Childhood Cancer

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Childhood Cancer Survivors

Chapter 7. Diseases

JOANNE QUILLEN, MSN, APRN, PNP-BC

 

The world breaks everyone and afterward, many are strong at the broken places.

— Ernest Hemingway, A Farewell to Arms

SURVIVORSHIP CONTINUES THROUGHOUT your life. Whether you develop any late effects from your treatment for childhood cancer depends on your disease, your age at diagnosis, your sex, the treatment received, genetic predisposition, and complications during treatment. For many cancers, treatment toxicity has lessened over the years; for others, eliminating the cancer came at a higher price with late effects that can affect future health and well-being.

This chapter is divided into sections of the following major cancers of childhood and adolescence (in alphabetical order), including brief description of the cancer, treatments, and possible late effects, including:

  • Acute lymphoblastic leukemia (ALL)

  • Acute myelogenous leukemia (AML)

  • Brain tumors

  • Ewing sarcoma

  • Hodgkin lymphoma (formerly called Hodgkin’s disease)

  • Neuroblastoma

  • Non-Hodgkin lymphoma (NHL)

  • Osteosarcoma

  • Rare cancers

  • Retinoblastoma

  • Rhabdomyosarcoma

  • Wilms tumor

Because many diseases are now treated with stem cell transplants (which includes bone marrow, stem cell, and cord blood transplants), see Section on Stem Cell Transplantation late effects at the end of the chapter.

Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, Version 6.0 (October 2023); http://www.survivorshipguidelines.org/) will help you better understand your risks based on the treatment you received and help you make choices that lessen your chances of developing a particular problem. For instance, if you are at increased risk for heart disease, you can decrease the full impact of this risk by eating a healthy diet, exercising regularly, and not smoking. You can also access Passport for Care online which allows survivors and family to find updated long-term care plans tailored to your specific treatment. This plan should be reviewed with your follow-up oncologist or health care provider when planning your specific long-term care. https://cancersurvivor.passportforcare.org

These Survivorship Guidelines will keep all medical caregivers updated on the follow-up necessary to maximize your health. Ask your oncologist or nurse practitioner to fill in a Summary of Cancer Treatment form from the website above or provide a treatment summary so you know which sections of the survivorship guidelines apply to you.

Adult survivors of childhood cancer are pioneers; researchers are still learning about effects of earlier treatments as survivors grow and age. The late effects from current protocols may not be completely understood for decades. At the time of diagnosis, it is not possible to predict all potential long-term effects. Even with known late effects, there is considerable variation from person to person. Just because it could happen does not mean it will happen for everyone.

Certain groups of children, adolescents, and young adult survivors are more at risk for side effects than others. Being aware of the possible late effects and getting thorough follow-up care will maximize your chance for a long and healthy life and prepare you to talk over any questions or concerns with your healthcare provider. All of the statistics in the following sections are from the National Cancer Institute (NCI) website: www.cancer.gov (Search childhood cancers).

Ask your oncologist or nurse practitioner provider to give you a copy of your detailed Cancer Treatment Summary to keep with your personal medical records at home. This is helpful if you move to a different town/city and need to find a new provider.

Late medical effects are difficult because there is so much unknown. The fear around late effects is a regular issue, as there are so many possibilities to watch for. Maintaining a positive relationship with my current care team and having access to my cancer treatment medical records, as well as staying aware of new research, have been helpful in alleviating the burden.

My treatment took place from age 4 to 6. I made frequent visits to the hospital most of grade school for checkups. Immediately following treatment, we continued routine bloodwork and follow-up visits, which became increasingly less frequent. My care team continued to follow-up with me until I was 18, at which point I was finally phased out of hospital visits. A week after my 18th birthday, my mom and I took our last trip to the hospital and walked out knowing it was the last one. It felt like stepping over a threshold into a new era. Now, my current team of doctors still follow up with occasional bloodwork.

 

Both of our girls had 6 months of VEC chemotherapy and PRN laser/cryotherapy as treatment for retinoblastoma. They have both had chemotherapy injections into their eyes. Our oldest had 3 rounds of IAC. All of this to shrink and kill the tumors on their retinas and prevent them from spreading to the brain. One of our girls will only have peripheral vision in her left eye with close to normal vision in her right. The other will likely have normal vision in both eyes.

 

Our oldest daughter donated her bone marrow to save her sister’s life. The bone marrow transplant was the hardest part of treatment. That is saying something, because chemotherapy was beyond brutal itself. During recovery from the transplant, our daughter couldn’t even get out of the hospital bed. She developed sores that started on the inside of her mouth and went all the way through her digestive and genitourinary systems. Despite antinausea medication, she vomited constantly. She also had periodic accidents - explosive diarrhea, bedwetting. She developed rashes during every chemotherapy treatment that were itchy and uncomfortable. Four years later, our daughter still sees her oncologist every three months for bloodwork and checkup. She goes to the survivor clinic for screenings every four months. She sees a cardiologist every six months due to the effect that the harsh chemotherapy had on her heart.

GlossaryAcute Lymphoblastic Leukemia

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