Frequently Asked Questions about Cancer

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Oncology Referrals

Physicians can refer patients to CHOC through our eCeptionist Referral Portal.

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Between understanding the terms used by the doctors and nurses to knowing who to call when your child isn’t feeling well, we know that adapting to life with cancer is something that impacts the entire family. All patients and their families are given a binder with specific information on their cancer treatment at the Hyundai Cancer Institute at CHOC. With all of the information patients and families get regarding treatment, it’s easy to forget to ask some of the basics while at appointments. Below are some of the most frequently asked questions our case coordinators get regarding the medical basics of cancers. Additional questions should be directed to the patient’s case coordinator or social worker. The phone numbers are intended for current Cancer Institute patients only.

What is cancer and is it contagious?

Cancer occurs when one or more of the body’s cells begin to divide in an uncontrollable way. Cancer can affect the cells of an organ (kidney, bone, brain), blood or lymphatic system. A collection of many of these abnormal cells is called a tumor. The causes of cancer are not yet known. Cancer is not a disease that is transmitted from one person to another like the flu or a cold.

What is a protocol and a roadmap?

A protocol is the treatment plan designed for the patient at the time of diagnosis. This protocol may be chosen from the Children’s Oncology Group (COG) protocols that are used across the nation. It outlines the course of therapy the patient will receive.

A roadmap is a schedule listing all the days of the child’s treatment. The roadmap may include when chemotherapy drugs are given as well as when labwork, X-rays, lumbar punctures and bone marrow aspirations may need to be done. Dates may vary depending on blood test results or infections, which may result in changes in the chemotherapy schedule.

What is a remission?

Remission is a term used when there is no evidence of disease. Remission only occurs after treatment of the cancer with chemotherapy and/or radiation therapy and/or surgery. Patients undergo a number of tests on a scheduled basis to determine if there is any disease. Remission is not the same as a cure. A cure is said to have occurred once a patient has been in remission and remains disease free for at least five years.

What is metastasis?

Metastasis occurs when cancer spreads from one part of the body to another. The primary site is the location of the original tumor and the secondary site is the metastasis (spread of cancer cells to another place in the body).

What does a positive culture mean?

A culture may be performed on blood, urine or other tissues or body fluids. A positive culture means that some type of organism (bacteria, virus, yeast, fungus) has been identified. If a bacterial, viral or fungal infection is present, it is treated with antibiotics, antivirals or antifungals.

Who will be treating my child?

At the Hyundai Cancer Institute at CHOC, cancers are treated by specialists on disease-specific teams. These teams are made up of associates who not only specialize in treating cancer, but specialize in treating your child’s specific cancer. Treatment teams include a variety of doctors, nurses and specialty staff who understand the very unique needs of children, teens and young adults with pediatric cancer. Learn more about the associates at the Cancer Institute.

I still have questions concerning my child’s medical treatment plan. Who should I talk to?

Our nurses and physicians are always available to answer questions. Case coordinators can help with any questions about the treatment plan and can also arrange for patients or caregivers to speak with the primary oncologist.

What can I do about the weight gain (or loss) my child is experiencing?

For children who are underweight, our physicians and case coordinators can refer to our clinical dietitian who can develop a plan to promote healthy weight gain and growth. For children who need to lose weight and improve their fitness, please speak with the patient’s primary oncologist at the next scheduled clinic appointment or contact the patient’s case coordinator.

Will my child receive sedation prior to procedures?

If sedation is needed, the child may receive medication through a variety of different means. Sometimes, however, medication can be eliminated with the use of visual imagery and relaxation. The patient’s oncologist or case coordinator can discuss the variety of options available at CHOC.

My child is fearful and gets upset before doctors visits (procedures, taking medication). What can I do?

The child life staff at CHOC is trained to help children cope with these types of concerns. A child life specialist is always in the outpatient infusion clinic and available in the hospital if the child is admitted. For help at home, ask your child’s case coordinator to connect you with one of our child life specialists who can provide at-home tips.

Can my child play and be around others?

We encourage children to be as active as they can tolerate. Playing with other children is acceptable as long as those children do not have a contagious illness at the time. Approximately 7 to 10 days after a course of chemotherapy, when the blood cell count drops to its lowest point (nadir), it is important to take more precautions to avoid people who may be ill. It is better to take children undergoing treatment to play in open-air places like parks instead of enclosed places like shopping malls, theaters and the like. If the patient has never had chickenpox and is exposed to chickenpox when playing with other children, notify the oncologist within 24 hours. (More on chickenpox below.)

If the patient’s siblings or other immediate family member living in the home becomes ill, contact the clinic at (714) 266-1672. The clinic is open 8 a.m. until 4:30 p.m. and is closed for lunch from noon until 1 p.m. After hours and on weekends, current patients may call (866) 316-3348.

What should I do if my child or my child’s sibling is exposed to or comes down with chickenpox? What happens?

If the child has never had chickenpox and spends time with another child (in a class or play situation) who subsequently develops chickenpox, call the oncologist within 24 hours. Current patients and their families should contact the clinic at (714) 266-1672. The clinic is open 8 a.m. until 4:30 p.m. and is closed for lunch from noon until 1 p.m. After hours and on weekends, current patients may call (866) 316-3348.

Chickenpox is particularly dangerous to children receiving chemotherapy, especially if the patient has not previously had it. Chemotherapy and radiation therapy lowers the patient’s defense to infection. Precautions must be taken to try to prevent or lessen the outbreak.

