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How We Diagnose Waldenström's Macroglobulinemia

  • Waldenstrom's treatment team's Toni Dubeau, NP, receives Dana-Farber's DAISY Award, recognizing the extraordinary nursing care she provides her patients and their families.At the Bing Center for Waldenström's Macroglobulinemia at Dana-Farber/Brigham and Women's Cancer Center (DF/BWCC), our specialists manage your diagnosis and treatment plan as a team. Because we are a highly specialized center, your testing and care are coordinated from your first appointment.

    Because Waldenström's is rare, it is often misdiagnosed. It important to be seen at – or consult with – a treatment center like ours that cares for many patients with this kind of cancer.

    Initial diagnosis

    • Some patients are completely asymptomatic when they are diagnosed. The cancer is often suspected after a blood test shows increased IgM.
    • Waldenström's can be mistaken for multiple myeloma or indolent lymphoma, both of which are also B-cell malignancies. About 5 to 10 percent of patients who come to our center have been misdiagnosed.
    • The most accurate way to diagnose Waldenström's is by a bone marrow biopsy. At our center, our hematopathologists perform these bone biopsies on a daily basis and we have deep experience in this area.

    Your doctor may also conduct imaging studies (CT scans, X-rays, and PET scans) of the chest, abdomen, and pelvis to look for an enlarged spleen or lymph nodes, or abnormal retinal veins.

    Genetic analysis

    More and more, targeted therapies focus on specific molecular changes. Since 2012, we have been investigating genetic mutations of people with Waldenström's and found this information useful in predicting outcomes and in determining which treatments will be most effective.

    You can have a precise "tumor profile" created that gives us information that may reveal genetic or chromosomal abnormalities of the plasma cells. We have found that patients' overall survival from the start of therapy is often based on highly over-expressed or under-expressed genes.

    Staging

    Because Waldenström's involves the bone marrow, it is considered to be a disease of the whole body. This means that there is no staging process. Still, certain diagnostic factors, such as age, levels of IgM, hemoglobin, and platelets can be predictive in terms of outcomes.