At the Hyundai Cancer Institute at CHOC Children’s, long-term follow-up care involves yearly visits with a multidisciplinary team of oncology specialists to evaluate and monitor for potential late effects of a patient’s disease or therapy. All aspects of the survivor’s life is taken into consideration including physical, emotional, cognitive areas. Our survivors begin attending our After Cancer Treatment Survivorship Program when they are five years past the date of diagnosis and two or more years off therapy. 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. Finding and paying for ongoing health care can be a challenge for some survivors. Today, children are allowed to remain covered by their parents’ insurance policy until age 26. We encourage our survivors to seek medical insurance through their employers or schools / colleges if they are not able to be covered by their parents. There are a variety of state and federal programs that survivors may qualify for. Social workers are core team members of 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”
Cure Search for Children’s Cancer