Prevention

Hematologic malignancy genetics

Researchers continue to make rapid advances and discoveries related to genetics and blood cancer. Today, we are directly applying these insights to blood cancer prevention and treatment at the Hematologic Malignancy Genetics Clinic at Fred Hutchinson Cancer Center.

At the Hematologic Malignancy Genetics Clinic at Fred Hutch — one of only a few clinics of its kind in the nation — our hematologist-oncologist, medical geneticist and genetic counselor are here to help patients understand their genetic risk and get them the follow-up treatment or surveillance (monitoring) they need.

Genetic counselor A health care professional with special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. A health professional who has special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. They help patients find out their chances of having a genetic condition or of having a child or other family member with a genetic condition. They also help patients understand their options for genetic testing, including its risks and benefits. After genetic testing is done, genetic counselors help patients understand their test results, including how the results can affect other family members. They also provide counseling and support. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Surveillance Closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. In medicine, surveillance means closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. It may also be used for a person who has an increased risk of a disease, such as cancer. During surveillance, certain exams and tests are done on a regular schedule. In public health, surveillance may also refer to the ongoing collection of information about a disease, such as cancer, in a certain group of people. The information collected may include where the disease occurs in a population and whether it affects people of a certain gender, age or ethnic group.

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Hematologic Malignancy Genetics Clinic

At the Hematologic Malignancy Genetics Clinic at Fred Hutch, we help patients understand their risk of cancer using advanced DNA testing and genetic counseling. We also give recommendations for follow-up care to adult patients and family members who may be at higher risk of developing blood cancers (hematologic malignancies) or other non-cancerous disorders because of their family history.

Patients with existing blood cancer also benefit from testing, since knowing the results can lead to more effective, more precise treatments, which can mean better outcomes.

Learn more about the different ways our clinic can help you.

If you are a current Fred Hutch patient

Talk with your Fred Hutch physician to find out if genetic testing might be right for you. If so, your physician can refer you to the Hematologic Malignancy Genetics Clinic at Fred Hutch.

Genetic testing Tests that can be done to see if a person has certain gene changes known to increase cancer risk.

If you are not a current Fred Hutch patient

Your physician can refer you to the Hematologic Malignancy Genetics Clinic at Fred Hutch for evaluation by calling (855) 557-0555. If you have a family history that you believe could put you at higher risk for a blood cancer, or if you already have a blood cancer and are interested in genetic testing, you can contact us directly to schedule a consultation.

Genetic testing Tests that can be done to see if a person has certain gene changes known to increase cancer risk.

“Being tested and finding out you may be at greater risk for developing a blood cancer matters. Many of our patients and their family members have received better, more precise care because their specific risk has been identified.”

— Sioban B. Keel, MD, Hematologist

Frequently Asked Questions (FAQs)

How do you work with people who do not have an existing blood cancer?

If you do not have an existing blood cancer, but are concerned about being at higher risk, talk to your physician. Your physician can help you understand if you need a referral to our clinic, where we will assess your risk based on a clinical and laboratory evaluation.

If we find that your risk of a blood cancer is high, we will support you in getting the continued surveillance and care you need. This might include referring you to the High-Risk Surveillance Clinic at Fred Hutch or the Hematology Clinic at Fred Hutch, where you will be carefully screened and closely monitored, so if you do develop a blood or related type of cancer, it can be caught in an early stage, when it can be more easily treated. Or there may be a prevention-focused clinical trial you are eligible for. Many of these inherited disorders are also linked to noncancerous medical issues, which may also require treatment or surveillance.

Clinical trial A type of research study that tests how well new medical approaches work in people. These studies test new methods of screening, prevention, diagnosis or treatment of a disease. Stage The extent of a cancer in the body. Staging is usually based on the size of the tumor, whether lymph nodes contain cancer and whether the cancer has spread from the original site to other parts of the body. Surveillance Closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. In medicine, surveillance means closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. It may also be used for a person who has an increased risk of a disease, such as cancer. During surveillance, certain exams and tests are done on a regular schedule. In public health, surveillance may also refer to the ongoing collection of information about a disease, such as cancer, in a certain group of people. The information collected may include where the disease occurs in a population and whether it affects people of a certain gender, age or ethnic group.

How do you help people who have already been diagnosed with blood cancer?

If you have already been diagnosed with a blood cancer, knowing whether it is caused by a gene mutation can help your physician offer more precise treatments. If you need other types of specialty cancer care, assessment or follow-up based on your genetic testing results, we will get you the support you need within our network of medical experts at Fred Hutch.

Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Genetic testing Tests that can be done to see if a person has certain gene changes known to increase cancer risk. Mutation Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; mutations that occur in other types of cells are not inherited. Certain mutations may lead to cancer or other diseases. A mutation is sometimes called a variant.

How can knowing your results can help your family?

If testing shows you have a gene mutation that is linked to a higher risk of blood cancer risk or other medical issues, your blood relatives might be at higher risk, too. The Hematologic Malignancy Genetics Clinic at Fred Hutch can help refer your family members for genetic counseling and testing, if appropriate. We can also guide them to resources for screening and early cancer prevention. We partner with our alliance partners at Seattle Children’s Hospital to make sure children who are at risk receive the right care.

Gene The functional and physical unit of heredity passed from parent to offspring. Genes are pieces of DNA, and most genes contain the information for making a specific protein. Mutation Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; mutations that occur in other types of cells are not inherited. Certain mutations may lead to cancer or other diseases. A mutation is sometimes called a variant. Screening Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease. Examples of cancer screening tests are the mammogram (for breast cancer), colonoscopy (for colon cancer) and Pap and HPV tests (for cervical cancer). Screening can also include a genetic test to check for a person’s risk of developing an inherited disease.

Should you be tested?

You should consider testing if you:

Have a personal history of a blood cancer; for example, close relative(s) who also have blood cancers
Were diagnosed with aplastic anemia, myelodysplastic syndrome (MDS) or acute myeloid leukemia (AML) before the age of 45
Have long-standing blood count abnormalities and a family history of blood count abnormalities or early-onset cancers
Have a known familial bone marrow failure syndrome or an inherited risk of hematologic malignancy, such as:
- Familial platelet disorder with propensity to myeloid malignancies (for example, RUNX1 mutation)
- Familial MDS/AML (for example, GATA2 deficiency)
- Other known familial MDS/acute leukemia predisposition syndrome
- Telomere biology disorder or other inherited bone marrow failure condition (for example, Diamond-Blackfan anemia, Shwachman-Diamond Syndrome)

Anemia A condition in which the number of red blood cells is below normal. Bone marrow The soft, spongy material in the center of your bones that produces all your blood cells, such as white blood cells, red blood cells and platelets. Mutation Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; mutations that occur in other types of cells are not inherited. Certain mutations may lead to cancer or other diseases. A mutation is sometimes called a variant. Platelet A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets help form blood clots to slow or stop bleeding and to help wounds heal. A tiny, disc-shaped piece of a cell that is found in the blood and spleen. Platelets are pieces of very large cells in the bone marrow called megakaryocytes. They help form blood clots to slow or stop bleeding and to help wounds heal. Having too many or too few platelets, or having platelets that do not work as they should, can cause problems. Checking the number of platelets in the blood may help diagnose certain diseases or conditions.

What happens at your visit

Before you visit us, we will review all of your relevant medical records, including your family medical history. At your first genetic consultation, you will meet with a genetic counselor, medical geneticist and hematologist-oncologist. This takes about one to two hours.

During your time with the genetic counselor, your counselor will go over your personal and family medical history with you. If there is a possible genetic risk, the counselor will talk with you about the option of genetic testing and the impact of your results.

Our medical geneticist works in partnership with the genetic counselor, helping to develop a plan for surveillance and screening, and continues to offer counseling on potential risks and impacts for your family.

During your time with our hematologist-oncologist, this physician will guide you on the impact of your existing hematologic disease, or your risk of developing a blood cancer, and what that means for treatment and surveillance.

If you decide to have genetic testing, depending on your unique situation and whether or not you have an existing blood cancer, you may have a blood draw, provide a saliva sample or have a skin biopsy. Genetic testing results usually take about a month.

After your results come back from the lab, you will meet with our genetic counselor to discuss your results and any treatment or follow-up care you may need. If your results show you have a genetic mutation (change), but you do not have an existing blood cancer, we’ll also discuss your personalized prevention plan and next steps, which may include follow-up care at the High Risk Surveillance Clinic or the Hematology Clinic at Fred Hutch.

Skin biopsy

Sometimes we need to use a non-blood source of DNA for genetic testing, which means we will take a skin biopsy. This involves removing a small amount of your skin so it can be analyzed in a lab. Your skin will be numbed first, and a small stitch is often used to close the opening. If you need a skin biopsy, one of our team members will call you to schedule this procedure.

Biopsy The removal of a sample of tissue or fluid that is examined to see whether cancer is present. This may be done with a large needle or through surgical removal of tissue or fluids. Genetic counselor A health care professional with special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. A health professional who has special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. They help patients find out their chances of having a genetic condition or of having a child or other family member with a genetic condition. They also help patients understand their options for genetic testing, including its risks and benefits. After genetic testing is done, genetic counselors help patients understand their test results, including how the results can affect other family members. They also provide counseling and support. Genetic testing Tests that can be done to see if a person has certain gene changes known to increase cancer risk. Hematologist A physician who specializes in diseases of the blood and blood-forming tissues. Mutation Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; mutations that occur in other types of cells are not inherited. Certain mutations may lead to cancer or other diseases. A mutation is sometimes called a variant. Screening Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease. Examples of cancer screening tests are the mammogram (for breast cancer), colonoscopy (for colon cancer) and Pap and HPV tests (for cervical cancer). Screening can also include a genetic test to check for a person’s risk of developing an inherited disease. Surveillance Closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. In medicine, surveillance means closely watching a patient’s condition but not treating it unless there are changes in test results. Surveillance is also used to find early signs that a disease has come back. It may also be used for a person who has an increased risk of a disease, such as cancer. During surveillance, certain exams and tests are done on a regular schedule. In public health, surveillance may also refer to the ongoing collection of information about a disease, such as cancer, in a certain group of people. The information collected may include where the disease occurs in a population and whether it affects people of a certain gender, age or ethnic group.

“Before coming to us, some patients have seen dozens of providers without receiving a definitive diagnosis. In one case, a patient had hundreds of doctors’ visits. Our genetic evaluation showed the problems were all due to the same underlying inherited genetic issue.”

— Marshall S. Horwitz, MD, PhD, Medical Geneticist

Care team

The Hematologic Malignancy Genetics Clinic at Fred Hutch team is made up of experts from a variety of specialties within Fred Hutch.

Hematologist-oncologist

This physician specializes in blood cancers and oversees a blood cancer patient’s medicine-based treatments. At the Hematologic Malignancy Genetics Clinic at Fred Hutch, this provider recommends medicine-based treatments to match your specific genetic mutation.

Mutation Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Any change in the DNA sequence of a cell. Mutations may be caused by mistakes during cell division, or they may be caused by exposure to DNA-damaging agents in the environment. Mutations can be harmful, beneficial or have no effect. If they occur in cells that make eggs or sperm, they can be inherited; mutations that occur in other types of cells are not inherited. Certain mutations may lead to cancer or other diseases. A mutation is sometimes called a variant.

Medical geneticist

A medical geneticist is a physician who is specially trained to know what types of genetic tests to order for patients, as well as how to interpret the results. Testing for genetic disorders is complex and includes many different types of tests. Interpreting the results also requires specialized knowledge, because results are typically not simple or straightforward.

Genetic counselor

This specially trained health care provider helps you understand your risk of a genetic disorder. A genetic counselor also can determine if genetic testing could be helpful for you, based on your personal and family medical and health history. After you have had genetic testing, a genetic counselor can offer information about cancer screening options and steps you can take to help prevent cancer, based on your results. Fred Hutch Genetic Counseling Service providers are all licensed, board-certified genetic counselors.

Genetic counselor A health care professional with special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. A health professional who has special training in medical genetics and counseling. Genetic counselors help patients and families who have, or who may be at risk of, a genetic condition. They help patients find out their chances of having a genetic condition or of having a child or other family member with a genetic condition. They also help patients understand their options for genetic testing, including its risks and benefits. After genetic testing is done, genetic counselors help patients understand their test results, including how the results can affect other family members. They also provide counseling and support. Genetic testing Tests that can be done to see if a person has certain gene changes known to increase cancer risk. Screening Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease Checking for disease when there are no symptoms. Because screening may find diseases at an early stage, there may be a better chance of curing the disease. Examples of cancer screening tests are the mammogram (for breast cancer), colonoscopy (for colon cancer) and Pap and HPV tests (for cervical cancer). Screening can also include a genetic test to check for a person’s risk of developing an inherited disease.

Registered nurse

Your nurse manages your care alongside your physician. They also assist with procedures and treatments. They answer questions and help with a wide range of topics, like how to cope with side effects or get other services you need at Fred Hutch.

Side effects A problem that occurs when treatment affects healthy tissues or organs. Some side effects of cancer treatment are nausea, vomiting, fatigue, pain, decreased blood cell counts, hair loss and mouth sores.

Patient care coordinator

The patient care coordinator will likely be one of the first people you meet when you come to Fred Hutch. They will gather your medical records and family health history and help guide you to the appropriate genetics or prevention care services within Fred Hutch. They work closely with you and your physician and serve as your scheduler.

Find care team profiles

Meet the caring, dedicated people who take care of you and your family at Fred Hutch.

Genetic counselor

Mercy Laurino, MS, CGC, PhD

Mercy Laurino is a certified genetic counselor. She manages Fred Hutch’s Breast and Ovarian Cancer Prevention Program, Gastrointestinal Cancer Prevention Program, Lung Cancer and Early Detection Program, as well as the Tobacco Cessation Counseling and the Genetic Counseling services. She is certified by the American Board of Genetic Counseling and licensed by the Washington State Department of Health. She is the recent recipient of the International Leader award from the National Society of Genetic Counselors.

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