Living with Myeloproliferative Neoplasms
If you’ve recently been diagnosed with a myeloproliferative neoplasm, or MPN, you may have many questions about the disease, your treatment options, and how the diagnosis will affect your quality of life. The good news is that recent advances in research have allowed doctors to better understand MPN. As a result, in many cases, people are able to manage and cope with MPN as a chronic or long-lasting disease. It is very important for someone diagnosed with an MPN to work with their healthcare team to manage symptoms and to view their care with a long-term treatment approach.
About Myeloproliferative Neoplasms
Myeloproliferative neoplasms are a group of blood cancers caused by a mutation in the blood’s stem cells, which causes the bone marrow to make too many white blood cells, red blood cells, or platelets. MPN consists of a family of conditions that include polycythemia vera, essential thrombocythemia, and myelofibrosis.
If you’ve been diagnosed with MPN, your doctor may tell you that your disease may change from one type of MPN to another, or even into an acute leukemia. It is possible for essential thrombocythemia or polycythemia vera to change into myelofibrosis, and for any MPN to change into an acute leukemia over time. While it is important to know the type of MPN that you have, it is also possible that your diagnosis may fall between two types.
Research is rapidly growing in the understanding of MPN and leading to new treatments. By working with your healthcare team, you can take charge of your health and maintain your quality of life while living with this chronic disease.
Your Support Team
MPN is a chronic disease, which means you will need to build a support system that can help you cope with your disease for the rest of your life. Connect with other MPN survivors who can share ideas and advice in living with the disease. Talking with others who can relate may help provide an important sense of comfort and community since they can understand what you are going through. Your family and friends are another important part of your support team who can help you cope with and manage the disease. A friend or family member can also act as an advocate for you or as a second set of ears on doctor visits.
MPN is a chronic disease, which means you will need to build a support system that can help you cope with your disease for the rest of your life.
Living with MPN takes a team approach, even in your medical care. The members of your healthcare team will include your oncologist, primary care doctor, nurse, social worker, nutritionist, as well as other specialists, such as neurologists and cardiologists. There may be many different members of your overall support team. But it is important that everyone work together and be informed of your care and treatments in order to help you live the best quality of life.
Living with MPN
“Since MPNs are a rare disease, it is easy to feel alone and misunderstood,” says Sara Goldberger, LCSW-R, senior director of programs at the Cancer Support Community. “If you mention breast cancer, everyone knows what you have, but if you mention MPN, most people have never heard of it.”
Because MPN tends to progress slowly, people who have decided to watch and wait before beginning treatment may hear comments from friends or family, such as, “You have cancer but you’re not being treated for it?” This can be confusing, so be sure to bring up these concerns with your doctor, especially if you have symptoms that limit your quality of life.
Being able to express your feelings with others is an important part of coping. People with an MPN can find a support group and talk with other people who share similar experiences or speak with a counselor or social worker about the challenges of living with cancer. A counselor or social worker can help you cope by providing tips on making changes to improve your quality of life, learning to live with uncertainty, managing expectations, and taking a proactive approach to treatment and symptom management.
As you live with MPN, it’s important to remember that you can empower yourself and take charge of your own care. One way to do this is by keeping a treatment journal to let your healthcare team know how you are coping with the disease. The more you can talk with them in detail about living with MPN, the better they will be able to help you cope with symptoms and improve your quality of life.
Want to hear from someone who understands what you’re going through? Check out CancerSupportCommunity.org/MPNs to see videos of people sharing their experience of living well with an MPN diagnosis.
Excerpted with permission from Frankly Speaking About Cancer: Myeloproliferative Neoplasm (MPN) © Cancer Support Community. For more information about the Cancer Support Community, visit CancerSupportCommunity.org or call (888)793-9355.
This article was published in Coping® with Cancer magazine, May/June 2020.