Transferring care

If you are choosing CHOP solely for proton therapy, we will work in collaboration with your home care team, making recommendations to your primary oncologist and ensuring all parties are kept informed throughout the process.

One of our pediatric oncologists with expertise in your child’s specific cancer will oversee and coordinate treatment while you are in Philadelphia for proton therapy. If your child needs lab work, chemotherapy, imaging or other types of services, we’ll work with your primary oncologist to facilitate these procedures, services and treatments while you are away from home.

You will have access to the full resources of CHOP's Cancer Center, including psychosocial services that provide support for your child's siblings and your entire family. For outpatient children ages 5 and up who are missing classes at school, our teachers work in partnership with your home teachers to help kids stay on track with their studies. Rest assured, your child is getting the very best care available in the world while at CHOP.

Pre-appointment preparation

What to send prior to your child's appointment

• Clinical summary or detailed referral letter
• Pathology slides (must be sent by overnight delivery)
• Copies of diagnostic films such as CT scans, MRIs, ultrasounds and X-rays on a DICOM formatted CD
• Surgical reports
• Lab reports
• Insurance information, including copies of health plan cards

Send the above items to: Roberts Proton Therapy Center, Perelman Center for Advanced Medicine, Attn: CHOP Proton Intake Coordinator, 3400 Civic Center Blvd., Suite C-391, Philadelphia, PA 19104.

What to bring to your child's appointment

• Appointment schedule
• All insurance documentation, including medical insurance and prescription cards
• List of your child’s doctors and their contact information
• All of your child’s prescription and nonprescription medications in the original, labeled bottles. This includes vitamins, nutritional supplements, herbal products and over-the-counter drugs
• List of questions to ask your child’s doctor
• A notebook and pen for taking notes
• Personal items: Comfortable clothes, something to read or play with while you and your child are waiting, any medications or other necessary medical supplies, phone number of the place you're staying

Initial evaluation

Prior to your child’s proton therapy treatment, our intake coordinator will set up a 2- to 3-day evaluation, during which you and your child will visit:

• The medical oncologist
• The radiation oncologist
• Computed tomography (CT) for imaging
• Child life specialists
• The Anesthesia Resource Center (ARC), if necessary

We also perform neuro-psychological testing, as applicable, for brain tumor patients, as part of our brain protocol program.

Each child treated at the Roberts Proton Therapy Center will have the opportunity to enroll in studies examining the long-term neuropsychological and developmental effects of proton therapy. The results of these studies could help doctors refine and improve proton therapy treatments for future generations of children.

Customized treatment for every child

Each child scheduled to receive proton therapy has treatment planned weeks in advance by a team of radiation oncologists, physicists and dosimetrists. The team reviews, revises and adjusts the plan until they all agree that it offers the best balance between treating the tumor and sparing the normal tissue. The treatment planning process includes the following steps:

Simulation

CHOP oncologists consult with the Roberts Proton Therapy Center staff and schedule the child for a CT simulation. During the simulation, your child's body is positioned as it will be during treatment and scans are taken (CT and possibly MRI).

Treatment plan

Radiation oncologists use the data from the scans to develop a treatment plan by:

• Defining the amount of tissue they need to treat
• Defining how much normal tissue they can spare
• Deciding how much radiation will be delivered to the tumor

List of instructions

Radiation oncologists create a list of instructions for the physicists and dosimetrists to use in developing the plan for delivering the radiation.

Agreement of team

All members of the treatment team agree on the plan for your child and the plan goes through an extensive quality assurance process.

Confirmation of plan

Your child is then again placed in the recommended treatment position and the team uses imaging to determine whether the treatment can be delivered as planned. Once that has been established, the scheduled treatments can begin.

Once these evaluations and tests are complete, you and your child will return home for two weeks while your child’s proton therapy plan is designed and finalized. Your child’s proton treatments will begin approximately two weeks following the computed tomography (CT) simulation, which identifies the exact location of the tumor within the patient’s body and also simulates the settings and movements of the actual treatment machine that will be used for radiation treatments.

Daily treatments: What to expect

You can expect the proton treatment program to last approximately two months. Children have an average of 30 treatments scheduled during this time, receiving treatment once a day, every day, from Monday through Friday, except holidays.

Depending on your child's overall therapy program, a single treatment may take anywhere from 30 minutes (when no anesthesia is being used) to three hours (when general anesthesia is used). Much of the treatment time involves precisely positioning your child to accurately pinpoint the tumor with the proton beam.

When you arrive

When you arrive at the Radiation Oncology Department, you will stop at the front desk in the main waiting room. This is where you will register your child and get your parking ticket validated. Then you will go to the children’s waiting room.