If an exposure has taken place, and the child has not had chickenpox, the patient will receive an injection of varicella zoster immunoglobulin, which is given in an attempt to prevent the child from contracting the infection. If the patient is hospitalized after an exposure to chickenpox, and has not previously had the disease, he or she will be isolated from other children. This is done as a precaution against exposing other children to chickenpox. If the patient has active chickenpox, he or she will be hospitalized in a negative pressure isolation room and will need to be on another floor so as to not expose other cancer patients. Chemotherapy will not be given until after he/she has recovered. The risk period is from one to three weeks after exposure.

If the patient has already had chickenpox, he or she may break out with shingles, a painful, itchy rash that looks like chickenpox and is caused by the same virus. Shingles is usually isolated to one area of the body such as the chest or back. If the child has shingles, notify the oncologist immediately. Treatment with anti-viral drugs is necessary, and the child will be hospitalized in a negative pressure isolation room or on another floor.

My child will be returning to school and I need some assistance in preparing the school staff and working with them to develop an educational plan. Who can I call?

CHOC child life staff is available to help with the transition back to school with our S.E.A.S. (Student Education and Support) program. Our specialists offer school or classroom presentations to help ease the transition. At the school, we can educate students and teachers so that they can understand what the patient has experienced. We offer the child the chance to “be the expert” and talk about his or her experience and answer questions (if the child is comfortable doing this). Our ultimate goal is to clear up misconceptions and rumors as well as encourage classmates to be supportive.

We use age-appropriate videos, books, pictures/illustrations geared toward helping students understand their classmates’ situation in a non-threatening way. Current patients and their families who would like a presentation or have additional questions may call (714) 509-8473.

Our family is faced with some financial difficulties, including housing and/or employment. Are there any agencies that can help?

Our Cancer Institute Social Services department can provide resources based on the patient and family’s needs. Contact the patient’s social worker for more information and resources.

What services are available to help with my child’s feelings or behavior (i.e., sadness, anger, anxiety)?

We offer our patients and their families with helpful psychosocial and child life services. Our case coordinators can provide information on our specific services.

Who can I talk to about the impact of cancer on my family? Are there support groups?

Our social workers can provide a list of support groups and other resources for both patients and their families.

What do I do to make a same day appointment?

Current patients who need a same day appointment should contact the Clinic Appointment Desk at (714) 266-1672. The clinic is open Monday through Friday, 8 a.m. until 4:30 p.m. and is closed for lunch from noon until 1 p.m. Calls received during the lunch break will go to voice mail. If the child is ill, please be certain to go to the “isolation waiting room.”

What is the difference between short-term and long-term follow-up?

At the Hyundai Cancer Institute at CHOC, we break survivorship treatment into short-term and long-term follow up.

If you are less than five years from diagnosis, you are considered to be in short-term follow-up. Visits during short-term follow-up continue to be with your primary oncology team. Visits are more frequent and may occur every three to six months at the cancer clinic.

If you are more than five years from diagnosis and two or more years off therapy, you are considered to be in long-term follow-up. Visits to the ACTS clinic during long-term follow up often occur once a year.

Both short-term and long-term follow-up care may involve visits with a multidisciplinary team of specialists to evaluate and monitor for potential late effects, depending on the patient’s disease or therapy. All aspects of the survivor’s life is taken into consideration including physical, emotional and cognitive areas. The main goal of our program is to educate the survivor and his or her family regarding their disease, treatment and recommended medical follow-up, so that they will become wise consumers of medical care in the future.

Why is long-term follow-up important?

Long-term follow-up care is an important part of being a cancer survivor.

The main purpose of follow-up care is to provide education about survivorship issues including the significance of the patient’s disease, treatment and potential risk factors. We work with our survivors so that they can be knowledgeable and proactive health care consumers.

Follow-up care visits are also important to help in the prevention or early detection of other types of cancer, address ongoing problems due to cancer or its treatment, and check for physical and psychosocial effects that may develop months to years after treatment ends. All cancer survivors should have follow-up care at lease once a year.

How long should cancer survivors be followed?

Cancer survivors should be followed by a medical provider at least yearly for the rest of their lives. After the initial end of treatment, survivors are followed at closer intervals, but as the length of time off therapy increases, as does the length of time between follow-up visits.

What are late effects?

Treatments that may have saved a life from cancer might have effects on a survivor’s health in the future. Late effects are secondary conditions that may arise months or years after treatment. Late effects may be physical, psychological or cognitive in nature.

What are the most common late effects?

The risk of developing a particular late effect is influenced by many factors. These factors include:

• The type of cancer and where in the body it was located
• The type and amount of treatment
• The area that was treated
• The child’s age while undergoing treatment
• Genetic factors or health problems that the child had before the cancer diagnosis

Late effects may affect bones, organs or tissues (physical effects); feelings, mood or actions (psychosocial effects); or thinking, memory and learning (cognitive effects). Some of the more commonly identified late effects interfere with normal function of the heart, lungs, fertility, thyroid, and brain, as well as the development of second cancers.

What are second cancers?

Studies have shown that as childhood cancer survivors become older, they have a slightly higher risk of developing a second cancer compared to people their same age in the general population. Those who are at increased risk include people who received certain chemotherapy drugs, people who received radiation therapy (especially at a young age) and people who have a history of cancer in their family. It is important for survivors to know and understand their medical history, and to understand what type of cancer screenings are appropriate based on their sex, age and treatment history.

What about insurance for cancer survivors?

It is very important for cancer survivors to have regular, life-long medical care.

All children are allowed to remain covered by their parents’ insurance policy until age 26. Beginning January 1, 2014, the Affordable Care Act made it possible for every American to purchase affordable health insurance. There can be no restrictions for patients with a preexisting condition. Please visit the Covered California website for information about applying for medical insurance.

We also encourage our survivors to investigate medical insurance options through their employers or schools and colleges.

Social workers are core team members of the After Cancer Survivorship Program and can make suggestions for insurance options. It is most important to never have a lapse in medical coverage, if at all possible.