• How long will it take for me to recover and feel more like myself?

• Is there anything I can or should be doing to keep cancer from coming back?

Coping with these issues can be a challenge. Yet many survivors say that getting involved in decisions about their medical care and lifestyle was a good way for them to regain some of the control they felt they lost during cancer treatment. Research has shown that people who feel more in control, feel and function better than those who do not.

Being an active partner with your doctor may be what you need to feel that control.

For other people this may be more than they want or can handle, so for them the best way to manage follow-up care is to get help from other members of their family /support care team.

Ask your doctor for a written follow-up plan

It always helps to know, up front, what will be required of you over the coming years. Generally, survivors usually return to the doctor:

• Every 3 to 4 months during the first 2 to 3 years after treatment


• Once or twice a year after that.

At these visits, your doctor will be looking for side effects from treatment and checking to see if your cancer has returned or spread to another part of your body.

Concerns to discuss with your doctor at follow-up appointments

It is important to be able to talk openly with your doctor. Both of you need information to manage your care. Be sure to tell your doctor if you are having trouble doing everyday activities, and talk about new symptoms to watch for and what to do about them.

At each visit, you may wish to review this list as a reminder of important issues to cover with your doctor.

• Report any new symptoms


• Report pain that troubles you


• Discuss physical problems that get in the way of your daily life or that bother you, such as fatigue, trouble sleeping, sexual problems, weight gain or loss
  
• Discuss other health problems you have, such as heart disease, diabetes, or arthritis


• Report medicines, vitamins, or herbs you are taking and other treatments you are using


• Discuss emotional problems, such as anxiety or depression, that you may have now or that you’ve had in the past


• Report changes in your family’s medical history, such as relatives with cancer


• Ask questions about things you want to know more about, such as new research or side effects

Strategies which have helped others with their follow-up care

Because everyone is different you may find some of these strategies helpful and others not. We have compiled a large list. Use those ideas that work for you.

• Ask someone to come with you to your doctor visits. A friend or family member can help you think about and understand what was said. He or she also may think of new questions to ask.

• Make a list of questions ahead of time and bring it with you.

• Take notes or ask if you can tape-record the answers.

• Ask your most important questions first, in case the doctor runs out of time.

• Don’t be afraid to ask for more time when you make your next appointment. Or ask the doctor to suggest a time when you could call and get answers to your questions.

• Ask to talk with the doctor or nurse in a private room with the door closed.

• Express yourself clearly.

• Describe your problem or concern briefly.

• Tell the doctor how your problem or concern makes you feel.

• Ask for what you want or need, for example, “I am tired most of the time each day. I've tried napping, but it doesn't help. My fatigue gets in the way of my daily life. What can be done to help me with this problem?”

• Tell your doctor if you need more information.

• Ask for booklets or other materials to read at home.

• Ask the doctor to explain what he or she said in terms you understand.

• Repeat back in your own words what you think the doctor meant.

• Ask your doctor or pharmacist about the best way to take your medicine and about possible side effects.


• Keep your own set of records about any follow-up care you have.

Why medical records are an important part of follow-up care

Be sure to ask your oncologist for a written summary of your treatment. In the summary, he or she can suggest what aspects of your health need to be followed.

It is important to share this summary with any new doctors you see, especially your primary care doctor, as you discuss your follow-up care plan.

What records are most important?

You will be getting many handouts from various medical team members that you will want to keep in one place. We also suggest that you keep the following information in your binder as well:

• The date you were diagnosed

• The type of cancer you had

• Pathology report(s) that describe the type and stage of cancer

• Places and dates of specific treatment, such as:
• Details of all surgeries
• Sites and total amounts of radiation therapy
• Names and doses of chemotherapy and all other drugs
• Key lab reports, x-ray reports, CT scans, and MRI reports

• List of signs to watch for and possible long-term effects of treatment

• Contact information for all health professionals involved in your treatment and follow-up care

• Any problems that occurred during or after treatment

• Information about supportive care you received (such as special medicines, emotional support, and nutritional supplements)

What are some resources for guidelines about follow-up care?

These organizations have follow-up care guidelines for some cancers. You can use them when you talk with your doctor - they aren't meant to contradict or take the place of your doctor's knowledge or judgment.

Cancer: Keys to Survivorship

Hosted by the National Coalition of Cancer Survivorship and the Leukemia & Lymphoma Society. This program teaches survivors, families, and caregivers the necessary skills to help live with, through, and beyond cancer. A series of seminars focuses on leading healthy lives, preparing for doctor visits, managing side effects, and handling insurance and employment issues. Seminars can be viewed online.

Children’s Oncology Group Long-Term Follow-up Guidelines

The Children's Oncology Group offers long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers at: http://www.survivorshipguidelines.org.

Life After Cancer Care

M.D. Anderson’s Cancer Center’s website lists follow-up guidelines for 15 different disease sites. Visit http://www.mdanderson.org/departments/lacc, and click on “Followup Guidelines by Disease.”

People Living With Cancer

The American Society of Clinical Oncology’s People Living with Cancer website has a series of follow-up care guides focused on breast, colorectal, and lung cancers.

The information in this section has been compiled from the National Cancer Institute’s publication “Facing Forward: Life After Cancer Treatments.” Please refer to this document for more detailed information.