Follow-up care and survivorship for young adults

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. They will monitor your health and look for signs that you may need more treatment. Your doctor will also speak with you about monitoring for long-term or late effects of blood cancer treatment.   

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 to monitoring and supporting cancer survivors. 

Keep all doctor 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 

Take 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
• Follow the doctor’s advice for preventing infection, as you may be at a higher risk
• 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 any other symptoms
• Do not smoke. Patients who smoke should get help to quit.
• Get enough rest
• Exercise, but 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.
• Seek medical advice if you feel sad or depressed every day for a two-week period.  Depression is an illness. 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, on page 36 of our booklet, Each New Day: Ideas for Coping with Blood Cancer, and you can print as many copies as you need: 

Survivorship clinics 

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 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. 

Resources for survivors 

Federal and State Laws: Laws such as the Americans with Disabilities Act (ADA) protect qualified cancer survivors from job or insurance discrimination. For more information, visit the ADA website and the Cancer Legal Resource Center website.  

Vocational rehabilitation: Many states offer vocational rehabilitation services to qualified individuals. Eligibility and services vary by state. You can find a list of state offices at the Office of Special Education and Rehabilitative Services website.  

National advocacy organizations: Blood Cancer United Advocacy 

Advocacy organizations offer support, information, and advice for cancer survivors. Other groups include: 

• The Centers for Disease Control and Prevention's (CDC's) Cancer Survivorship
• Livestrong Advocacy
• The Office of Cancer Survivorship of NCI 

The Children's Oncology Group: The group has established Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers. Although designed for children, many recommendations can be adapted as a starting point for adults. 

The National Comprehensive Cancer Network (NCCN): 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.

See other helpful organizations for more resources.