What to know when you have a new diagnosis


If you or a loved one just learned that they have Multiple myeloma, The diagnosis may be surprising.You may not know this type of cancer, So when you receive the news and start making decisions about treatment, you may ask your doctor many questions.

“Most patients have never heard of Multiple myeloma“, said Krina Patel, a myeloma expert at MD Anderson Cancer Center. “They’ve all heard of Melanoma [skin cancer].The first thing we tell them is that multiple myeloma is Blood cancer. “

Compared with other cancers, this lack of understanding often makes the diagnosis of multiple myeloma emotionally more difficult. “This is a rare cancer and most patients have never heard of it before diagnosis,” said Dr. Urvi Shah, a myeloma specialist at Memorial Sloan Kettering Cancer Center. “More anxiety with pressure Because you don’t know what will happen. “

This is another cancer

“Patients come in and ask,’What is my stage?’ They want to know if it is early or late and what is going on,” Shah said. “But for myeloma and many blood cancers, the situation is different. This is not like a solid tumor, which confuses patients.”

Since myeloma is a blood cancer, doctors will not stage solid cancers like breast cancer or breast cancer. Prostate cancer.Cancer in the blood blood Therefore, it is everywhere in the human body. But this does not necessarily mean that your cancer is getting worse or harder to treat. For multiple myeloma, Patel said: “There is no true metastatic version.”

Doctors do use a staging system based on blood test results and other things to tell them whether cancer is at high risk. These test results can help you and your doctor understand the expected results and how to best treat myeloma. Regardless of the stage, multiple myeloma is considered a persistent (chronic) disease.

Shah said: “Multiple myeloma is considered to be a long-term problem that cannot be cured.” “Now with the latest treatments, we are healing a small part, but we cannot cure most of it. We still tell patients that it is likely to be incurable. Yes. I hope this will change in the near future. We are approaching, but we are not there yet.”

Treatment progress

Although multiple myeloma is almost always a lifelong disease today, many advances have been made in the treatment of multiple myeloma in recent years. People diagnosed with multiple myeloma will have many good treatment options.

“Sometimes patients know that this is incurable and get frustrated because of it,” Patel said. “They don’t realize it is treatable yet. We can’t cure most people. But we can prolong life from years to decades with tolerable treatments. They will be treated for the rest of their lives, but treatments can be more than just Extend life. Quality [of life] of equal importance. “

Myeloma treatment usually involves a combination of the following drug.Patients newly diagnosed with multiple myeloma usually pain with tired as a result of anemia, bone Lesions or other complications. Treatment not only fights cancer, but it also usually makes you feel better.

“Most people, when they think Chemistry, considering Hair loss, nausea, Has been lying on the bed. Patel said. In multiple myeloma, this is not the case. “Treatment is actually a way to improve the quality of life. “

Shah said: “When people come in for the first time, their diagnosis may be delayed. They may be in a wheelchair.” She said that once treatment is started and the cancer responds as usual, those same patients will usually go again. Get up and walk.

Find a myeloma specialist

Dr. Jason Valent, a myeloma specialist at the Cleveland Clinic, said that when you have a new diagnosis of multiple myeloma, it is best to go to an expert as soon as possible.

Valente said: “For people like me, this is easier because I only take care of myeloma patients.”

Considering many treatment options, new drug approvals and ongoing Clinical Trials, Which will help to have an expert who is always up-to-date. Community doctors may only see a small number of myeloma patients each year, and hundreds of people in larger cases. Cancer center With a myeloma specialist. When there is no larger medical center nearby, a doctor close to home can supervise daily care, while an expert in your team can help guide treatment and consider all options far away, including new treatments.

Patel said: “Even if you don’t see an expert every month, it is a good idea to arrange for them in the background, especially when making treatment decisions.”

“This is a marathon”

Although multiple myeloma is unique, it is similar to other cancers in some respects.There are new things at all times Cancer diagnosis, There is a lot of content to learn, study and consider. In addition to making decisions about cancer and its treatment, you will also make personal choices, including who you want to tell your diagnosis and when to make the decision.There will also be some practical considerations, including learning from your Insurance Will cover, not cover.

Valente said: “Any cancer diagnosis is a life-changing experience.” “The emotions that follow may be some of the 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 all aspects of the disease and its care. When you are faced with a new diagnosis of multiple myeloma, Shah recommends that you look for other things that focus on cancer and its treatment.

Shah said: “Those who are engaged in work or hobbies and do not let the disease define the disease seem to be better treated. This is a marathon. People who stick to and focus on the disease may suffer a lot of anxiety and fear. pressure. “

Valente said: “You will receive some form of treatment for the rest of your life. Although this is different from many other cancers, we treat myeloma in a similar way. diabetes. You may take medicine or injections throughout your life, but you reasonably expect to keep the disease under control and hope to take it for a long time. “


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