Childhood Cancer

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Childhood Cancer Survivors

Medical follow-up

Until recently, guidelines for comprehensive follow-up care after treatment have not been in general use. With increasing numbers of long-term survivors, it became apparent that these young men and women often faced medical and psychosocial effects from their years of treatment and needed long-term follow-up. As a result, many institutions are establishing follow-up clinics to provide a multidisciplinary team that monitors and supports survivors.

I was diagnosed with Hodgkin’s 10 years ago. I go [to the follow-up clinic] every 6 months. I like going—it makes me feel comfortable and safe. I have a physical exam, a CBC (complete blood count) and differential, thyroid function, electrolytes, liver functions, creatinine, and chemistries. I had a baseline mammogram when I was 23 and now I have one every 2 years. There is no breast cancer on either side of my family, so that’s good. I also do monthly breast exams. Nobody ever taught me how to do it properly, so I looked at an instructional video. But once, at a work training session, they passed around one of those practice breasts. I was so glad to be able to actually feel the small lump in it. I wish they’d use them in follow-up clinics to teach every girl diagnosed with Hodgkin’s how to examine her breasts.

The first step you can take to ensure you get good follow-up care is to ask the oncologist or clinical nurse practitioner who treated you to fill in the Cancer Survivor’s Treatment Record at the back of this book. Or you may already have a written summary of your treatment and the complications that occurred during treatment from the institution that treated you. This permanent record will provide all future healthcare providers with the health history they need to work with you to maximize your health. The second step is to use the information in Chapter 1 , to pick a healthcare provider. Then you should regularly schedule follow-up exams. Your yearly medical care should include the following:

  • Physical examination

  • Complete blood count (CBC)

  • Urinalysis

  • Recommended immunizations

  • Manual breast examination for women

  • Testicular examination for men

  • Screening tests (e.g., mammogram, stool check) as recommended by your healthcare provider

Other medical tests you will need for follow-up depend on the treatment you received for your cancer. You and your healthcare provider can consult the tables at the end of Chapter 6 , and the Children’s Oncology Group Long-Term Follow-Up Guidelines ( www.survivorshipguidelines.org ) for the type of treatment you had to see what tests may be necessary in the future.

My daughter was diagnosed with Wilms stage II when she was 3 years old. She had surgery and 18 weeks of chemotherapy (actinomycin D and vincristine). The doctor told us the follow-up was primarily to check on the growth and functioning of her remaining kidney. The first year after treatment ended, she had appointments every 3 months that included x-rays, blood work, urinalysis, ultrasound, and a physical exam. The next 2 years she went every 6 months and had the same tests. Her remaining kidney has grown larger and is doing well. Now we’ve graduated to just a yearly visit that only includes an ultrasound, urinalysis, and exam. She’s doing great.

You can safeguard your good health by getting evaluations from experts in treating the late effects of childhood cancer. These experts will know what you are at risk for and will have the most current information. They will give you appropriate tests to ensure early detection and intervention, should a late effect occur. Delayed effects from treatment occur in only some survivors, and they range from mild to severe. Many of these effects are easy to detect and treat, but they can occur years after treatment, so you need lifelong surveillance.

Many survivors do not receive follow-up care from experts in the late effects of childhood cancer. If you leave home to work or attend college, you begin making your own medical decisions. In some cases, you may not know the treatments you had or the medical surveillance you need to check for possible late effects. You may think the chances of developing problems from your treatment are so slight that they don’t warrant attention. Or you simply may not want to think about it.

I had Wilms tumor over 20 years ago, and to this day, I take my health for granted. I don’t even do monthly breast exams. I also don’t go for checkups as often as I should. I think I’m supposed to go twice a year, but I only go once to my regular internist. I think the chances of the cancer coming back are next to nothing. I just don’t worry about it, or even think about it. And to tell you the truth, I know very little about Wilms tumor. I’ve never been interested or even curious to learn about it. However, I’m not that way about other health issues in my life.

• • • • •

I don’t go to a follow-up clinic now that I’m in college. I switched to a family practice doctor. I know I had six different drugs in rotating cycles for 18 months, but I don’t know what the drugs were. I will never smoke. But I don’t eat the right foods—I really don’t like vegetables. I guess that’s pretty terrible. I also don’t exercise regularly.

However, seeing an expert in the late effects after childhood cancer will allow you to receive:

  • Help with transitions from treatment to post-treatment and from child to adult care.

  • Screening and health promotion to help prevent and manage late effects.

  • Education and information needed to maintain health.

After my diagnosis of non-Hodgkin’s lymphoma, I went for a yearly chest x-ray, blood work, and physical exam. They would ask me a few basic questions, then I’d leave. Nine years after the initial diagnosis, I developed breast cancer. Now I get a yearly mammogram, pelvic ultrasound, blood work, x-rays, and more questions. They pay a lot more attention to me now.

• • • • •

I had retinoblastoma when I was 2, rhabdomyosarcoma when I was 12, and breast cancer when I was 22. The center where I was treated has no follow-up program, unfortunately. It really disturbs me. I’ve been trying to find a place to go because I think it’s important, and there are issues that bother me that I’d like to talk over with a knowledgeable person.

Many survivors (or their parents) take an active role in their own follow-up care. They search out follow-up programs in nearby or distant cities and travel to get the care they need. They can also arrange to have phone consultations with experts in late effects.

The hospital that treated my daughter does not have a comprehensive program to track survivors. I just relied on our hometown pediatrician. However, as more and more late effects became apparent, we realized we needed someone else to quarterback her care. So now, once a year, we fly to an excellent follow-up clinic. During the year, if any questions arise, our pediatrician can call them for expert advice.

Some survivors keep copies of their key medical records. Many hospitals are merging with other healthcare institutions, and some are being bought by large corporations. Finding records at these institutions years after your treatment for cancer may become increasingly difficult, so request a copy of yours as soon as possible.

I have copies of my complete medical records. I have all the doctors’ notes, the pathology reports, treatment records, and CT (computed tomography) and MRI (magnetic resonance imaging) reports. My parents asked me why I was gathering all that up. I told them that when I went in for a liver biopsy, the doctor had not been sent the report from the CT scan. So I pulled my copy out and he said, “Oh, good.” He was able to determine the specific area to take the sample from. Sometimes the records don’t get sent to the proper place, and sometimes they get lost. The first two volumes of my records are in a vault 20 miles away from Children’s. Once I waited 3 hours for treatment while they couriered them over. So now, I always carry my own.

Doctors, researchers, nurse practitioners, and psychologists are learning more about the late effects from treatment for childhood cancer, although there are still many gray areas. Recommendations for your follow-up care will change over time as more is learned about late effects. For this reason, it is very important to keep in touch with a center that specializes in follow-up care.

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