Knowing your diagnosis and treatment will help you be part of the team.
Getting diagnosed with blood cancer is likely not something you ever expected, and it might not be something you know a lot about. When going through treatment, it might be tempting to just let the doctors do their thing and not ask questions—they know what they’re doing, after all.
But here’s the thing: Having open and honest conversations can help you get all the information you need to feel more confident in your cancer treatment, improve your quality of life, make more informed decisions about treatment, and possibly even improve your treatment outcome.
“I do find that if patients truly understand the diagnosis and the treatment, they are more likely to be compliant with their treatments,” says Ruthee-Lu Bayer, MD, director of stem cell transplantation at Northwell Health. “[They] also have a little bit more peace of mind with what is happening to them.”
If you’re overwhelmed or not sure where to start, begin with these basic but crucial questions about your blood cancer treatment. Don’t be afraid to write them down and bring them into your appointment if you fear you’ll forget.
What is my exact diagnosis? There are different types of leukemia and lymphoma, and the severity can vary. “Based on the exact diagnosis of the disease, the treatment will vary,” says Dr. Bayer. The condition names can be tricky, so ask your doctor to write it down on paper that you can take with you.
What are the recommended treatments for my diagnosis? Find out the pros and cons of this treatment, including potential side effects. Don’t be afraid to ask why it’s recommended, or about how much it will cost. Common treatments include chemotherapy, immunotherapy, and radiation therapy, to name just a few.
What health professionals are available to help treat my condition? Treating blood cancer is complex, and your treatment team will vary based on what subtype of blood cancer you have, your age, and the location of the cancer. Instead of a general oncologist, you’ll likely be referred to a hematologist-oncologist, who specializes in blood cancer. “Other professionals that might be on their medical team might include a nutritionist, a cardiologist, a pulmonologist, and often … palliative care physicians,” says Dr. Bayer.
How will treatment affect my quality of life? Knowing what side effects may occur, how much work you may miss, and what lasting effects you may have can make you more prepared to handle it, which can reduce stress.
What are the experimental treatment options? There might be clinical trials and research studies that are right for you. Clinical trials evaluate new medications or procedures for their effectiveness and rely on willing volunteers, who may benefit from the avant-garde treatment. This is especially true for people with rarer forms of blood cancer, according to Dr. Bayer.
Should I get a second opinion? Treating blood cancer doesn’t always have an obvious “right” answer. For more confidence in your treatment approach or in the diagnosis itself, a second opinion may help.
What resources and methods can help me cope with treatment? Many communities have support groups for people with cancer and their family members, sometimes in the healthcare facility itself. There are also mental health professionals that specialize in helping people with cancer.
These questions are a great place to start, but you’ll likely have other questions as treatment progresses. Don’t be afraid to speak up or to ask for clarification. After all, you are part of the team, too—if not the most important member, according to Dr. Bayer. “We try to encourage patients to advocate for themselves and speak out and to understand their diagnosis, their treatment, and what lies ahead of them,” she says.
Before each appointment, write down questions, a list of symptoms you’re experiencing, and a list of your current medications, according to the American Society of Hematology. During your appointment, ask your doctor to clarify words you don’t understand, and make sure all of your questions and concerns have been asked and addressed. If you forget to ask something or don’t remember the answer, don’t be afraid to call the office and ask your doctor over the phone.
Being well-informed is one part of playing an active role during the cancer treatment process to improve your quality of life.
Diagnosed with a blood cancer? Important questions you might not think to ask. Rye Brook, NY: Leukemia & Lymphoma Society, 2016. (Accessed on October 17, 2018 at http://www.lls.org/blog/diagnosed-with-a-blood-cancer-important-questions-you-might-not-think-to-ask.)
Printable question guides. Rye Brook, NY: Leukemia & Lymphoma Society. (Accessed on October 17, 2018 at http://www.lls.org/managing-your-cancer/communicating-with-your-specialist/printable-question-guides.)
Questions to ask your doctor. Leukaemia Foundation. (Accessed on October 17, 2018 at https://www.leukaemia.org.au/disease-information/living-with-myeloma/questions-to-ask-your-doctor/.)
Talking with your doctor. Washington, DC: American Society of Hematology. (Accessed on October 17, 2018 at http://www.hematology.org/Patients/Your-Doctor.aspx.)
Understanding different types of treatments. Rye Brook, NY: Leukemia & Lymphoma Society. (Accessed on October 17, 2018 at https://www.lls.org/managing-your-cancer/making-treatment-decisions/understanding-different-types-of-treatments.)