It’s important for patients with multiple myeloma to connect with a doctor who specializes in treating multiple myeloma as soon as possible after their diagnosis.
Multiple myeloma is uncommon, accounting for only about 1.8% of all cancers and around 10% of blood (hematologic) cancers. Because myeloma is uncommon, many community doctors may see few or no myeloma patients in their practices. In the US, even hematologist-oncologists—the specialists most likely to see a patient with multiple myeloma—on average see only two new myeloma cases per year. This means that their experience with myeloma may be limited.
Managing multiple myeloma is difficult, even for doctors who encounter myeloma patients in their practices: the complexity of the disease—each myeloma patient may display different disease features—adds to the challenges a doctor may face.
For diseases that are rare or particularly complicated, such as multiple myeloma, specialized medical knowledge is especially important. When considering potential doctors, don’t be afraid to ask about their experience treating multiple myeloma.
A multiple myeloma specialist who sees a greater number of myeloma patients, be more familiar with different treatment options, and thus be able to achieve better outcomes. 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.
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. Typically, a hematologist-oncologist who focuses on multiple myeloma will be aware of the latest research and up-and-coming treatment options.
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.
Seek a second opinion at any point in your journey
During treatment, several members of the healthcare team will be involved in your care.
The myeloma specialist is the healthcare team lead. Ultimately, treatment decisions will be based on this doctor's recommendations along with your goals and preferences.
A nurse practitioner and/or a physician assistant may serve as an extension of the myeloma specialist; one or more of these clinicians may meet with you during office visits, and any of them can answer questions you or your caregiver may have.
A clinical research nurse or infusion nurse usually administers the prescribed treatment, and a nurse coordinator relays patient or caregiver concerns to the team and can also treat some disease symptoms or treatment side effects.
The social worker can help connect you and your caregiver with extra support, including childcare, senior care, transportation needs, and accessing financial support.
If you decide to seek care from a myeloma expert, what’s the best way to find one that suits your needs and preferences? Several sources of excellent myeloma care are available.
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.
You can speak to trained Patient Navigators in the MMRF Patient Navigation Center at 1-888-841-6673 who can connect you with a myeloma specialist, answer questions, help you learn more about clinical trials, and provide the right resources to help in your fight against myeloma.
You may have several questions for your doctor. If you are not sure where to begin, here is a list of questions that can help get you on the right path to managing your myeloma.
What is my myeloma stage?
What are my cytogenetic abnormalities?
What is my risk of progression and relapse?
What treatment options should I consider? What are the risks and benefits of each? How will this decision affect future treatment options?
What can I do to prepare for treatment?
How will treatment affect my day-to-day routine?
Which lab values and test results are important to track for a response or to monitor for side effects?
Is there a clinical trial that might be better suited for my type of myeloma or prognosis?
What resources are available to me and my family?
What is the best way to get in touch with you for questions or emergencies?
