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After Cancer Treatment Survivorship Program

Young adult cancer survivor with doctor

Life after cancer is filled with many questions and uncertainties.

The After Cancer Treatment Survivorship program at the Hyundai Cancer Institute at CHOC Children’s consists of a multidisciplinary team that provides comprehensive follow-up visits to evaluate your overall health concerns. Our specialists will also educate you and your family about the long-term effects of cancer treatment, fertility issues, education, employment rights and more.

At CHOC, we welcome all pediatric cancer survivors to participate in our survivorship program, even if you received cancer treatment elsewhere.

A Complete Approach to After Cancer Survivorship Treatment

US News and World Report Best Children's Hospitals Cancer A cancer diagnosis is disruptive. Your cancer survivorship is a time when the after-effects of treatment are addressed, and you and your family define your “new normal.” We cannot say that your life will return to what it was before cancer, but we are committed to ensuring that you recover to your fullest after your diagnosis. We provide the following comprehensive services to our survivors:

Monitoring for late effects of treatment

Most survivors of cancer will have at least one long-term side effect of their cancer or their cancer treatment. Surgery, chemotherapy and radiation therapy may cause problems with:

Heart
Lungs
Endocrine system (hormones)
Bone growth and strength
Hearing
Mouth (teeth and gum) health
Eyes
Cognitive function, such as memory, processing and concentration changes
Monitoring for cancer recurrence or development of a second cancer
Coordinating treatment with primary care and specialty care providers, including transition to a primary care provider when appropriate

Management of physical changes

Rehabilitation Services
— Occupational therapy
— Physical therapy
— Speech therapy
Prosthetic management
Pain management
Integrative health therapies such as acupuncture and meditation strategies

School reintegration/re-entry

School personnel and peer education
Evaluation of cognitive function
Individual Education Programs (IEP)
504 Plan

Healthful Behaviors and Creating a Wellness Plan

Guidance on how to define your “new normal”
Diet and nutrition
Exercise and other physical activity
Coping with fatigue
Managing stress and worry
Communicating your cancer experience with family and friends
Psychological and psychiatric care referral
Support group and patient/family education sessions

A personalized treatment summary and notebook with information related to your survivorship that can be shared with other doctors that includes:

Type of cancer
Type and dates of treatment provided
Results of key laboratory reports and scans
Side effects and major complications experienced
The number and/or title of any clinical trial participation
Name(s) and contact information for your cancer care provider

Learn more about cancer support services at CHOC.

A Team Approach for a Healthy Life After Cancer

Depending on the after-effects of your treatment, your appointments may include CHOC experts from our many other specialties such as neurology, orthopaedics, endocrinology, gastroenterology, hematology and more.

Your CHOC cancer survivorship team will also include respiratory therapists, nurses and nurse practitioners, social workers, psychologists, rehabilitation therapists, dietitians, pharmacists, speech and occupational therapists and child life specialists, as needed.

Beyond the clinic, we also provide educational workshops and seminars for our teen and young adult cancer survivors. Our goal is to provide survivors with the tools they need to advocate for themselves.

Late Effects of Cancer Treatment

Some cancer treatments can can cause long-term effects from surgery, chemotherapy or radiation. Learn more about the potential after effects from treatment, and the subspecialists that handle these areas.

Audiology

ome treatments can cause problems with hearing and how your ear should work. This is known as ototoxicity.

Chemotherapy treatments that can cause ototoxicity include carboplatin and cisplatin. Radiation therapy can also change how your ear functions.

Potential late effects of treatment include: hearing loss, ringing in your ears (tinnitus), a sense that you are moving when you are not (vertigo), or hardening of the tissues in your ear (tympanosclerosis or otosclerosis).

If you experience any problems with your hearing after getting treatment for cancer, you will be referred to an audiologist – a specialist trained to evaluate and treat problems with hearing, balance and other auditory disorders.

Cardiology

Some cancer treatments can cause problems with your heart. This is known as cardiac toxicity. Chemotherapy treatments that can cause cardiac toxicity include anthracycline agents like daunorubicin, doxorubicin and mitoxantrone. Radiation therapy can also cause changes in how your heart functions.

To reduce the damage that chemotherapy can cause, you may have been given a “cardio-protectant” like dexrazoxane (also known as Zinecard®). Even if you were given this drug, your heart may have still been damaged.

