Leukemia Diagnosis, Staging, and Questions

Technician holding blood sample
Tetra Images/Brand X Pictures/Getty Images

The signs and symptoms of leukemia and other blood cancers can be vague and may be the same as many other less serious conditions. It is very important for the doctor to have an accurate diagnosis to:

  • Predict how the disease will progress
  • Determine the most effective treatment

Usually, when a person shows signs or symptoms of leukemia, they are referred to a specialist in hematology/oncology. This will be the physician that will determine the diagnosis, as well as plan any treatments that may be required.

Some types of leukemia are very slow to grow and can be monitored, while others require prompt treatment. Some of the basic questions you may want to ask your doctor about will help you understand what comes next, for instance: Is my kind of leukemia likely to progress soon? How responsive is my kind of leukemia likely to be to available therapies? Am I a candidate for clinical trials, and would you recommend any for me? Why or why not?

Diagnosing Leukemia

Physical exam and medical history: The history and physical are the starting point in the diagnosis of leukemia. When healthcare providers are seeing a patient who is eventually diagnosed with leukemia, they will almost always begin with a thorough physical exam and medical history. They will be interested to know details about any symptoms you are experiencing and will do a complete head-to-toe assessment. Different types of leukemia may be associated with different findings on the physical exam.

Sometimes there may be signs of abnormal bleeding or bruising. Other times there may be enlargement of certain organs such as the liver or spleen. Still other times there may be no outward signs of leukemia that the physician can discern on the physical exam. In any case, many diseases can look like leukemia, and so the diagnosis of leukemia ultimately requires additional tests.

Blood work: Blood will usually be taken from a vein in your arm and sent to the laboratory in test tubes. The samples are then tested and the cells are examined under a microscope. Common blood tests for leukemia include:

  • Complete Blood Count (CBC): Tests to measure levels of red cells, white cells, and platelets in the body as well as how the cells look.
  • Peripheral Blood Smear: Blood cells are dyed and looked at under a microscope for the presence of immature “blast” cells.

Summary Of Basic Leukemia Blood Work Results: The same leukemia may result in differing findings in the microscopic blood tests at different points in the course of the disease, but here are some general findings typical of the CBC for each of the four main types of leukemia.

Disease

CBC Results

Blood Smear Results

Acute Myelogenous Leukemia (AML)

•Lower than normal amounts of red cells and platelets

•Too many immature white cells

Acute Lymphocytic Leukemia (ALL)

•Lower than normal amounts of red cells and platelets

•Too many immature white cells

Chronic Myelogenous Leukemia (CML)

•Red blood cell count is decreased and the white cell count is often very high
•Platelet levels may be increased or decreased depending on the stage of the disease

•May still show some immature white cells
•Mainly high numbers of fully mature, but dysfunctional cells

Chronic Lymphocytic Leukemia (CLL)

•Red cells and platelets may or may not be decreased
•Increased numbers of lymphocytes

•Little or no immature white cells
•Possibly fragments of red cells

 

Bone Marrow Test

Often, the information provided by the blood that is in your circulation is not enough to go on in terms of the diagnosis and possible treatments. The blood cells in your circulation were all once produced in your body’s “blood cell factor,” aka the bone marrow. Your doctor may recommend a procedure to obtain a sample of bone marrow from your hipbone. This is known as a bone marrow biopsy, and the bone marrow is removed using a long, thin needle. In the bone marrow, there can be both healthy blood-forming cells and leukemia cells, often in differing ratios that may be significant.

Specialized tests of your leukemia cells may reveal certain characteristics that are used to determine your treatment options.

Leukemia Staging

Staging refers to the system by which doctors and laboratory specialists try to categorize your leukemia. Usually in cancer staging, there is some measurement of how far the disease has spread, however leukemia tends to be approached a bit differently. Different kinds of leukemia are categorized, or staged, differently, as well.

You may have heard a numbered system used for the staging of other cancer types – for example, “he has stage IV colon cancer,” or “she has stage III breast cancer,” etc. This numbered staging system is used to describe many types of cancer and the pattern of spread throughout the body, but it can be less useful for cases of leukemia that do not form solid tumors.

For chronic lymphocytic leukemia, or CLL, many doctors use the Rai system. This system may be somewhat of an exception, in that it seems closer to what occurs in the staging of other cancer types. Stages depend in part on spread to other organs, the liver and spleen. The Rai stages are numbered 0 to IV, and can be separated into low, intermediate and high-risk categories.

For acute lymphocytic leukemia, or ALL, however, staging is not done in this way, and  the disease usually does not form tumor masses that extend incrementally. ALL will likely spread to other organs even before it is detected, so rather than using traditional staging methods, physicians often factor in the subtype of ALL and the patient's age. This usually involves cytology tests, flow cytometry and other lab tests to identify the subtype of ALL.

Similarly, acute myelogenous leukemia or AML the disease is usually not detected until it has spread to other organs, and so traditional cancer staging is not needed. The subtype of AML is classified using a cytological (cellular) system. There are different staging systems used. In French-American-British (FAB) classification, AML is classified in eight subtypes, M0 through M7. The World Health Organization (WHO) developed a different system for AML staging trying to more clearly communicate the prognosis (outlook).