To prepare your child for treatment, their vital signs (temperature, blood pressure, heart rate, oxygen, and breathing) will be checked.

If your child has a port, it will be accessed on the first day of treatment and de-accessed on the last day of treatment that week. The port will remain accessed all week. If your child does not have a central line, the CHOP team will ask for a central line to be placed before the start of radiation therapy.

Important information for patients getting general anesthesia

Some children need to have general anesthesia for each radiation treatment, and some do not. It is important that your child stays completely still during radiation treatments, and general anesthesia is medicine that helps your child sleep and stay still during radiation treatments.

The amount of anesthesia given is just enough to let your child sleep and remain still during the treatment. If general anesthesia is used during the CT simulation, it will be used during all treatment sessions for your child, and the anesthesia medicines will be given through your child’s central line. 

General anesthesia will be given by the anesthesia team from CHOP, which is led by a CHOP pediatric anesthesiologist. The anesthesia plan for your child’s care is developed by this team.

You may go to the induction room with your child and stay until your child is asleep. The anesthesia team will monitor your child until they wake up. You will wait in the waiting room until the treatment is over and your child recovers from anesthesia. Only your child and the healthcare team are allowed in the treatment room during the treatment.

What to expect once in the treatment room

Once in the treatment room, your child will be positioned on the treatment table. The radiation therapist will go to an area right outside the treatment room. This area is called the console area. After checking all the settings to make sure that the machine is working exactly as planned, the therapist will turn on the machine. 

Throughout the entire treatment, the radiation therapist and the anesthesia team will carefully check your child. They will watch your child on a TV monitor. 

The radiation therapist controls the movement of the machine. 

Your child will not become radioactive. External radiation treatment affects cells only for a moment. It is safe for your child to be around other children and adults. 

We will take pictures (X-ray or CT scans) during the radiation treatment to make sure your child is in the correct position for treatment. These pictures will also be taken if there is a change in the treatment field or plan. They are not used to measure the response to the radiation. 

If you have questions about anything that happens in the treatment room, ask your nurse to explain. 

Once the treatment is over, your child will recover in the Post Anesthesia Care Unit. The staff will come and get you when your child is in a safe phase of recovery. 

Once your child is fully awake, you will be discharged from the Radiation Oncology Department

Weekly check-ins with your radiation oncologist

At least once a week during radiation treatment, you will be seen by your radiation oncologist. This visit is called your “on treatment visit” (OTV). These visits are important because they give the team the chance to:

• Check your child’s physical condition 
• Discuss any side effects
• Answer any questions you may have about radiation treatment
• Schedule future treatments
• If you have any questions during your child’s radiation treatments, you may contact the radiation oncology nurse practitioner or stop at the nurses’ station for assistance. You do not have to wait for your weekly visit to ask questions.

Follow-up care with your radiation oncologist after proton therapy

A follow-up care visit will be scheduled when therapy is finished. This visit usually takes place 4 to 6 weeks after the end of radiation therapy. Schedule this visit with a member of the Penn nursing team located at the nurses station in the radiation oncology clinic. It may be helpful to coordinate this appointment with any follow-up appointments your child may have with the CHOP medical oncology team or other providers. 

Your child will see the radiation oncology team at regular intervals. At each follow-up visit we will discuss how often your child will need to see the radiation oncologist. For follow-up visits at the one-year mark, a member of the radiation oncology team will contact you to make an appointment.

Your CHOP oncologist will also follow your child’s progress on a regular basis. If you live outside the Philadelphia area, your child will continue to see their primary oncologist. At the end of radiation treatment, we will send a summary to your child’s primary oncologist and/or primary doctor. The primary oncology team should communicate any new imaging or pertinent clinical information to the radiation oncology team. 

Although you may be seeing other physicians, it is important for you and your child to continue to visit your radiation oncologist. This will help us to notice any radiation-related problems as early as possible. Your radiation oncologist will stay in touch with your other cancer specialists. 

Neuropsychological evaluations before and after proton therapy

We strongly recommend that children receiving proton therapy to the brain have a neuropsychological evaluation before treatment begins and at specific follow-up periods after treatment has ended. Neuropsychological testing provides important information about your child’s cognitive development (thinking and processing information) after a cancer diagnosis and treatment.

Before your child’s last radiation treatment, the neuropsychologist will explain the results of your child’s neuropsychological testing. You will need to schedule a follow-up appointment for one year after the completion of radiation therapy. This appointment can be combined with the annual follow-up appointment with your child’s radiation oncologist.

We also suggest that you have your child checked if it is noticed that your child is struggling. Areas of difficulty include problems paying attention, difficulty with school or homework, and difficulty in social situations.