Use this Survivorship Workbook to collect all the important information you need throughout diagnosis, treatment, follow-up care and long-term management of a blood cancer.
After you're in remission or your disease is under control, regular follow-up care is critically important. You'll need to visit your doctor for regular follow-up care. He or she monitors your health and looks for signs that you may need more treatment. Your doctor will also speak with you about monitoring for long-term effects or late effects.
The National Comprehensive Cancer Network (NCCN) produces Clinical Practice Guidelines in Oncology for most cancers, which many doctors follow. Their guidelines are among the most comprehensive and most frequently updated clinical practice guidelines available in any area of medicine. These guidelines will provide you with helpful information about your diagnosis to discuss with your doctor.
Your doctor will let you know how often you need physical exams and blood tests to check your blood cell counts. Your oncologist will screen you for cancer recurrence and the development of a secondary cancer. This may include bone marrow tests to detect cancerous cells. As time goes by, your doctor may suggest longer periods between visits.
Coordination between your oncologist and primary care physician is essential for you to get the best care possible. Some treatment centers feature survivorship or follow-up cancer care clinics (see below), which provide a comprehensive, multidisciplinary approach for monitoring and supporting cancer survivors.
It is important to keep all doctors’ appointments.
For each follow-up visit:
- Track each visit and write down what was discussed.
- Ask your doctor if and why certain tests are being done and what to expect.
- Discuss test results with your doctor.
- Ask for and keep copies of lab reports in a file folder or binder.
- Organize the reports in date order
- Find out if and when follow-up tests are needed.
- Mark upcoming appointments on your calendar
Your doctors will let you know how often you need to see them for physical exams and blood or bone marrow tests. Medical follow-up care gives doctors the chance to:
- Monitor your disease response to current or past treatments over a period of time
- Identify any recurrence of the disease
- Detect long-term or late effects
It is important that you take very good care of yourself.
Review the following tips to keep yourself healthy and happy.
- Keep all doctors’ appointments.
- Talk about how you feel with the doctor at each visit.
- Ask any questions you may have about side effects.
- You may be at a higher risk for infections. Follow the doctor’s advice for preventing infection.
- Eat healthy foods each day. It is okay to eat four or five smaller meals instead of three bigger ones.
- Contact the doctor about tiredness, fever or other symptoms.
- Do not smoke. Patients who smoke should get help to quit.
- Get enough rest.
- Exercise—but first talk with your doctor before starting an exercise program.
- Keep a healthcare file with copies of lab reports and treatment records.
- Have regular cancer screenings.
- See your primary care doctor to keep up with other healthcare needs.
- Talk with family and friends about how you feel. When family and friends know about cancer and its treatment, they may worry less.
- Seek medical advice if you feel sad or depressed and your mood does not improve over time. If you feel sad or depressed every day for a two-week period, seek help. Depression is an illness. It should be treated even when a person is being treated for cancer. Treatment for depression has benefits for people living with cancer.
- Putting your thoughts and feelings into writing can be a way to reduce stress. You may use the following sample journal page, Feelings and Thoughts, and you can print as many copies as you need:
Some treatment centers feature survivorship or follow-up cancer care clinics, which provide a comprehensive, multidisciplinary approach to monitoring and supporting cancer survivors. It is helpful for a patient to be seen yearly at a long-term survivorship clinic specifically for cancer survivors, in addition to his or her regular visits to a primary care physician. Coordination between oncologists and primary care doctors is essential to provide the best care possible. If there is not a survivorship clinic in your area, ask your doctor how you can continue with the best follow-up care.
Some treatment centers offer comprehensive follow-up care clinics for childhood cancer survivors. To find one near you, visit The Pediatric Oncology Resource Center.
- Follow-Up Care for Childhood Cancer Survivors
- Download the PDF, Beyond Treatment.
- Download the free fact sheet, Long-Term and Late Effects of Treatment in Adults Facts.