Talk with Your Specialist
Questions to Ask the Specialist about Treatment and Other Concerns
Getting the Most out of Your Next Visit
Keeping a Health Calendar
Get More Information
Contact Us

It is important that you have good communication with your specialist and with your treatment  team. Your treatment team may include other doctors as well as nurses, social workers and nutritionists. The treatment team works together to coordinate your care.

Taking an active role in treatment decision-making can have a positive effect on your health and quality of life. Patients or parents of children with a blood cancer want to feel comfortable discussing concerns with the treatment team throughout treatment and follow-up.

Talk with Your Specialist

It will be helpful for your specialist to know how much information you would like to have. Some people want to know every detail about their diagnosis, treatment options and test results. Others want to know only the basics, explain to their doctor what their priorities or wishes are, and trust him or her to choose the most appropriate treatment. Whichever your preference is, discussing this with your specialist will help the two of you communicate better.

You can talk to your specialist and treatment team about

• Your disease
• Treatment options
• Treatment side effects
• Financial issues
• Social support needs and other personal issues.

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Questions to Ask the Specialist about Treatment and Other Concerns

Your treatment options will depend on your diagnosis, age, overall health and other factors. The goal of treatment is to harm or kill cancer cells. Sometimes treatment also harms healthy cells and this can cause side effects.

Your specialist can inform you of the treatment options available to you and the treatment side effects you might have. Side effects are different for each person. Talking about possible side effects with your specialist and healthcare team can help you plan for any side effects. In some cases, it may be possible to take your medications at home. Asking questions will help you get the most appropriate care. 

Click here for a printable question guide for discussing treatment options.

Click here for a printable question guide for discussing treatment side effects.

Click here for a printable question guide for discussing at-home medications.

Clinical trials are used to study new drugs, new treatments or new uses for approved drug or treatments. Clinical trials aim to improve treatments and quality of life and to increase survival for patients. You can talk to your specialist about whether participating in a clinical trial is right for you.

Click here for a printable question guide about clinical trials. For more information, you can view, print or order the free LLS booklet Understanding Clinical Trials for Blood Cancers. You can also watch the free LLS Web video My Clinical Trials Journey.

You can print additional copies of these and other question guides at www.LLS.org/whattoask (click on Healthcare Question Guides for a list of topics) or request that copies be sent to you by contacting the Information Resource Center at (800) 955-4572.

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Getting the Most out of Your Next Visit

Some ways to get the most out of your next consult visit with the specialist are

• Make a list of questions ahead of time. Give the list to your doctor at the start of your visit
• Tell your doctor how much you want to know. You may want to know every detail or just the basics
• Take notes. Writing down what your doctor said can help you remember it later. You may consider bringing someone along to take notes or using a tape recorder
• Ask for written information about your disease and treatment. You can read it at home and share it with family or friends
• Ask for copies of your lab test results. It is important to keep a copy of your health records
• Ask your doctor to slow down. You can also ask your doctor to explain things in another way
• Talk about symptoms. Tell your doctor about any changes in the way you feel or your activities
• Ask for help. Tell your doctor about anything you need help with, such as paying for medications.

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Keeping a Health Calendar

It can be hard to remember how you felt last month or last week, even yesterday. Keeping a "health calendar" can help you remember. You can use the same calendar to keep track of your medical appointments. Write a short note about how you feel along with your activities each day. Many people like to put other events on the same calendar too—birthdays, social plans—so that the calendar is not all about the disease and treatment, but about life.

You may want to write things like

• Tired
• Rash
• Lots of energy
• Feel great
• Bad headache
• Walked 1/2 mile
• Lunch with friends
• Cleaned house
• Treatment day—slept all afternoon
• Felt nauseated in the morning, better in the afternoon.

Share the calendar with your doctor. It can help your doctor manage your treatment and side effects better. It can also help you keep track of how many good and bad days you are having.  

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Get More Information

For more information to help you cope with your diagnosis and treatment, you can view, print or order free LLS materials including Each New Day: Ideas for Coping with Blood Cancers, Co-Pay Assistance Program, and Financial Health Matters.

For information about selecting a specialist or treatment center, you can view, print or order the free LLS fact sheet Choosing a Blood Cancer Specialist or Treatment Center.

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Contact Us

The Leukemia & Lymphoma Society
1311 Mamaroneck Avenue
White Plains, NY 10605

Or call the Information Resource Center at (800) 955-4572