Most people have a personal connection to cancer. In fact, an estimated 1.7 million people in the United States will be diagnosed with cancer this year. But there are several lesser-known types of cancer that many people do not know about which can make diagnosis and treatment decisions more challenging. One example is a closely related group of rare blood cancers known as myeloproliferative neoplasms, or MPNs.
MPNs are rare blood cancers in which the bone marrow functions abnormally, affecting the body’s blood cells. There are several types of MPNs, including myelofibrosis (MF), polycythemia vera (PV), and essential thrombocythemia (ET). While MPNs are progressive blood cancers that can occur at any age, they tend to be more common in older adults. Estimates of the prevalence of MPNs vary, but data suggest there may be as many as 200,000 people in the United States living with these diseases.
MPNs are serious, chronic, and progressive, but largely unknown, as most patients and caregivers have never even heard of an MPN prior to diagnosis. Since talking to a healthcare provider about MPNs can be overwhelming, here are three tips to help guide those challenging and important conversations:
Review the NCCN Guidelines
The National Comprehensive Cancer Network (NCCNÂ®) – an alliance of leading cancer centers devoted to patient care, research, and education – developed a set of guidelines that patients, caregivers, and doctors can reference for important MPN information such as disease explanations, symptoms and diagnosis details, disease monitoring and management information, supportive care techniques, and more. These guidelines, developed by experts in the field, can help enable people living with an MPN and their caregivers to take a more active role in disease management and have informed conversations with their healthcare team. To read these guidelines, please visit NCCN.org/patients/MPNs.
Connect with Others
“MPNs tend to be a misunderstood disease,” said Matthew W., who has been living with PV for more than 10 years. “Since MPNs are rare, it can be hard to connect with others who truly understand what you are going through.” Given his health history, Matt is passionate about advocating for the MPN community and even formed a support group in his area to help people diagnosed with MPNs.
There are also support groups and online communities for people living with MPNs. Additionally, Voices of MPN offers information and resources on MPNs for people impacted by these diseases.
Use MPN tracker tools
If you are living with an MPN, you may already know you have a progressive condition. Tracking your MPN on a regular basis can help you identify changes in your health and help ensure that you are having those important conversations with your healthcare professional. By using the Voices of MPN tracker tool, you can track your symptoms, blood counts, and past procedures.
Following these three tips can help you take control of a disease that, at sometimes, can feel out of your control.