Finding the right specialist and treatment center
Selecting a specialist and a treatment center are among the most important decisions you have to make as an individual with multiple myeloma (MM). Various factors—such as your diagnosis, location, insurance coverage, travel options, and other preferences—may influence this decision. However, you should also consider that because a specialist will have greater knowledge of the latest advancements, and more familiarity with difficult procedures, this may have a positive impact on your care. While you may not live close enough for a specialist located at a cancer center to be the sole source of your treatment, consulting such a specialist at important times and obtaining specific types of care at a specialized center may help you obtain the best care possible.
Finding a specialist
For diseases that are rare or particularly complicated, patient care and treatment quality can benefit from specialized medical understanding. MM is a relatively uncommon cancer, with only around 30,280 people diagnosed in the United States each year. In addition, MM is a complex disease. MM treatment is best provided by a hematologist, a specialistwho treats patients with blood disorders, or an oncologist, a doctor who specializes in cancer treatment. Ideally, treatment will be provided by a hematologist/oncologist (or heme/onc, specialist in blood cancers) who focuses on MM and will be aware of the latest research and up-and-coming treatment options. If seeing a hematologist is not possible, you can be treated by other medical specialists, who may consult with a hematologist.
How do you find the right hematologist or medical oncologist for you? The MMRF has an online tool that patients in the US and Canada can use to help find a treatment center. You can ask your primary care doctor to recommend hematologists/oncologists in your area who specialize in treating multiple myeloma. Also, your insurance provider can provide a list of in-network specialists and their affiliated treatment centers. Finally, the American Society of Hematology has a search page to “Find a Hematologist.” In the search tool, for “Clinical Interests,” select “Multiple Myeloma” to get a list of MM specialists and their centers. Even if you don’t receive your day-to-day care from a specialist, it’s particularly beneficial at the start of treatment, or when making changes to your treatment plan, to get a second opinion from a specialist about your disease.
Going to a specialized treatment center
Because MM is a complicated disease with many different genetic factors, treatment outcomes may be better with specialist care at a treatment center. Treatment centers that frequently see patients with MM have been shown to produce better outcomes in those patients than centers that see fewer MM patients. This may be due to these centers having experienced physicians who can tailor treatments to the needs of individual patients. Moreover, centers that perform difficult procedures more often are better at doing them. Getting a bone marrow transplant is a complicated process, and it may be worth traveling a little further to receive care in a center that is more experienced. It may feel a little uncomfortable to ask a potential specialist about his/her experience with treating multiple myeloma, but that information could ultimately benefit your treatment plan.
Because the scientific understanding of MM is rapidly advancing—thanks in part to organizations like the MMRF—it’s important choose a center that provides the most modern treatments. Certain centers are recognized for their extensive efforts to be at the forefront of new discoveries and understanding of cancer through research. The National Cancer Institute (NCI) recognizes the cancer centers that provide the most advanced cancer care and patient access to cutting-edge clinical trials by distinguishing them as “NCI-Designated Cancer Centers” or “NCI-Designated Comprehensive Cancer Centers.” In addition to the activities conducted by the NCI Cancer Centers, the NCI Comprehensive Cancer Centers provide community outreach and education programs. There are 47 Comprehensive Cancer Centers and 15 Cancer Centers in the United States. To locate an NCI-Designated Cancer Center, click here.
If your local center is not affiliated with the NCI and/or a medical school or university, it is important to ask if your specialist will be able to consult university specialists in your area or NCI researchers before and during the course of your treatment. Another important question to ask your potential specialist is whether the cancer center can sequence your genome, or bank your bone marrow samples. The ongoing MMRF CoMMpass Study is capturing the genomic information of more than 1,000 MM patients over the course of their disease, which will help in developing personalized treatment for each patient.
It’s important to understand the clinical trials that might be available to you during your treatment. Because clinical trials grant patients access to the most up-to-date knowledge and understanding about MM and the newest treatments, they are great options to consider throughout the course of treatment. The MMRF and Multiple Myeloma Research Consortium (MMRC) have a number of ongoing clinical trials for MM patients. To learn more about whichclinical trials might be best for you, talk to an MMRF patient support nurse and access the clinical trials finder online.
For more information, visit the following resources: