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At the Bing Center for Waldenström's Macroglobulinemia at Dana-Farber Brigham Cancer Center), 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 uncommon, it is sometimes misdiagnosed. It's important to be seen at – or consult with – a treatment center like ours that is dedicated to this kind of cancer.

Initial diagnosis

•   Some patients are completely asymptomatic when they are diagnosed. WM is often suspected after a blood test shows increased IgM in symptomatic patients.
•   Waldenström's can be mistaken for multiple myeloma or indolent lymphoma, both of which are also B-cell malignancies.
•   The most accurate way to diagnose Waldenström's is by a bone marrow biopsy and supported by appropriate molecular testing for the MYD88 mutation. At our center, our hematopathologists perform these studies on a daily basis and we have deep experience in this area. The MYD88 mutation in WM was discovered in the Bing Center Laboratories, and molecular testing for the most common MYD88 mutation (L265P) was developed in our laboratory.
•   We also perform genomic testing for CXCR4 and TP53 which impact treatment decisions. The CXCR4 mutation in WM was discovered in the Bing Center and its importance in impacting WM disease presentation and treatment outcomes was first reported in studies from the Bing Center.
•   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

In WM, targeted therapies are now focusing on specific molecular changes in WM cells. Since 2012, we have been actively investigating the importance of MYD88, CXCR4 and TP53 tumor mutations in people with Waldenström's and developed genomic specific guidelines for using genomic based studies to inform treatment decisions, Importantly, we also understand which tests are best able to identify MYD88, CXCR4 and TP53 mutations, and have performed extensive validation studies for MYD88 and CXCR4 mutation testing.

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, as can MYD88, CXCR4 and TP53 mutations in WM cells.