Making blood cancer treatment decisions for your child

Parents whose children have blood cancer often must make decisions about treatment, as well as family, work, school, and finances, etc. To make the best treatment decisions, you need information to help you understand your child’s diagnosis and treatment options.

Gathering information and support 

You'll need to choose your child’s: 

• Oncology practice, hospital, or center where their treatment will take place
• Specialist who will develop and coordinate the treatment plan
• The type of treatment your child receives
• Whether or not you want to get a second opinion
• If a clinical trial is the right treatment decision for your child

Learn how to find a blood cancer specialist or treatment center. 

Getting a second opinion 

Leukemia, lymphoma, myeloma, myelodysplastic syndromes, and myeloproliferative neoplasms are each different types of blood cancers. What's more, each disease has subtypes. This means that the signs of the disease, how it's diagnosed and treated, and the expected outcomes vary. That's why it's essential to have the right diagnosis before your child begins or continues with treatment.

You may want to get a second or third medical opinion after your child receives a diagnosis, and before beginning or continuing treatment, especially if you're concerned about whether a specific doctor or treatment center is right for your child. It's okay to let your doctor know that you'd like a second opinion; most doctors are used to patients seeking multiple opinions, and even encourage it.

Request that your child’s doctor send their records to the oncologist who'll be providing the second opinion. Ask the doctor if the pathologist reviewing your child’s blood and marrow test results is a hematology-oncology specialist. If not, consider having their test results reviewed by a pathologist who specializes in hematology-oncology.

Insurance companies usually pay for second opinions, and in some cases, require them. (Check your insurance plan first, though.)

Learn more about communicating with your blood cancer specialist or find a list of suggested questions to ask your healthcare providers, including: 

• Your insurance company about second-opinion coverage
• During a second opinion consultation

If the second opinion you get differs from the first, ask both doctors what led them to their conclusions. You may then want to get a third opinion to help you decide what to do (again, check with your insurance provider first); or you may want to talk with your child’s treatment team about what to do next.

Questions to ask yourself

If you're not sure about whether to get a second opinion, try asking yourself these questions: 

• Am I satisfied with my child’s specialist's qualifications and experience?
• Has the specialist explained my child’s diagnosis and treatment options in a way that I understand?
• Am I satisfied with the expertise of the medical professionals involved in determining my child’s diagnosis, including that of the hematopathologist?
• Does the specialist's approach, treatment plan, and treatment center meet my child’s needs regarding health plan coverage and/or location?
• Do I feel comfortable asking all my questions?
• Does the specialist take the time to address my concerns respectfully and completely, or do I feel rushed?
• Do the doctor's staff members seem well-informed and courteous? Are they available to help me with billing concerns, medication questions, referrals to support organizations, and other information? 

Changing doctors

It's important that you and your child’s oncologist function as a team. If you're not satisfied with your relationship with their doctor for any reason, you can look for a new doctor at any point during your child’s treatment.

If you're considering changing doctors, take these steps: 

• Talk with your insurance company, family and friends, other healthcare providers, or support group members to get recommendations for a new doctor
• Call the new office and find out whether your insurance is accepted. Ask if the doctor is seeing new patients
• Schedule a consultation visit
• Arrange to have your child’s records sent to the new doctor
• Check with the new doctor's office before your consultation visit to make sure your child’s records have arrived
• Talk with your child’s current doctor about your decision

Remember: You have the right to change doctors. When you let your child’s current doctor know about your decision, you don't have to give reasons. It's enough to tell them you're doing what's best for your child. 

Is a clinical trial the right treatment decision for your child?

Advances in cancer treatment depend on clinical trials or research studies of new therapies or new therapy combinations. Researchers can design a clinical trial to test new treatment that improves response or quality of life for patients at any treatment stage. 

Talk to your doctor about whether treatment in a clinical trial is a good option for your child. 

Get free clinical trial support! Visit our Clinical Trial Support Center (CTSC).

Connect with registered nurses with expertise in blood cancers who can personally assist you or your caregiver through each step of the clinical trial process. 

Gather information 

Make any treatment decisions in consultation with your child’s doctor. You may also want to speak with one or more specialists before deciding on treatment. 

To learn more about clinical trial options, seek information from several sources, including: 

• Medical news articles
• Reports of scientific studies about treatment safety and effectiveness

You can find medical news and scientific research articles in newspapers, magazines, on the Internet, and in medical journals. However, make sure the information you read is from a reliable source.

Scientific research should answer these three questions: 

• What was the purpose of the research study?
• How was the research conducted?
• What did the researchers find? In other words, what were the results?

Getting the most from the study

When using the study results to help you consider your treatment choices, keep the following facts in mind: 

• Research results can show you how other people with a similar disease responded to different treatments, but they can't predict how any one person will respond. The results of studies with fewer participants are considered less accurate predictions of likely outcomes for other patients.
• Response rates and survival data for patients treated five or more years ago may not accurately predict what patients can expect today. Long-term survival rates are not yet available for the newest treatments. At least five years must pass after the first groups of patients receive a specific treatment to establish the five-year survival rate for that treatment.
• Survival data alone doesn’t cover potential side effects or complications of a treatment. In fact, two treatments with similar survival rates may have different results when it comes to side effects, long-term effects, and quality of life. 

How to read a research study 

A scientific or medical journal article is usually organized in the following sections:

• The abstract provides a quick summary and overview
• The introduction describes what the researchers want to learn by conducting the research study
• The methods section, also called research methods or methodology, provides information about the quality of the research study. It discusses:
• The characteristics of the research participants
• The method used to collect data
• The method used to conduct the research study
• The results section describes the study's specific and detailed findings
• The discussion section summarizes the researchers' conclusions and suggested steps for future research
• The reference section lists sources cited in the article

Does the research apply to your child’s cancer? 

Look for certain types of information about the people who participated in the research study. If you're reading a medical journal article, check the methods section.

Patient characteristics that may affect the study results (outcome) include: 

• Diagnosis, disease subtype, and risk factors
• Disease stage
• Treatment stage
• Age and overall health  

Talk with your child's doctor 

Discuss your child’s treatment options with your doctor to ensure that you fully understand: 

• The expected benefits
• The risks of side effects and complications 

Ask your child’s doctor for guidance in interpreting studies. You may also want to consider a second opinion consult.