Finding the Right Care for Myeloma
The past decade has brought significant advances in multiple myeloma treatment. Several new myeloma drugs have been added as treatment options, and a number of new (and better!) tests have been developed to help doctors monitor disease and select the best treatment for each myeloma patient. At the heart of these advances is a better understanding of how myeloma develops and progresses. These advances provide new options for myeloma patients and their doctors but may also make the process of managing myeloma more confusing; this means that selecting the right myeloma care team is more important than ever.
Multiple myeloma is rare, accounting for only about 1.8% of all cancers and around 10% of blood (hematologic) cancers. Because myeloma is rare, community doctors may never get a chance to treat a patient in their practices. If they do, the complexity of the disease—each myeloma patient is different—adds to the challenges a doctor may face. This is why it is important for myeloma patients to receive care from a myeloma specialist.
A hematologist is a doctor that specializes in treating people with blood diseases; an oncologist is a doctor that specializes in treating patients with cancer. Myeloma specialists, therefore, are a type of hematologist/oncologist that provides care for myeloma patients—and myeloma patients only! Choosing a myeloma specialist that has knowledge of and experience with the latest myeloma tests and treatments can boost your chance of treatment success. If seeing a myeloma specialist for all your myeloma-care visits is not an option, you might be able to coordinate your care so that you see a community hematologist or oncologist for your day-to-day care but consult with a myeloma specialist as needed.
Finding a specialist who is right for you
If you decide to seek care from a myeloma expert, what’s the best way to find one that suits your needs and preferences? There are several sources of excellent myeloma care. Even if your day-to-day care is not provided by a specialist, it may be beneficial, especially when treatment is about to start, or when your treatment plan needs to be revised, to get a second opinion from a specialist.
Before making a final decision about your doctor and treatment team, it is helpful to do some research. Several organizations have online resources for finding and making appointments with myeloma specialists. The MMRF has developed an online tool that patients in the United States and Canada can use to locate a treatment center. You can also ask your primary care doctor to recommend a myeloma specialist in your area. Or you could ask your insurance provider for a list of in-network specialists and their affiliated treatment centers. Finally, the American Society of Hematology has a search page: just select “Multiple Myeloma” from the pulldown list in the “Clinical Interests” field, and you’ll get a list of myeloma specialists in your area.
Seeking care at a specialized treatment center
Different doctors often have different opinions about treatment plans and the possibility of participating in a myeloma clinical trial. Treatment centers that provide care to greater numbers of myeloma patients have been shown to achieve better results (in terms of length of remission and quality of life) than treatment centers that manage fewer myeloma patients. A specialist at a high-volume medical center—for instance, a center at a university—is more likely to see a greater number of myeloma patients, be more familiar with different treatment options, and thus be able to achieve better results for his or her patients. A hematologist-oncologist in the United States sees, on average, two new multiple myeloma cases per year. This means that their experience with myeloma may be limited. Academic centers are hubs of teaching and research where new discoveries are made. Specialists at these centers are more likely to be current on the latest guidelines and research for myeloma diagnosis, treatment, and care.
The MMRF is affiliated with 23 leading academic centers that have excellent myeloma care teams and see a high volume of myeloma patients. These members of the Multiple Myeloma Research Consortium (MMRC) can provide excellent myeloma care (Find an MMRC Location). You can also speak to trained Patient Navigators in the MMRF Patient Navigation Center at 888-841-MMRF(6673) who can connect you with one of our MMRC centers, answer any questions you have, help you learn more about clinical trials, and provide the right resources to help in your fight against myeloma.
In addition, certain cancer centers have been given special status by the National Cancer Institute (NCI). These NCI-Designated Cancer Centers or NCI-Designated Comprehensive Cancer Centers are recognized for their efforts to uncover how cancer begins and progresses, and for their work toward discovering new drugs and treatments that can improve the lives of patients with cancer. These centers can deliver state-of-the-art treatments and provide access to promising clinical trials for eligible patients. There are 47 Comprehensive Cancer Centers and 15 Cancer Centers in the United States. You can click on this link to locate an NCI-Designated Cancer Center, to find information about the research and clinical trial programs at the NCI Comprehensive Cancer Centers, and to learn about community outreach and education programs.
Finding the right doctor and treatment center to help you on your myeloma journey is an important and personal decision. Becoming more informed about your care and finding a physician and care team you can trust are key steps in your care plan and important in achieving your best possible outcome for your myeloma.