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Survivorship

Survivorship Care in Connecticut

The HEROS Clinic at the Yale School of Medicine is the only specialty clinic in Connecticut to focus on the special healthcare needs of childhood cancer survivors. For more information, consult the HEROS Clinic brochure, or call 203-785-4640 to speak to a staff member or make an appointment.

Introduction to Long-term Follow-up

Long-term follow-up for childhood cancer survivors typically begins about two years following completion of therapy. In long-term follow-up, the focus shifts from being a "cancer patient" to being a "cancer survivor". The goal is to help the survivor stay as healthy as possible and to do well in school or at work. It is important for all survivors to continue to have regular medical care for life. Care may be provided by:

• The same doctor or clinic where the original cancer treatment was given
• A specialized Long-Term Follow-Up Program for childhood cancer survivors
• A healthcare provider in the local community (often working in partnership with the original treatment center)

No matter where long-term follow-up care is received, it is important for the survivor to learn about the treatment they received and the follow-up care that is needed in order to stay in the very best possible health.

The Treatment Summary

In order for a healthcare provider to determine what follow-up care a survivor needs, it is important to have a summary of the treatment that was given. The survivor should ask for a treatment summary from the hospital or clinic where they received their cancer treatment. The treatment summary should be kept in a safe place, and a copy should be given to all healthcare providers involved in the survivor’s care.

The Follow-up Schedule

Most childhood cancer survivors need long-term follow-up visits about once a year, although the schedule may vary depending on individual circumstances. Long-term follow-up visits should include a comprehensive review of the survivor’s health status and a check for any specific problems that the survivor may be at risk for (depending on the therapy received). The Children’s Oncology Group has developed Long-Term Follow-Up Guidelines to assist healthcare professionals in providing ongoing follow-up for childhood cancer survivors.

Between Visits

Childhood cancer survivors should identify a local primary healthcare provider that they can visit or call if they are injured or sick. If a problem comes up that may be related to cancer treatment, the primary healthcare provider can discuss this with the long-term follow-up team.

Late Effects After Treatment for Childhood Cancer

Problems related to cancer treatment that occur or persist after treatment is completed are known as "late effects." Fortunately, most long-term survivors don’t have serious late effects, but it is important to catch any problems early. Thinking about developing late effects after surviving childhood cancer can be anxiety provoking. But most survivors will NOT develop serious complications. And if they do occur, it is best to catch them early, so that treatment can begin right away. This is why ongoing follow-up care for childhood cancer survivors is so important.

More on Survivorship

The HEROS Clinic is supported by the Tommy Fund, the Yale School of Medicine Department of Pediatrics, and the Connecticut Challenge.