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6 Ways To Better Advocate for Your Care With Leukemia

Posted on April 19, 2024

It’s important to advocate for yourself and your care throughout your journey with leukemia. There will be many points during your leukemia treatment when you’ll need to provide your input, and you should always feel comfortable voicing any thoughts, opinions, or concerns you have to your doctor.

When it comes to your cancer care, there are no dumb questions. Furthermore, doctors are sometimes pressed for time and may not explain every detail of your care if you don’t ask about it. While your oncologist (cancer doctor) and other health care specialists will be the driver of your leukemia treatment decisions, consider yourself an active passenger whose voice matters.

Read on to learn about six ways you can better advocate for your care with leukemia.

1. Prepare for Medical Appointments

One way to take a more active role in your leukemia care involves preparing for your medical appointments. During these visits, a lot of information may be presented to you. It can be overwhelming and difficult to digest new information and news about your condition. This is why preparing ahead of time is so important.

Before appointments, sit down and think about how you’ve been feeling. Note the questions you have regarding your medications, your diet, possible side effects you’re experiencing, and what you can and can’t do during treatment.

Better yet, keep a running list of questions on a piece of paper or an app on your phone. This way you’re less likely to forget questions as they cross your mind. Bring your list of questions with you to your next medical appointment, and discuss them with your doctor.

2. Bring Support to Your Medical Appointments

Dealing with leukemia and undergoing treatment can affect your energy levels, concentration, and ability to think clearly. Thus, it can be helpful to bring a trusted friend or family member to support you during your appointments. This person can help advocate for you, make sure your questions are heard, and record important information from your doctor.

Asking a loved one for support with medical visits may be intimidating, but more often than not, people are happy to help and assist their friends in times of need. Just think, would you support a friend in this way if they asked you for the same type of support?

3. Be Honest With Your Oncologist

Be honest with yourself and your oncologist throughout your cancer treatment. The goals of cancer treatment typically include killing cancer cells, preventing cancer from spreading to other parts of the body, and achieving remission (a period of reduced or no symptoms).

If you feel you have different goals or want a different outcome from your cancer treatment, tell your doctor. Some treatments may have side effects that can interfere with your ability to do activities you enjoy or value, so make sure your doctor knows what’s important to you.

Help your doctor put your treatment goals into perspective, whether that’s improving your quality of life, decreasing fatigue, or reducing pain or other symptoms. Sometimes they can suggest additional or different treatments if your goals change or unbearable side effects crop up.

4. Ask About Leukemia Care Resources

Often, cancer centers have resources available for people going through treatment. Resources may be financial or social and emotional. Different nonprofits like Cancer Care and the Leukemia and Lymphoma Society offer leukemia support resources like counseling, financial assistance, and workshops.

The cancer center where you receive treatment may also have a variety of resources. Not all resources are publicized, and your doctor might not mention them unless you ask. Ask about different resources they offer for people with leukemia so you can get connected to those that may benefit you.

5. Explain Your Barriers to Care

Do you have difficulty sticking with your prescribed treatment plan? If so, you may be nervous to share this information with your doctor. However, if you tell them why you’re having trouble sticking to your treatment, there’s a chance that they can offer support and suggest ways to help overcome hurdles.

Barriers to care include:

  • Being unable to afford medication or treatment
  • Being unable to get transportation or drive yourself to medical appointments
  • Living far away from a pharmacy or cancer treatment center
  • Not having health insurance
  • Lacking social support (such as friends or family)
  • Having a language barrier

If these or other obstacles keep you from following your leukemia treatment plan, it’s important to tell your oncology provider. These factors can weigh into your treatment options and decisions. Knowing about them can help your doctor determine a treatment plan you can better stick with.

6. Find Out About Clinical Trials for Leukemia

Clinical trials are research studies that involve people and aim to develop new treatments and therapies. Sometimes, participating in clinical trials gives you access to treatment you wouldn’t have otherwise.

Doctors might not always tell you about current clinical trials. If you’re interested in learning about clinical trials or participating in one for leukemia, ask your oncologist. Add this topic to your list of questions to bring up at medication appointments.

Talk With Others Who Understand

MyLeukemiaTeam is the social network for people with leukemia and their loved ones. On MyLeukemiaTeam, more than 17,000 members come together to ask questions, give advice, and share their stories with others who understand life with leukemia.

Do you have leukemia and want to better advocate for your care? Do you have any tips about advocating for your care with leukemia? Share your experience in the comments below, or start a conversation by posting on your Activities page.

Posted on April 19, 2024
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Elizabeth Wartella, M.P.H. is an Associate Editor at MyHealthTeam. She holds a Master's in Public Health from Columbia University and is passionate about spreading accurate, evidence-based health information. Learn more about her here.

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