Al was diagnosed with Non Hodgkin’s Lymphoma at age 11. The tumors in his chest had been misdiagnosed as asthma, and by the time he was taken to Cincinnati Children’s Hospital, his condition was critical. Al underwent treatment for about a year and had follow-up visits for five years. Everything went well, and Al’s health was excellent. He was very active physically, playing basketball regularly, and he did not smoke.

When Al was almost 18, he and his mom Regina enrolled in Cincinnati Children’s Hospital’s Five Plus Clinic. His age was not an issue as the Clinic sees childhood cancer survivors of any age.

Al says he gets good care at the Clinic. “The doctors and nurses checked everything. They talked to me about how I am feeling about going through cancer, especially since I almost died and it was scary. They gave me and my mother a notebook with all the facts about my cancer and my treatment. The notebook explains what side effects I might get in the future so my mom and I can watch out for them. We took the notebook home and read it over.

“There’s a rumor that if you had cancer you can’t have kids, so no one can get pregnant from you. Well, that is not true! The doctors explained that.

“Basically, the doctors said I should never smoke, not gain too much weight, and keep up my exercise," Al said. “I just need to keep myself healthy.”

Al goes to the Five Plus Clinic about once a year even though he hasn’t had health insurance since he turned 18. The Clinic, which is supported by fundraising, provides care to all survivors regardless of ability to pay.

Have Follow-up Care for Life

Your follow-up care plan is designed to prevent and manage complications, check for signs of problems, and help you access the services you need for medical, emotional, educational, and other issues. Here are answers to basic questions you may have:

Where do I find follow-up care?

Long-term follow-up care may be available at the hospital or clinic where you were treated, from a doctor or nurse working in partnership with your treatment center, or from your family doctor. Here are some sources of follow-up care information:

	Late Effects Directory of Services, from the Children's Oncology Group (COG).
	Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers, from the COG. Developed as a resource for clinicians. Take these guidelines to your doctor.
	Survivor Follow-Up Clinics, from the Ped-Onc Resource Center.
	Long-Term Follow-Up Clinic from Beyond the Cure.
	LIVESTRONG Survivorship Center of Excellence Network, funded by the Lance Armstrong Foundation. A network of adult survivorship clinics located in National Cancer Institute-designated Comprehensive Cancer Centers. Guidelines for childhood cancer survivors are often not the same as those for young adults who have had other types of cancer.
	Passport for Care, an Internet-based resource for childhood cancer survivors and caregivers, is in development by the Texas Children's Cancer Center and the COG. A survivor may input clinical care information, and the program will generate a tailored list of possible side effects, follow-up guidelines, and information and care resources. Survivors' health care providers also may access the system.

What information should I get?

The President’s Cancer Panel recommends that long-term follow-up care plans include:

	A description of recommended cancer screening and other periodic testing and examinations, as well as the schedule on which they should be performed.
	Information on possible late and long-term effects of treatment and symptoms of such effects.
	Information on the possible future need for psychosocial support.
	Specific recommendations for healthy behaviors (e.g., diet, exercise, sun and virus protection, smoking cessation).
	Referrals to specific follow-up care providers, support groups, and/or the patient’s primary care provider.
	A list of Internet-based cancer resources and information and a list of telephone numbers for major cancer support organizations.

How do I organize all this information?

	Talk with your doctor or nurse. Ask if there is a nurse coordinator, social worker, or other health professional available to help you manage your care plan. Also see Hook up to Help.
	The LIVESTRONG Survivorship Notebook helps you organize your cancer experience. Order your free notebook.