How We Diagnose Waldenström's Macroglobulinemia

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. In our highly specialized center, your testing and care are coordinated from your first appointment.

Because Waldenström's macroglobulinemia (WM) is rare, it is sometimes misdiagnosed or mistreated. It can sometimes be mistaken for multiple myeloma or indolent lymphoma − other B-cell malignancies. It's important to be seen at – or consult with – a treatment center like ours that is experienced with this kind of cancer.

Initial Diagnosis

  • Some patients do not have symptoms when they are diagnosed. WM is often suspected after a blood test shows increased levels of IgM.
  • The most accurate way to diagnose Waldenström's is using a bone marrow biopsy supported by appropriate molecular testing for the MYD88 mutation. Our hematopathologists perform these tests every day and have deep experience in this area. The Bing Center lab discovered the role of the MYD88 mutation in WM and developed the molecular test for the most common MYD88 mutation (L265P).
  • We also perform genetic testing for CXCR4 and TP53 mutations, since these mutations impact treatment decisions. The Bing Center discovered the CXCR4 mutation in WM, as well as its importance in impacting WM disease presentation and treatment outcomes.
  • Your doctor may also do 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 now focus on specific molecular changes in WM cells. Since 2012, we have been studying the importance of MYD88, CXCR4, and TP53 tumor mutations in WM. We have developed guidelines for using genomic-based studies to inform treatment decisions.


Because Waldenström's involves the bone marrow, it is considered to be a whole body disease. This means that there is no staging process. Still, certain diagnostic factors, such as age, levels of IgM, hemoglobin, presence of MYD88, CXCR4, and TP53 mutations in WM cells, and platelets can help inform expected outcomes.

Second Opinions

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Consultations and Second Opinions

  • We believe there is value in patients with suspected or diagnosed Waldenström's receiving a second opinion.
  • We routinely evaluate specimens sent to us from outside centers. These specimens are evaluated by our entire team, including our expert hematopathologists.

Waldenström's can be difficult to diagnose and properly treat. Reasons to consider a second opinion include:

  • To confirm your diagnosis.
  • If you have received a diagnosis and want to be treated at Dana-Farber Brigham Cancer Center.
  • To determine the optimal therapy, and whether any is needed at this time.
  • To learn more about your cancer from specialists who are world leaders in this disease, and who have treated hundreds of other patients like you.
  • To learn if you're eligible for a clinical trial.

Phone: 877-442-3324
Online: Complete the Appointment Request Form

If you cannot travel to Boston in person, you can take advantage of our Online Second Opinion service.

For Referring Physicians

Because you, the referring physician, are an integral part of your patient's care team, we are committed to collaborating with you to provide the best care for your patient.

If you are a physician and have a patient with diagnosed or suspected Waldenström's, we look forward to working with you. Learn how to refer a patient.