For chronic myeloid leukemia (CML), your doctor will examine blood and bone marrow tests to determine the number of diseased cells. There are three stages of CML: chronic, accelerated and blastic. Chronic is the earliest phase of CML. Most CML patients are diagnosed during chronic CML when there may be mild symptoms, especially feeling tired or worn down. If the CML does is limited in its response to treatment during the chronic phase, it can become more aggressive, which can lead to the accelerated phase. As a person’s leukemia progresses to the accelerated phase, symptoms may become more prominent. The most aggressive phase is referred to as blastic CML, or blast crisis. This stage is characterized by the presence of many immature blood-forming cells – 20 percent or more comprised of myeloblasts or lymphoblasts – in their bone marrow or blood, and symptoms are similar to those of acute myeloid leukemia.

A Word From Verywell

If you are already familiar with the staging system of another non-leukemia cancer such as breast cancer or prostate cancer, the stages of leukemia may not translate very well at first. Leukemia stages vary based on the particular type of leukemia. The white blood cell count at the time of diagnosis is sometimes used to help stage the leukemia. Other tools, such as in the staging of CML and AML, include analyzing the number of myeloblasts, or immature white blood cells, found in the blood or bone marrow.

One of the key distinctions to pay attention to at first is whether your leukemia is a chronic leukemia or an acute leukemia. Chronic forms of leukemia may eventually progress and become more aggressive, however the term chronic usually implies slower growth and progression than the term acute.

In addition to the basic category of leukemia, particular microscopic tags or “markers” on the outside of your leukemia cells can be detected by lab tests and are often important in the prognosis and plan going forward after diagnosis. Two patients with the very same kind of leukemia may have different experiences with the disease, different responses to therapy, and different prognoses.

Finally, leukemia is the most common malignancy in childhood, and many times childhood leukemia is actually viewed as a separate entity adult leukemia. If you are looking for information because of a child with leukemia, be aware that sometimes treatments and prognoses differ between the two groups, even though the leukemia may have the same name.

Sources:

American Cancer Society. How is leukemia diagnosed. 2017.

Leukemia & Lymphoma Society. Blood tests. 2017.

 

Bone Marrow Tests (Aspiration and Biopsy): These are tests that give doctors the opportunity to look at the cells in the marrow. The tests are usually done together at the same time, and may be done in the doctor’s office or clinic.

During this procedure, the patient will get a medication to numb the area where the sample will be taken, usually the hipbone, but possibly the breastbone. Then, using a special needle, a very small piece of bone with marrow (the biopsy) is removed, as well as a sample of just the marrow (the aspiration).

These samples are then looked at under the microscope to determine if an abnormality is present.

Spinal Fluid Testing (Lumbar Puncture): The doctor may also choose to test the fluid that surrounds the spinal cord to determine if there are any leukemia cells present. This test, called a lumbar puncture (or “spinal tap”) can be done in the doctor’s office or clinic.

During this procedure, the doctor will have the patient lie on his or her side, or position them leaning forward onto a table so they are “hunched” over. The doctor will then cleanse an area over the spine, and use a small needle to deliver a medication to numb the site. Then, a longer needle is inserted into the back, between the vertebrae, and into the space surrounding the spinal cord. Some fluid will be withdrawn and sent to the lab for further analysis.

Usually, the doctor will have the patient rest in the same position for a short time following the procedure.

Staging Leukemia

Once patients are diagnosed with cancer, they are usually assigned a “stage” which is based on the size of the tumor and whether it has spread from its original site in the body. In the case of leukemia, however, cancer begins in the bone marrow and spreads throughout the body before it is detected.

This makes traditional staging unnecessary.

Physicians will classify leukemia into subtypes based on the characteristics of the leukemia cell’s appearance, specific cell type, and genetic makeup. This classification will help to determine the likely treatment response and prognosis.

Questions To Ask Your Doctor

Tests and procedures can be frightening if you are unsure of what to expect. You may want to write down some questions to ask to help you prepare. Some examples of questions you may want to ask your healthcare provider are:

  • Where will this test be done?
  • What is the procedure for this test?
  • Do I need to bring someone with me?
  • Will I need to fast?
  • Will I be able to return to work after the test?
  • How long will it take to get the results back?
  • How will I get the results?
  • Should I expect any side effects from this test?
  • Will this test be covered by my health plan?

Feel free to take notes while your healthcare provider answers your questions. Have them answer your questions in a different way if you do not understand. Your team will want you to be well informed before any procedures.

Taking Care Of Yourself

If you or your child is being tested for leukemia, this is probably a very scary and stressful time in your life.

You may be unsure of the future, worried about what impact a leukemia diagnosis will have on your family. In addition, you may feel physically unwell.

While it is impossible to forget all the stress you are under, it is important to allow yourself some quiet, reflective time each day and time to do the things that bring you joy. Possibly a walk in the sunshine, a chat with an old friend over coffee. Anything that will help you to relax and reconnect with the "old" you. Maybe you will be surprised to see how much better your body feels when your mind is relaxed!

Sources

Caldwell, B.(2007). Acute leukemias. In Ciesla,B. (Ed.)Hematology in Practice (pp. 159-185). Philadelphia, Pennsylvania: F.A. Davis Company.

Finnegan,K.(2007). Chronic myeloproliferative disorders. In Ciesla, B. (Ed.) Hematology in Practice (pp.187-203). Philadelphia, Pennsylvania: F.A. Davis Company.

Continue Reading