Waldenstrom Macroglobulinemia Diagnosis, Staging, and Outlook

Learn about the signs and symptoms of Waldenstrom macroglobulinemia (WM), the tests that are done to diagnose and stage the disease, and the outlook for people diagnosed with it.

Can Waldenstrom macroglobulinemia be found early?

Waldenstrom macroglobulinemia (WM) is not common. At this time, there are no widely recommended screening tests to look for the disease in people without symptoms.

Still, many cases of WM are found early.

When WM is found early, it usually happens if a person goes to the doctor with symptoms or during blood tests done for another reason. The best way to find this cancer early is to see your health care team if you have signs or symptoms that might be caused by the disease.

What are the signs and symptoms of Waldenstrom macroglobulinemia?

Many people diagnosed with Waldenstrom macroglobulinemia (WM) have no symptoms. In these cases, the diagnosis is made because of blood tests done for another reason. WM without symptoms is sometimes called asymptomatic or smoldering WM.

When WM does cause symptoms, the most common ones are:

• Anemia: If WM cells fill up the bone marrow space, it can be difficult to make normal blood cells. Low levels of red blood cells (anemia) can make you feel weak or tired.
• Hyperviscosity syndrome: Blood travels through the body slowly because of the large antibodies. This can lead to symptoms like headaches, blurry vision, dizziness, difficulty walking, seizures, shortness of breath, or chest pain.
• Cryoglobulinemia: Thickened blood from antibodies in your bloodstream can cause pain or poor blood flow in the smaller blood vessels of your ears, fingers, and toes.
• Neuropathy: Abnormal antibodies can attack and damage nerves outside your brain. This can lead to numbness in your feet and legs called neuropathy. Neuropathy in WM is usually painless.

WM can also cause symptoms like fevers, drenching night sweats, and weight loss.

In rare cases, it can cause amyloidosis. This is a condition in which proteins called amyloid, made by the WM cells, build up in organs like the heart and kidneys and cause them to stop working well.

Any of these symptoms could have other causes, but it’s important to check with your health care team so they can find and treat the cause.

How is Waldenstrom macroglobulinemia diagnosed?

Diagnosing Waldenstrom macroglobulinemia (WM) usually involves blood tests and imaging tests, like an ultrasound or CT scan, to look for abnormal lymph nodes. Biopsies of the bone marrow and sometimes an abnormal node or tumor are then needed to make a diagnosis.

If your health care team suspects you have WM, they will do more detailed tests on your blood, bone marrow, and/or biopsy sample to learn more about your cancer and how best to treat it.

Some of these tests may also be used to track how well treatment is working.

Staging and outlook for Waldenstrom macroglobulinemia

Most types of cancer are assigned a stage. The stage describes how much cancer is in the body. It helps doctors figure out how serious the cancer is and how best to treat it. Doctors often use stage when talking about a person’s outlook (prognosis).

Waldenstrom macroglobulinemia (WM) is not assigned a stage in this way, because the extent of disease in the body hasn’t been shown to be important when looking at outcomes or deciding on treatment for WM. Instead, one of the most important questions doctors answer first is whether treatment is needed right away or if it can wait.

• If you have WM but no symptoms (asymptomatic): Doctors will assign you a risk category. This helps them estimate how quickly your cancer might progress and how soon you’ll need treatment.
• If you have WM with symptoms (symptomatic): Doctors will assign you a risk score. This helps them plan your treatment and estimate your prognosis (outlook).

Estimating progression for asymptomatic WM

WM is often slow-growing, so some people may not need treatment for months or years. For people with WM and no symptoms, doctors use certain factors to predict when treatment may be needed.

These factors include:

• IgM ≥ 4500 mg/dL
• Bone marrow disease ≥ 70%
• β2M ≥ 4 mg/dL
• Albumin ≤ 3.5 g/dL

These factors together can be used by doctors to predict if a person is at low, intermediate, or high risk for progressing to symptomatic disease.

• People in the high-risk category may need treatment in 1 to 2 years. 
• People in the low-risk category may not need treatment for 10 or more years.

Estimating prognosis for symptomatic WM

When a person with WM has symptoms, doctors use other factors to estimate prognosis, such as the person’s age and the amounts of certain proteins in their blood. With this information, doctors assign a risk score using one of two risk stratification systems.

These risk groups are used to estimate the prognosis (outlook) of symptomatic WM that needs treatment. Risk groups for WM can be confusing. If you are unsure about what they mean for you, ask your cancer care team to explain them in a way you understand.