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When you have cancer, being able to talk openly and honestly with your healthcare team is very important. Good communication helps you receive the best care.
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How to advocate for your care
- Learn about your diagnosis and treatment options
- Consider clinical trials
- Don’t be afraid to seek a second opinion
- Understand your health insurance plan, and know how to file an appeal if a claim is denied
- Follow your treatment plan
- Do not miss appointments with your healthcare team
- Take medications how your doctor prescribes them
- Always ask questions and communicate well with your healthcare team (see examples below)
- If you have trouble understanding, do not be embarrassed to ask the doctor to slow down or explain things in another way.
- Do not withhold information about your medical history or lifestyle from your healthcare team. Doing so could interfere with your treatment.
- Ask for a referral to palliative care (or supportive care)
- Palliative care can help you manage the physical, emotional, and practical side effects of cancer and treatment. Palliative care is for anyone with a serious illness regardless of age, stage or prognosis
- Download or order a copy of Palliative Care
- Create or update your advance directive. An advance directives are your instructions about future medical care in the event that you are no longer able to speak for yourself. When a person becomes a legal adult, they can complete an advance directive in case of a medical emergency.
- Download or order a copy of Advance Care Planning.
Communication with your specialist and the team coordinating your care is very important. Tell your doctor how much you want to know about your diagnosis, treatment options, and test results so you can function together as a team. Some people want to know every detail. Others want to know only the basics and trust their doctor to choose the most appropriate treatment.
Who’s who on your care or treatment team
First, it’s important to know the roles of the doctors and other healthcare professionals who will likely be on your care or treatment team and others you may encounter during treatment. Your care or treatment team may include:
- Gastroenterologists: doctors who specialize in digestive tract diseases
- General surgeons: doctors who perform surgical procedures such as splenectomies, lymph node biopsies, and other tissue biopsies
- Hematopathologists: doctor-pathologists who are board-certified in both anatomical and clinical pathology and who examine your blood, bone marrow, and tissue samples
- Hematologist-oncologists: doctors specially trained to diagnose and treat patients with blood cancers. The oncologist or hematologist-oncologist coordinates a treatment and follow-up plan of coordinated care that involves other doctors as well as nurses, social workers, case managers, and nutritionists
- Nurse practitioners: nurses who have advanced training in diagnosing and treating illness
- Oncologists: doctors who treat patients with cancer
- Oncology nurses: nurses who specialize in treating people who have cancer
- Pathologists: doctors who identify diseases by studying cells and tissues using microscopes
- Pediatric hematologist-oncologists: doctors who treat children, adolescents, and some young adults who have blood cancers
- Nephrologists: doctors who specialize in treating patients with kidney diseases
- Radiologists: doctors trained to read imaging studies such as a computed tomography (CT) scan or magnetic resonance imaging (MRI)
- Radiology or lab technicians: healthcare professionals who withdraw blood or take images of your body
Radiation oncologists, social workers, psychologists, registered nurses, and nutritionists may also be part of your healthcare team.
Make the most of every doctor visit
You can optimize your doctor visits by being prepared. The following suggestions may help:
- 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: do you want all of the details or just the basics?
- Take notes: consider bringing someone along to take notes or using a recorder
- Ask for written information about your disease and treatment
- Ask for copies of your lab test results keep a copy of your health records
- Ask your doctor to slow down or explain things in another way if you're having trouble understanding them
- Talk about your symptoms: tell your doctor about any changes in the way you feel or whether you've had to modify your activities
- Ask for help: tell your doctor about anything you need help with, such as paying for medications or keeping depression at bay
Keep a health calendar
It can be hard to remember how you felt last month, last week, or even yesterday, but this information can help your doctor manage your treatment and side effects more effectively. If you're finding it difficult to keep track of your symptoms and how you feel from day to day, consider keeping a health calendar.
You can use the same calendar to keep track of your medical appointments—or even your social plans, so the calendar isn’t all about your blood cancer and treatment.
