Making blood cancer treatment decisions for young adults

As a young adult living with blood cancer you will have to make decisions about your treatment, as well as family, work or school, finances, and more. To make the best treatment decisions, you need information to help you understand your diagnosis and treatment options.

Gather information and support 

You'll need to choose: 

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

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

Getting a second opinion 

Leukemia, lymphoma, myeloma, myelodysplastic syndromes (MDS), and myeloproliferative neoplasms (MPNs) 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 you begin or continue with treatment.

You may want to get a second or even a third medical opinion after receiving a diagnosis and before beginning or continuing treatment, especially if you're concerned about whether a specific doctor or treatment center is right for you. 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 they even encourage it.

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

Find a list of suggested questions to ask about second opinions, including:  

• Whether your insurance company covers second-opinions
• 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 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 specialist's qualifications and experience?
• Has the specialist explained my diagnosis and treatment options in a way that I understand?
• Am I satisfied with the expertise of the medical professionals involved in determining my diagnosis, including that of the hematopathologist?
• Does the specialist's approach, treatment plan, and treatment center meet my 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 oncologist function as a team. If you're not satisfied with your relationship with your doctor for any reason, you can look for a new doctor at any point during your treatment.

If you're considering changing your doctor, 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 records sent to the new doctor
• Check with the new doctor's office before your consultation visit to make sure your records have arrived
• Talk with your current doctor about your decision 

Remember: You have the right to change doctors. When you let your 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 you.

Is a clinical trial the right treatment decision for you?

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 you. You may also want to speak with one or more specialists before deciding on treatment. 

To learn more about your clinical trial options, you can find 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? 

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. 

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 you?

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 doctor

Discuss all your treatment options with your doctor to ensure that you fully understand:

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

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