Choosing a doctor to treat your multiple myeloma is one of the most important decisions you will make. Although a hematologist or oncologist can administer care, myeloma patients will live longer, according to the Mayo Clinic, if they are seen by a multiple myeloma specialist. Those who treat myeloma exclusively are able to stay up-to-date with the latest in research, which is happening at an extraordinary pace. Multiple myeloma is an incredibly complex cancer and no patient’s myeloma is the same. There are also over 14 drugs available to treat myeloma, so many doctors may time and stage drugs and treatments differently.
In most cancers, you can obtain good care from a general oncologist, but in myeloma, experience matters. You need an expert on your team! It is very common for patients to consult with a myeloma specialist at an academic center that is running myeloma clinical trials and then receive administration of that care at their local hospital. This type of teamwork provides expert advice with the convenience of local care. If you do not live close to an academic center, it is common for patients to travel periodically for consultations and evaluations. Your life is worth the train or plane fare!
Of course you will want doctors who you like personally and feel are attentive to your needs. Additionally, the following questions may help you understand how experienced they are in treating myeloma. Here are some suggested questions by experienced myeloma patients including Jack Aiello, Cynthia Chmielewski, Jim Omel, Eric Hansen and Jenny Ahlstrom.
1. How many myeloma patients have you treated in the last year? …..five years?
2. How many other myeloma doctors work at your facility?
3. What is your initial diagnostic workup for patients with an M-spike and/or bone lesions?
4. What is your initial treatment plan for a multiple myeloma patient with active disease judged to be standard risk? High risk by cytogenetics? For patients with renal issues?
5. What is your usual second line therapy for relapsed disease?
6. Who do you refer to, or confer with, if your treatment approach is not working?
7. Who do you collaborate with inside and outside of your facility? Are you included in the Myeloma Crowd Specialist Directory?
8. What open, accruing clinical trials for active, relapsed, and maintenance myeloma therapy are you aware of in your facility? Have you been the Principal Investigator on any myeloma clinical trials? If so, how many?
9. How do you stay current with advances in myeloma? What conferences do you attend and how do you change your practice accordingly?
10. Have you presented your research at any major hematology conferences?
Finding the right doctor for you and and your cancer is crucial for your survival. It is very common for myeloma doctors to vary in their opinions about treatment types, staging of medications and participation in clinical trials.
Ultimately, the path you take will be up to you. Find a doctor you trust, but also become educated about your own care. Being your best advocate will help you obtain your best outcomes.