Follow-Up Care for Myelofibrosis

If you’ve been diagnosed with myelofibrosis, a kind of cancer that affects your blood, follow-up care can be almost as important as your initial treatment.

Like many other types of cancer, myelofibrosis can come back. Some people go decades without symptoms or any other issues, while others get a more aggressive cancer like leukemia. And side effects from treatments for myelofibrosis, especially a stem cell transplant, can show up well afterward, too.

Even if your cancer is gone or not causing problems, you'll probably see your doctors fairly often, including:

  • A cancer specialist
  • A blood specialist
  • Your primary care physician

 

Routine Visits

Your medical team will want to keep a close eye on the number of red and white blood cells and platelets you have. You'll also want to be on the lookout for any familiar symptoms of myelofibrosis, like anemia (when your body isn't making enough red blood cells).

Signs of anemia include:

  • Feeling tired or weak
  • Shortness of breath
  • Dizziness
  • Headache
  • Cold hands or feet
  • Pale or yellow skin
  • Unusual heart rhythm
  • Chest pain

If you or your doctor notices any of these, your doctor probably will recommend imaging scans, like an MRI or CT scan, and bone marrow tests.

Communication with your doctors during these visits is key:

  • Make a list of questions before your appointment.
  • Take notes about what the doctor says. Repeat aloud what you hear if you need to make sure you heard it right.
  • Ask why any tests are being done, and find out what the results will mean.
  • Request copies of lab reports, and store them in order.
  • If possible, take a loved one with you to be an extra set of ears.

Call your doctor about any new issues or problems that won’t go away as soon as possible. Don’t wait until your next appointment.

Survivorship

Sometimes life can be hard after treatment for cancer. You might feel depressed, anxious, or lonely. “Survivorship” is a newer form of follow-up care that can help support your emotional and mental health.

For example, you might have:

  • Fear of the cancer returning
  • Changes in personal relationships
  • Financial hardships
  • Employment issues
  • Loss of fertility or other physical changes
  • Spiritual issues
  • Parenting concerns
  • Questions about your relationship with your cancer team

Programs like this also offer practical information about what you can expect from your doctors after treatment. The American Cancer Society’s National Cancer Survivorship Resource Center has information about them online, or your doctor can help you find one.

A good survivorship plan should include:

  • A treatment summary
  • A description of the follow-up appointments and tests you'll need and how often
  • Tips on self-care
  • An understanding of possible side effects of treatment and how to manage them
  • Ways you can address your physical and mental health

 

WebMD Medical Reference Reviewed by Laura J. Martin, MD on May 07, 2019

Sources

SOURCES:

University of Iowa Hospitals and Clinics: “Idiopathic Myelofibrosis.”

Oncolink: “All About Myelofibrosis.”

Canadian Cancer Society: “Idiopathic Myelofibrosis.”

Leukemia & Lymphoma Society: “Follow-Up Care and Survivorship.”

Leukaemia Care UK: “Myelofibrosis.”

American Cancer Society: “Life After Cancer,” “National Cancer Survivorship Resource Center.”

The National Academies of Sciences, Engineering, and Medicine: “From Cancer Patient to Cancer Survivor: Lost in Translation.”

Mayo Clinic: "Anemia."

© 2019 WebMD, LLC. All rights reserved.