While each person diagnosed with WM may have his or her own unique physical manifestations because of the disease, there are certain signs and symptoms that are common to many WM patients and medical tests that are widely used to monitor disease status. Over time, many different types of medical tests and procedures are performed in order to keep track of one's health situation; as a result it becomes incumbent upon the patient and caregiver to maintain careful records of such activity.
Many people diagnosed with cancer feel a sense of urgency about jumping right in and starting treatment immediately. However, because WM is an indolent (slow growing) disease, treatment may not be necessary right away, and there is usually time to do research to make sure that your diagnosis is correct and that your treatment plan makes sense. This research should involve educating yourself about the disease and interacting with your healthcare team, which may also involve getting a second opinion from a WM expert. This is especially important since WM is so rare that many physicians may never have seen or treated a patient with the disease.
A valuable educational resource for physicians who treat WM and their patients consists of consensus recommendations developed from the proceedings of the biennial global conferences known as the International Workshops on Waldenstrom's Macroglobulinemia (IWWM). These Workshops provide medical professionals the opportunity to share their research findings and collaborate on several guidelines important in the clinical management of WM. The most recent IWWM set of recommendations for the diagnosis and initial evaluation of WM patients was published in the British Journal of Haematology in 2016.
The National Comprehensive Cancer Network (NCCN), which publishes and regularly updates Clinical Practice Guidelines that are directed to physicians, has also written a valuable booklet for patients that discusses WM/LPL, how it is diagnosed, how it is monitored, current treatments, and other valuable information. The NCCN Guidelines for Patients with Waldenström's Macroglobulinemia/Lymphoplasmacytic Lymphoma, which has been endorsed by the IWMF, is currently available only in English.