If you’ve been diagnosed with multiple myeloma—a cancer of the plasma cell, which is a type of white blood cell made in the bone marrow—it’s important that you understand your diagnosis completely.
“It is a really complicated disease,” says Adriana Rossi, MD, associate clinical director of the Myeloma Center at Weill Cornell Medicine and NewYork-Presbyterian. “Most physicians have a hard time understanding what [myeloma is].”
For that reason, it’s also important to find the right myeloma treatment center and the right doctor so you can get your questions answered accurately. “Multiple myeloma is still considered a rare disease, so I think it’s important to at least seek an option at a center that sees a lot of myeloma patients,” says Dr. Rossi. Here are more important steps to take after receiving a multiple myeloma diagnosis.
When you’ve found the right doctor, bring a list of questions to your appointment. “Usually the moment you sit in a doctor’s office, all your questions disappear,” says Dr. Rossi. “Bring a family member with you. Two pairs of ears are always better than one.”
Sample questions to ask your doctor include:
What kind of myeloma do I have?
What stage is the myeloma?
What symptoms can I expect?
What’s your recommended treatment plan and why?
What side effects can I expect?
How can I avoid complications?
When you ask your questions, write down the answers, and repeat them back to your doctor. “I think as physicians we think we’ve done a good job of explaining, but until you really understand it, we haven’t done our job,” says Dr. Rossi. “So ask questions until it makes sense to you.”
During your treatment, be sure to keep your doctor in the loop about side effects, and don’t be afraid to ask more questions. It’s very important to have good communication with your doctor, especially during the first cycle of a treatment plan, says Dr. Rossi. “[If] a treatment either stops working or has side effects that the patient finds intolerable, that’s a reason for us to find a new line of therapy,” she says.
“If we don’t know [that] you’re having a symptom or you’re having a hard time with a medication, we can’t do anything about it,” says Dr. Rossi. “Often there are different options for treatment.”