Diagnosed with a Blood Cancer? Important Questions You Might Not Think to Ask

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What is my actual diagnosis? Find out your exact diagnosis. Ask your doctor to write down the exact name of your sub-type and take the paper with you. For example, knowing you have “a B-cell lymphoma” isn’t good enough. Follicular and diffuse large B-cell are both B-cell lymphomas but with very different prognoses and treatment plans. Leukemia also has different sub-types. Knowing your specific sub-type helps you understand what disease you are dealing with, how aggressive it is, and what to expect from treatment. You can also contact The Leukemia & Lymphoma Society’s Information Resource Center to ask about appropriate clinical trials or to be connected with a survivor who has been treated for the same disease.

Is doing nothing really an option? It may sound crazy to hear a doctor tell you to just “watch and wait” but for certain blood cancers that can really be the recommended treatment plan. Some patients with chronic lymphocytic leukemia, indolent non-Hodgkin lymphomas, or in the early stages of some other blood cancers, can go for years with no treatment at all as long as no other issues arise. However, it would still be important for you to continue to go for regular visits to be monitored by your doctor.

Should I go for a second opinion? If you want to confirm your diagnosis or if a treatment decision has to be made and the answer isn’t clear cut, it makes sense to seek out a second opinion. It can also be the best way to find out what the next steps may be regarding your care. Going to a large comprehensive cancer treatment center that serves more patients and conducts on-site research may also give you more choices. Bring your medical records and tests as well as pathology slides (so they can be viewed in another lab), and write out your questions ahead of time (bring one of our printable question guides with you). Bringing a family member or friend is also a good way to remember the detail and be able to discuss your options afterward.

What specialist should I see? Find a hematologist (rather than an oncologist) for long-term care. A hematologist is a specialist in blood disorders and malignancies and has a deeper understanding about the diagnosis and treatment of issues involving the blood. Blood diseases are very complex!

Should I consider experimental treatment options? Ask whether a clinical trial might be right for you. Enrolling in a research study could allow you to possibly benefit from a therapy you wouldn’t otherwise have access to. You might be enrolled in a trial where you receive a different drug or have one added to your current treatment plan. A clinical trial is most often considered for a disease that isn’t so common or is difficult to treat. Participants can always opt out of the trial or move to a better-performing study group if needed. Find out what trial options you may have, what’s involved, and what questions you should ask if you’re interested in participating.

Should I speak up? You always need to be your own advocate when it comes to healthcare. Being diagnosed with a blood cancer can feel scary and like life is out of control but there are many things you can do. Don’t be afraid to ask questions and express what you need. You have every right to the information that will help you make informed decisions about your treatment, your care and your life. Talking to your doctor or health care professional about your fears and concerns, any drug side effects, your daily activities and diet, and the supplements or vitamins you’re taking will allow them to offer guidance.

How do I get through this? It’s perfectly normal to need extra support while you go through this journey. Whether it is peer support or talking with a professional counselor, having someone to talk to beside friends and family can be very important. If in-person support groups aren’t for you, try online resources, including chats, discussion boards, webcasts and the LLS Community. You can also call LLS’s Information Resource Center for other support resources or the opportunity to talk with others dealing with the same disease. It is important to know you are not in this alone. LLS is also here to help in whatever way we can.

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