What to Know When Newly Diagnosed

If you or a loved one has just learned they have multiple myeloma, the diagnosis may come as a surprise. Chances are that you don’t know much — if anything — about this type of cancer, so you’ll likely have a lot of questions for your doctor as you take in the news and begin to make decisions about your treatment.

“The majority of patients have never heard of multiple myeloma,” says Krina Patel, MD, a myeloma specialist at MD Anderson Cancer Center. “They’ve all heard of melanoma [skin cancer]. The first thing we tell them is that multiple myeloma is a blood cancer.”

This lack of familiarity often makes a multiple myeloma diagnosis more difficult emotionally than other cancers. “This is a rare cancer and most patients have never heard of it before their diagnosis,” says Urvi Shah, MD, a myeloma specialist at Memorial Sloan Kettering Cancer Center. “It is more anxiety and stress because you don’t know what to expect.”

“Patients come in and ask, ‘What is my stage?’ They want to know if it’s early or late and what is going on,” Shah said. “But with myeloma and many blood cancers, it’s different. It’s not like solid tumors, and this causes confusion for patients.”

Because myeloma is a blood cancer, doctors don’t stage it in the same way they do with solid cancers like breast or prostate cancer. Blood cancers are in the blood and are therefore everywhere in the body. But that doesn’t necessarily mean that your cancer is worse or harder to treat. In the case of multiple myeloma, Patel says, “there’s not really a metastatic version.”

Doctors do use a staging system that’s based on blood test results and other things to tell them if the cancer is high risk or not. Those test results can help you and your doctors understand what to expect and how to best treat the myeloma. No matter the stage, multiple myeloma is considered a lasting (chronic) condition.

“Multiple myeloma is considered incurable and a long-term issue,” Shah said. “Now with the latest therapies, we are curing a small subset but not the majority. We still tell patients it is most likely incurable. I hope that will change in the near future. We’re coming close, but we’re not there yet.”

Even though multiple myeloma is almost always a lifelong condition today, there has been lots of progress in treating multiple myeloma in recent years. A person diagnosed with multiple myeloma will have lots of good treatment options.

“Sometimes patients know it’s not curable and get depressed,” Patel said. “They don’t realize at this point it is very treatable. We can’t cure the majority. But we can prolong life for years to decades with therapy that’s tolerable. They’ll be on therapy for the rest of their lives, but treatment doesn’t only prolong life. Quality [of life] is just as important.”

Myeloma treatment typically involves a combination of drugs. Patients newly diagnosed with multiple myeloma are often in pain and tired as a result of anemia, bone lesions, or other complications of the disease. Treatment doesn’t just fight the cancer, but it will often make you feel better, too.

“Most people, when they think of chemo, think of hair loss, nausea, staying in bed all the time,” Patel said. In multiple myeloma, it isn’t like that. “Treatment is really a way to improve quality of life.”

When people first come in, Shah says, “They may have had a delayed diagnosis. They may come in in a wheelchair.” Once treatment is started and the cancer responds as it usually does, she says, those same patients often are up and walking again.

When you have a new diagnosis of multiple myeloma, it’s a good idea to get to a specialist early on, says Jason Valent, MD, a myeloma specialist at the Cleveland Clinic.

“It’s a little easier for somebody like me because I only take care of myeloma patients,” Valent said.

Given many treatment options, new drug approvals, and ongoing clinical trials, it helps to have a specialist who’s on top of new developments as they come. A community doctor may see only a few myeloma patients per year compared to hundreds at a larger cancer center with myeloma specialists. While a doctor close to home can oversee day-to-day care when a larger center isn’t nearby, a specialist on your team can help guide treatment and consider all the options from afar, including new treatments.

“Even if you can’t see a specialist every month, it’s a good idea to have them in the background, especially at points of treatment decisions,” Patel said.

While multiple myeloma is unique, in some ways it’s similar to other cancers. Anytime there’s a new cancer diagnosis, there’s a lot to take in, learn, and consider. In addition to decisions about the cancer and its treatment, you’ll have personal choices to make, including who you want to tell about your diagnosis and when. There will be practical considerations, too, including learning what your insurance will cover and what it won’t.

“Any cancer diagnosis is a life-changing experience,” Valent said. “The emotions that go along with that can be some of most difficult things to deal with.”

Ask if your care team includes or can recommend counselors, psychologists, social workers, pain specialists, or others who can help you with various aspects of the disease and its care. As you face a new diagnosis of multiple myeloma, Shah recommends finding other things to focus on outside of the cancer and its treatment.

“Those who keep up a job or hobby and don’t let the disease define them seem to better manage,” Shah says. “It’s a marathon. Those who fixate and focus on the disease can suffer lots of anxiety and stress.”

“You’re going to be on some form of treatment for the rest of your life,” Valent said. While that’s different from many other cancers, “we treat myeloma in some ways like diabetes. You may take a pill or a shot for the rest of your life, but it’s reasonable to expect to keep the disease controlled, hopefully for long periods of time.”