When you’re diagnosed with a cancer such as Waldenstrom’s macroglobulinemia (WM), your head might spin with questions, especially about survival rate. It’s natural to wonder about your prognosis — your outlook or chances of recovering.

Waldenstrom’s macroglobulinemia, also called lymphoplasmacytic lymphoma, is a rare cancer of your white blood cells. WM occurs when these cells, which normally help fight infection, grow out of control. This form of non-Hodgkin lymphoma often can’t be cured, but treatments can help keep symptoms under control. Many people live for years or decades with WM.

Overall Survival Rates

When estimating outcomes, researchers often use a particular statistic called the survival rate — a measurement based on data from large groups of people. This number doesn’t tell you exactly what your prognosis will be, however, because many factors can affect how your condition progresses.

Recent data showed that the five-year survival rate for Waldenstrom’s macroglobulinemia is 78 percent. In other words, nearly 4 out of 5 people live for at least five years after being diagnosed with WM.

The WM survival rate has improved in recent years for many groups of people. As researchers have uncovered more about the condition and developed more effective treatments like rituximab (Rituxan), people are living longer. This means that people diagnosed with WM today may have an even better prognosis than current survival rates suggest.

Factors That May Affect Prognosis

Survival rates express a general average. Your individual outcome is also based on other factors that could affect how well you can tolerate treatment or predict how quickly your cancer cells grow.

To learn more about your prognosis, talk with your health care team. Your doctors can help you understand how the following factors may make it harder or easier for you to live with Waldenstrom’s macroglobulinemia. They can also suggest treatment options that are most likely to work based on your health and the characteristics of your cancer.

Age

The older you are, the more likely you are to have a poor prognosis. It may be harder for older adults to withstand cancer treatments that can cause toxic side effects.

Performance Status

Your performance status is a number related to how well you can complete daily activities and take care of yourself. For example, you may have a good performance score if you are mostly unaffected by your cancer. You might have a lower score if you must stay in bed or need others to help you get around your home.

Some research has found that people with a worse performance status are more likely to experience a poor outcome from their WM.

Levels of Lactate Dehydrogenase

Lactate dehydrogenase (LDH) is an enzyme that helps cells create energy. All cells make some LDH, but cancer cells often produce high amounts. Your WM prognosis may be worse if you have high LDH levels.

Beta-2-Microglobulin Levels

Levels of the beta-2-microglobulin protein also tend to rise when you have cancer, especially a type that affects your blood cells. Higher beta-2-microglobulin levels are linked to a worse prognosis.

Altered Levels of Blood Cells

If you have WM, cancer cells can fill your bone marrow (the spongy tissue inside your bones, where new blood cells are made) and crowd out other blood cells. Because of this, having low levels of healthy blood cells may be a sign of worse disease and a poorer prognosis.

Researchers have found that a poor outlook may be linked to the following:

• Low levels of neutrophils — Noncancerous white blood cells that find and kill germs
• Low levels of hemoglobin — A protein in red blood cells, which help carry oxygen around your body
• Low platelet counts — Cell fragments that help your blood form clots if you’re injured

Not having enough of these types of cells may lead to additional Waldenstrom’s macroglobulinemia symptoms, such as frequent infections, signs of anemia (low red blood cell levels) like tiredness and paleness, or bleeding problems.

Immunoglobulin M Levels

WM cells often raise levels of an abnormal protein called M protein, immunoglobulin M (IgM), or monoclonal IgM. Some research has found that the higher your IgM levels, the greater your chance of experiencing a poor outcome.

The International Prognostic Scoring System for Waldenstrom Macroglobulinemia

When estimating your WM prognosis, your doctor may use the International Prognostic Scoring System for Waldenstrom Macroglobulinemia, abbreviated as both ISSWM and IPSSWM. This system helps your health care team predict your disease course based on many of the above prognostic factors. The ISSWM divides people into categories with different risk levels, which can help you and your team understand your estimated survival and choose an appropriate treatment regimen.

Calculating Risk

When working with the ISSWM, your doctor will assign 1 point for each factor such as these:

• LDH level exceeding 333 international units per liter
• Beta-2-microglobulin level of more than 3 milligrams per liter
• Hemoglobin level below 11.5 grams per deciliter
• Platelet count below 100,000 per microliter (also written as 100 x 10⁹ per liter)
• IgM level above 70 grams per liter

Your doctor will then add up your points. If you have zero or 1 point and are younger than 65, you will be put in a low-risk group, indicating that you are likely to live longer. You have an intermediate risk if you have 2 points and are younger than 65 or if you have zero or 1 point and are 65 or older. If you have 3 or more points, you are in the high-risk group regardless of your age — your WM is more aggressive, and you are less likely to live for a long time.

Determining Survival Rates

For each risk category, researchers have reported the survival rate. They have also determined the median survival, which describes the average length of time people live after receiving a diagnosis. Half the people in each category will live for less time than the median survival, and half will live longer.

Your survival rate and median survival vary based on your risk group:

• Low risk — About 87 percent of people in this category live at least five years after being diagnosed, and the median survival is 12 years.
• Intermediate risk — About 68 percent live at least five years, and the median survival is eight years.
• High risk — About 36 percent live for five years or more, and the median survival is three and a half years.

These numbers don’t tell you exactly what your outcome will be. You may have a different prognosis based on individual factors or your treatment plan.

Can You Control Your Prognosis?

You can’t directly change the risk factors that are most likely to affect your prognosis. However, you can take charge of your health by making sure you attend all your medical appointments and listen to your health care team.

While living with cancer, you may experience a better outcome and quality of life if you follow your doctor’s instructions. Be sure to ask for clarification if you are unsure about anything. Staying in close communication with your health care team throughout your treatment journey may help you achieve the best possible results.

If you are using a watchful waiting approach — you are waiting to start treatment until your condition worsens — it’s especially important to go to follow-up visits. During this watch-and-wait period, your doctor may recommend blood work every three to six months. Additionally, you should tell your doctor about any new symptoms that arise. This way, you can quickly find out when your WM is progressing and begin treatment while your blood cancer is still in the early stages.

Studies have found that people with cancer may live longer when they take care of their mental health. Reach out to loved ones or to a mental health care provider when you are struggling, and take steps to try to reduce your stress levels.

Read more about tips related to self-care and lymphoma treatment and finding peace while living with cancer.

Talk With Others Who Understand

MyLymphomaTeam is the social network for people with lymphoma and their loved ones. On MyLymphomaTeam, more than 14,000 members come together to ask questions, give advice, and share their stories with others who understand life with lymphoma.

Are you living with Waldenstrom’s macroglobulinemia? Have you and your doctor talked about WM survival rate and your prognosis? Share your experiences in the comments below, or start a conversation by posting on your Activities page.