Potential late effects of treatment include:

• Enlarged heart (cardiomyopathy)
• Abnormal rhythm of your heart beat (arrhythmias)
• Changes in how your heart pumps blood to your body (left ventricular dysfunction)
• Changes to how your body is able to move blood through your body (carotid artery disease, subclavian artery disease, congestive heart failure)
• Painful heart movement (pericarditis)
• Changes to how blood flows through your heart (pericardial fibrosis, valvular disease, atherosclerotic heart disease).

Rarely, your heart may have been damaged to such an extent that you are at higher risk than others for heart attack (myocardial infarction).

Other conditions, such as a high lipid level in your blood (dyslipidemia) and high blood pressure (hypertension), can affect how well your heart works. If you are overweight, your heart can also have problems with normal function.

Your heart function can also be influenced by how your kidneys work. Therefore, if you are receiving treatment for your kidneys then you may also receive treatment for your heart.

If you experience any problems with your heart function after getting treatment for cancer, you will be referred to a cardiologist – a specially trained doctor to evaluate and treat problems with how your heart works.

Endocrinology

Some treatments can cause problems with how your endocrine system works. The endocrine system is made up of a lot of different glands in your body that communicate through special chemicals called “hormones.” There are many different types of chemotherapy treatments that can cause problems with your endocrine system. Radiation therapy can change how hormones work in your body.

Potential late effects of treatment are quite varied given the big role that the endocrine system plays in your body. Some of the problems you can experience include:

• Difficulties with having babies in the future (infertility)
• Changes in how you grow
• Reduced bone mineral density putting you at risk of having bone fractures
• Challenges in maintaining a healthy weight
• Changes in your period
• Feelings of extreme tiredness
• Problems feeling too cold or too hot
• Dry skin or brittle hair
• Changes in your sexual development and function
• Problems with blood sugar (diabetes) or blood lipid levels (dyslipidemia)
• Changes to the rhythm and speed of your heartbeat
• Problems with eye or other motor movement

If you experience any problems with your endocrine system after getting treatment for cancer, you will be referred to an endocrinologist – a specialist trained to evaluate and treat problems with the endocrine system.

Gastroenterology

Some treatments can cause problems with your gastrointestinal (GI) tract or liver.

Chemotherapy treatments that can cause problems with your liver include mercaptopurine (6MP), thioguanine (6TG), and methotrexate. Radiation therapy and bone marrow/stem cell transplantation can also change how your liver works.

Radiation therapy can also change how your esophagus (the tube from your mouth to your stomach) and intestines or bowel works.

Potential late effects of treatment include changes in how your liver or gallbladder works, difficulty swallowing (dysphagia) or narrowing of your GI tract, development of heartburn, or problems with constipation or diarrhea.

Depending on your treatment and family history, you may be at higher risk of developing colon or colorectal cancer in the future. If you are told that you are at increased risk, screening for these cancers will start sooner for you than for others your same age.

If you experience any problems with your gastrointestinal tract after getting treatment for cancer, you will be referred to a gastroenterologist – a specialist trained to evaluate and treat problems with the stomach, intestines, esophagus, liver, pancreas, colon and rectum.

Gynecology - Female Reproduction and Sexual Health

If you are a girl or young woman, some treatments can cause problems with your reproductive tract.

Chemotherapy treatments that can interfere with normal ovarian function include alkylating agents (busulfan, cyclophosphamide, ifosfamide and lomustine), heavy metal agents (carboplatin and cisplatin) and other drugs like dacarbazine and temozolomide.

Radiation therapy can also change how your ovaries may work in the future. It can also cause hardening of the tissues of your reproductive system.

Potential late effects of treatment include changes in how you grow and mature, fluctuations to the cycle of your period, sexual dysfunction, pelvic pain and difficulties having children in the future.

Depending on your treatment and family history, you may be at higher risk of developing cervical cancer in the future. If you are told that you are at increased risk, screening for this cancer may start sooner for you than for others your same age.

If you experience any problems with your reproductive tract after getting treatment for cancer, you will be referred to a gynecologist – a specialist trained to evaluate and treat problems with female reproduction and sexual function. You may also been seen by a specialist in endocrinology or in psychology, depending on your needs.

Male Reproduction and Sexual Health

If you are a boy or young man, some treatments can cause problems with your urinary and reproductive tract.

Chemotherapy treatments that can interfere with normal testicular function include alkylating agents (busulfan, cyclophosphamide, ifosfamide and lomustine), heavy metal agents (carboplatin and cisplatin) and other drugs like dacarbazine and temozolomide.

