treatment begins. The official name for this appointment is “verification simulation,” and it takes about an hour.

During this visit, the radiation therapist will bring your child into the proton therapy treatment room, also referred to as the treatment gantry. The radiation therapist will position your child on the treatment table, using the customized immobilization devices that were created during the CT simulation visit.

Next, the therapist will simulate the process of setting up for a proton therapy treatment session. This will include taking X-rays. During this appointment, the therapist will not deliver any proton radiation. It is just a dry run to help our team make sure that everything is in place for treatment to begin.

If your child is going to receive anesthesia prior to each proton therapy treatment, the verification simulation will occur on the first day of treatment, not at a separate visit.

Checking in at the Proton Therapy Center at Cincinnati Children's. 

When you arrive at the Proton Therapy Center for your child’s treatment sessions, please check in at the front desk. The child life specialist or radiation therapist will take your child to the treatment area when it is time.

Once in the treatment room, the radiation therapist will position your child on the table using the customized immobilization devices.

When treatment set-up is complete, the radiation therapist will step out of the treatment room to administer the radiation. He or she will see and hear your child via computer monitors and (if your child is awake) be able to communicate via a microphone.

When the treatment session is over, children who did not have anesthesia can leave right away. Those who had anesthesia will spend some time waking up in our anesthesia recovery space.

Your child will see the radiation oncologist at least once a week while receiving proton therapy. These visits takes place after the proton therapy treatment session, and
typically take 15-30 minutes. They provide an opportunity for the physician to assess your child, address any side effects and answer questions.

Your child’s radiation oncologist is available outside of scheduled appointments. If you have a question or concern at any time and would like to speak to a physician, simply let the radiation therapist or a nurse know.

Your child’s final proton therapy treatment session is cause for celebration, and our team will mark the occasion in a way that makes your child feel good!

Soon after this last treatment appointment, your child will have follow-up tests to help evaluate the success of the proton therapy. You and your child will then meet with a radiation oncologist or medical oncologist to talk about next steps. We will share this information with your child’s referring physician, if needed.

Ella's family and caregivers celebrate her last round of targeted radiation.

How Child Life Specialist Helps in Proton Therapy

A child life specialist at Cincinnati Children's helps patients and families during proton therapy.

A child life specialist helps reduce stress and provides extra support to families when a patient is undergoing proton therapy treatment. Learn more in our blog.