Use the calendar to write a short note each day about how you feel, your activities, and what effect each has on the other. Include such items as your:
- Energy levels ("tired," "lots of energy")
- Overall well-being ("feel great!" "depressed")
- Symptoms ("rash," " bad headache," "felt nauseated in the morning, better in the afternoon")
- Physical activities ("walked half a mile," "cleaned house," "treatment day—slept all afternoon")
- Social activities ("lunch with friends")
Get our free Health App!
Download the Blood Cancer United Health Manager App to track your health during treatment
Manage your health by tracking your side effects, medication, food and hydration, questions for your doctor, grocery lists, and more.Available in the Apple Store and Google Play.
What to tell your doctor before beginning treatment
The more your doctor knows about you—such as your allergies, medical history, reproductive plans, and any drug or alcohol use—the better their ability will be to determine the best course of treatment for you. Tell your doctor if:
- You've taken the drug before (even if you had no unusual reaction)
- You had an unusual or allergic reaction to any drug
- You have or have had any other medical conditions, including:
- Diabetes
- Gout
- Heart disease (or abnormal heart rhythms or congestive heart failure)
- A head injury
- Infection
- An immune deficiency
- Kidney disease
- Kidney stones
- Liver disease
- Marrow depression
- Low serum magnesium or potassium
- Pancreatitis (inflammation of the pancreas)
- A history of alcoholism
- You've recently been exposed to varicella (chicken pox) or herpes zoster (shingles)
- You've had an unusual or allergic reaction to any foods such as lactose or egg whites, preservatives, dyes, E. coli-derived proteins, albumin, or retinoid (vitamin A) preparations
- You've ever been treated with radiation therapy or other cancer therapies (some cancer drugs may increase the effects of other medications or radiation therapy)
- You take any vitamins, minerals, herbs, or other supplements
- You're planning a family or have any concerns about intimacy, birth control, fertility, pregnancy, or breastfeeding
- You take any other drugs (prescription or over-the-counter)
- You use illegal or street drugs, which can increase the toxicity of certain cancer drugs
- You're a smoker
Questions to ask your doctor or care team about your treatment
You may find it hard to remember everything your treatment team tells you—so plan to take notes or bring someone along who can do it for you. Ask your doctor for any printed information about the specific cancer and treatment. If you don't fully understand something your doctor says, ask them to explain it again.
Before you begin your cancer treatment, make sure you're aware of any potential side effects and how the treatment may affect your body. Many side effects are manageable when proper precautions are taken.
Here are some questions to ask before you begin treatment:
- What are the possible side effects of this treatment? When are they likely to occur?
- What can I do to relieve the side effects?
- Are there any complementary and/or alternative therapies that I can use to help me better handle side effects?
- Do I need to be concerned about fertility or pregnancy and breastfeeding?
- Will this drug have any effect on my menstrual cycle?
- Will I have any special nutritional needs? Are there any known food-drug interactions of my treatment?
- Do I need to consume extra fluids while undergoing therapy?
- Can I drink alcoholic beverages?
- Should I be aware of any test results that could be affected by treatment?
- Will any of the medications I'm currently taking interact with this treatment?
- What are the names of the drug I will be taking? How do they work?
- How will the drugs be given and how long will each treatment last?
- How many treatments will I receive and for how long?
- Where will I get my treatment?
- Do I have a choice about when to begin treatment?
- Do I have a choice about which days or time of day to schedule my treatment?
- Will I need assistance on the day of my treatment?
- Are there signs or symptoms I'll need to watch for after I finish treatment with this drug? For how long?
- Will I be able to work or go to school while I'm undergoing treatment?
- Will this drug cause drowsiness or affect my alertness? Can I drive or do jobs that require me to be alert?
- Do I need to take to avoid strong sunlight or tanning beds while taking this drug?
We've got answers, but we've got questions too.
A blood cancer diagnosis usually means doctors appointments--a lot of them. A diagnosis comes with a lot of questions too, along with some you haven't even thought of yet. That's where our printable question guides come in. From treatments to health insurance, lab and imaging tests to getting a second opinion--we've got you covered. Open the section below to learn more.
Before you visit your doctor and other healthcare providers, it's a good idea to write down your questions or concerns. Below is a set of suggested question guides you may print or download to ask about certain topics, download and print any of the following guides:
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