Radiation therapy can also change how your testicles may work in the future.

Potential late effects of treatment include changes in how you grow and mature, sexual dysfunction and difficulties having children in the future.

Depending on your treatment and family history, you may be at higher risk of developing testicular or prostate cancer in the future. If you are told that you are at increased risk, screening for these cancers may start sooner for you than for others your same age.

If you are a boy or a young man experiencing any problems with your reproductive tract after getting treatment for cancer, you will be referred to an urologist – a specialist trained to evaluate and treat problems with male reproduction and sexual function. You may also be seen by a specialist in endocrinology or in psychology, depending on your needs.

Ophthalmology

Some treatments can cause problems with vision and how your eyes should work.

Chemotherapy treatments that can cause changes to your eye function include the use of busulfan and steroids like dexamethasone and prednisone.Radiation therapy can also change how your eyes function if your eyes were part of the treated area. If you had eye or brain surgery as part of your treatment, it is also possible that you will experience vision deficits.

Potential late effects of treatment include clouding of the lens in your eye (cataracts), changes to your vision, dry eye, chronic eye irritation or pain, excessive tearing, light sensitivity and poor night vision.

If you experience any problems with your sight after getting treatment for cancer, you will be referred to an ophthalmologist – a specialist trained to evaluate and treat problems with your eyes and your vision care.

Pain Management

Cancer treatment can result in chronic pain as a result of chemotherapy, radiation, other cancer treatments or surgery that you had.

Chemotherapy treatments that can cause changes to how your nerves work include carboplatin, cisplatin, vinblastine and vincristine. Steroid treatments, such as dexamethasone and prednisone can change the structure and function of your joints making it more painful to move.

Radiation therapy can change the structure of your bones making it more painful to move or putting you at higher risk of having a bone fracture in the future.

Bone marrow/stem cell transplantation can cause future joint or bone pain.

If you experience any problems with pain after getting treatment for cancer, you will be referred to a pain management specialist who is trained to evaluate, treat and manage your pain. You may also been seen by a specialist in rehabilitation, neurology or psychology to help manage your pain.

Nutrition Services

A healthy, balanced diet is as important in survivorship as it was during active treatment for cancer.

During cancer treatment, you may have had problems eating because of nausea, vomiting, diarrhea or constipation, mouth sores or changes in how food tasted. Most of these side effects will stop once treatment ends. However, cancer treatment may have some lasting side effects that may interfere with eating including:

Poor appetite
Dry mouth
Change in taste or smell
Trouble swallowing

If needed, our team will refer you or your child to a CHOC registered dietitian in our clinical nutrition department to look at your medical history and your current health to develop a special plan that will help you make good daily food choices and plan healthy meals. They can also help if you are not at a healthy weight.

Frequently Asked Questions

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

At the Hyundai Cancer Institute at CHOC Children’s, 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.

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.

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 the most common late effects?

The risk of developing any one 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.

Where can I find out more about long-term follow-up?

There are many resources available for cancer survivors and we recommend:

“Long Term Follow up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers – from the Children’s Oncology Group”
www.survivorshipguidelines.org

Cure Search for Children’s Cancer
www.curesearch.org

National Comprehensive Cancer Network
https://www.nccn.org/

Children's Oncology Group
https://childrensoncologygroup.org/

National Cancer Institute
www.cancer.gov

Preparing for Your Appointment

For more information about the After Cancer Treatment Survivorship Program or to make an appointment, please call 714-509-4348.

What to bring with you:

Health insurance information
Name and telephone number of primary care physician
Medication list (including medication strength, amounts taken and over-the-counter medications) or bring original prescription bottles
Allergy information
Immunization records
Medical records from visits with other doctors or medical experts
A list of questions you may have for the physicians

Hyundai Cancer Institute Clinic

Building: CHOC Clinic | 1201 W. La Veta Ave., 2nd Floor | Orange, CA 92868 | 714-509-8636

Make an Appointment

For more information about the After Cancer Treatment Survivorship Program or to make an appointment, please call 714-509-4348.
What to bring with you:

Health insurance information
Name and telephone number of primary care physician
Medication list (including medication strength, amounts taken and over-the-counter medications) or bring original prescription bottles
Allergy information
Immunization records
Medical records from visits with other doctors or medical experts
A list of questions you may have for the physicians