What to Know When Newly Diagnosed
If you or a loved one has just found out that they have multiple myeloma, the diagnosis may come as a surprise. Chances are, you don’t know much, if anything, about this type of cancer, so you will likely have lots of questions to ask your doctor as you hear the news and get started. start making decisions about your treatment.
“The majority of patients have never heard of multiple myeloma,” says Krina Patel, MD, 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 cancer of the blood. “
This lack of familiarity often makes a diagnosis of multiple myeloma 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’s more anxiety and stress because you don’t know what to expect.”
It’s a different kind of cancer
“Patients come in and ask, ‘What’s my stage? They want to know if it’s sooner or later and what’s going on, ”Shah said. “But with myeloma and many blood cancers, it’s different. It is not like solid tumors, and it confuses patients.
Because myeloma is cancer of the blood, doctors don’t stage it the same way they do with solid cancers like breast or prostate cancer. Blood cancers are in the blood and therefore are everywhere in the body. But that doesn’t necessarily mean your cancer is worse or harder to treat. In the case of multiple myeloma, says Patel, “there isn’t really a metastatic version.”
Doctors use a staging system based on the results of blood tests and other things to tell them whether the cancer is high risk or not. These test results can help you and your doctors understand what to expect and how best to treat myeloma. Regardless of the stage, multiple myeloma is considered a long-lasting (chronic) disease.
“Multiple myeloma is considered incurable and a long-term problem,” Shah said. “Now, with the latest therapies, we are curing a small subset, but not the majority. We always tell patients he’s probably incurable. Hope this will change in the near future. We are approaching, but we are not there yet. “
Although multiple myeloma is almost always a lifelong disease today, there has been a lot of progress in the treatment of multiple myeloma in recent years. A person diagnosed with multiple myeloma will have many treatment options.
“Sometimes patients know it’s not curable and get depressed,” Patel said. “They don’t realize at this point that it’s very treatable. We cannot cure the majority. But we can extend life from years to decades with tolerable therapy. They will be in therapy for the rest of their lives, but the treatment will not only prolong life. Quality [of life] is equally important. “
Treatment for myeloma usually involves a combination of drugs. Patients newly diagnosed with multiple myeloma often suffer and are fatigued as a result of anemia, bone damage, or other complications of the disease. Treatment doesn’t just fight cancer, but it will often make you feel better too.
“Most people, when they think of chemotherapy, think of hair loss, nausea, staying in bed all the time,” Patel said. In multiple myeloma, it’s not like that. “Treatment is really a way to improve the quality of life.”
When people first arrive, Shah says, “They may have had a late diagnosis. They can come in a wheelchair. Once treatment is started and the cancer responds as it usually does, she says, those same patients often turn back on.
Find a myeloma specialist
When you have a new diagnosis of multiple myeloma, it’s a good idea to see a specialist early on, says Jason Valent, MD, myeloma specialist at the Cleveland Clinic.
“It’s a little easier for someone like me because I only deal with myeloma patients,” Valent said.
With the many treatment options, new drug approvals, and ongoing clinical trials, it helps to have a specialist who is up to date with new developments as they arise. A community doctor may only see a few myeloma patients per year, compared to hundreds at a larger cancer center with myeloma specialists. While a doctor near you can oversee day-to-day care when a larger center is not nearby, a specialist on your team can help guide treatment and consider all options remotely, 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 when making treatment decisions,” Patel said.
‘It’s a marathon’
Although multiple myeloma is unique, it is in some ways similar to other cancers. Whenever there is a new diagnosis of cancer, there is a lot to take, learn and consider. In addition to decisions about cancer and its treatment, you will have personal choices to make, including who and when you want to tell about your diagnosis. There will also be practical considerations, including knowing what your insurance will cover and what it will not cover.
“Any cancer diagnosis is a life changing experience,” said Valent. “The emotions that come with it can be the hardest things to deal with.”
Ask if your healthcare team includes or can recommend counselors, psychologists, social workers, pain specialists, or others who can help you with various aspects of the condition and its care. Faced with a new diagnosis of multiple myeloma, Shah recommends finding other things to focus on besides cancer and its treatment.
“Those who hold onto a job or hobby and don’t let illness define them seem to cope better,” Shah says. “It’s a marathon. Those who fixate and focus on the disease can suffer from a lot of anxiety and stress.”
“You’re going to be in some form of treatment for the rest of your life,” Valent said. Although it is different from many other cancers, “we treat myeloma in some ways like diabetes. You can take a pill or an injection for the rest of your life, but it is reasonable to expect to keep it. disease under control, hopefully for long periods. “
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