Multiple myeloma is a blood cancer that starts in the plasma cells of bone marrow. Myeloma is different from bone cancer because it begins in the white blood cells, not in the bone. Though the words sound similar, myeloma is also not melanoma, which is a cancer of the skin.
Myeloma develops when plasma cells divide abnormally without control. The overproduction of abnormal plasma cells can cause bone damage and pain. Myeloma can also cause other problems, like anemia and kidney damage.
Multiple myeloma is commonly divided into two distinct groups:
♦ Asymptomatic or smoldering myeloma is when multiple myeloma is diagnosed early, with no symptoms, but with slow growing malignant plasma cells. If multiple myeloma is asymptomatic, a “watch and wait” approach is routinely taken.
♦ Symptomatic myeloma is when multiple myeloma is diagnosed and the individual is experiencing symptoms such as unusual weight loss, bone pain in the back or ribs, fractures in the spine, numb or weak feelings in the legs or arms, kidney damage, frequent infections, and anemia which leads to fatigue. Usually when symptoms are present, treatment is started immediately.
There is no known cause for multiple myeloma, but with improved diagnosis and treatment methods, death from multiple myeloma has decreased dramatically since the 1980s. At this time, there is also no known cure for multiple myeloma, so the success of treatment varies widely for individuals. It is mostly dependent upon the biology of the disease, as well as a person’s health before treatment and how well they can tolerate a treatment.
A second opinion is often recommended before starting treatment, and in some cases, insurance companies require this step prior to starting treatment.
Researchers are studying the details of multiple myeloma cells and other possible risk factors to learn more about what causes it and why. This will hopefully lead to better diagnostic and treatment methods in the future.
Getting a Proper Diagnosis
Most often, a person goes to the doctor for symptoms such as fatigue, weight loss, urinary problems, extreme thirst, infections, pain, or a broken bone. They have no idea that the problem is really blood cancer. Then a routine blood test or bone X-ray may alert a doctor to test further for multiple myeloma. When multiple myeloma has no symptoms, it is sometimes identified during a yearly physical.
Multiple myeloma can run in families.
If you have a close family member who has multiple myeloma, it is helpful to share your family cancer history with your doctor.
If multiple myeloma is diagnosed, the next step is to determine how far it has spread. This information may help direct treatment decisions. Multiple myeloma is not staged in the same way as other cancers. Your doctor may use one of two staging systems: the Durie Salmon Staging System or the International Staging System. These systems will help your doctor better understand your disease. Talk openly with your doctor and nurse to learn more about your disease because each person’s multiple myeloma diagnosis is different.
Finding the Right Doctor
It is helpful to find an experienced hematologist-oncologist – a doctor who specializes in cancers of the blood and related tissues, including bone marrow – to treat multiple myeloma. Ideally, you can work with someone who you can talk to and trust and who will accept your type of health insurance. You will work with this individual for a long period of time as they coordinate your care. There are several ways to find an expert in your area.
♦ Ask your primary care doctor for a referral. Most primary care doctors know one or more hematologist-oncologists with expertise in treating multiple myeloma.
♦ Ask your health insurance company for a list of hematologist-oncologists in your area, and ask your primary care doctor if he or she can recommend one from the list.
♦ Search for hematologist-oncologists through the websites of professional organizations such as the American Society of Hematology (hematology.org/patients), the American Society of Clinical Oncology (cancer.net), the Multiple Myeloma Research Consortium (themmrf.org), or the National Cancer Institute (cancer.gov).
Getting a Second Opinion
Some people find it difficult to speak to their doctor about getting a second opinion. A second opinion is often recommended before starting treatment, and in some cases, insurance companies require this step prior to starting treatment. A doctor should be comfortable with this request and should assist you in seeking a second opinion.
It is always a good idea to interview a few doctors and collect a few opinions about how to treat your disease. Getting more than one opinion can provide you with additional information and options, access to a different medical facility and team, or access to a clinical trial. It may also give you confidence that you are already on the right track.
Excerpted with permission from Frankly Speaking About Cancer: Multiple Myeloma © Cancer Support Community. For more information about the Cancer Support Community, visit CancerSupportCommunity.org or call (888)793-9355.
This article was published in Coping® with Cancer magazine, March/April 2017.