12 Ways to Advocate for Yourself as a Cancer Patient
A cancer diagnosis can change your life in many ways. From the second you leave the doctor’s office you’ll have to navigate decisions regarding your care and personal life, as well as tough conversations with friends and family.
Throughout this process you also want to maintain your power and sense of agency in regard to decision-making. Self-advocacy for cancer patients can mean anything from switching doctors if you feel uncomfortable or unsafe to attending support groups to meet other people going through the same thing you are.
Mesothelioma patients can take self-advocacy even further. Those exposed to asbestos may be entitled to financial compensation and can advocate for themselves by pursuing legal options.
Here are several ways cancer patients can advocate for themselves.
How to Advocate for Yourself as a Cancer Patient
It’s important to advocate for yourself throughout your diagnosis and treatment. We’ve detailed how below.
1. Ask Questions
Some patients may become worried that they don’t have enough information — especially with a disease as rare as mesothelioma that might leave you with questions — while others might feel overwhelmed. Either way, there are a few questions that cancer patients can ask to become more informed during their treatment. We’ve included a downloadable question sheet you can bring along to the doctor, as well as some examples of questions to ask, including:
What type of cancer do I have, and has it spread? If yes, how far has it spread?
How can I prevent or manage my symptoms?
Should I avoid or seek out certain physical activities?
What is the goal of my cancer treatment, and what are my options?
How should I prepare for treatment?
What are the side effects of different treatment methods?
What support services are available to me financially and emotionally?
2. Choose Your Doctor Carefully
Your relationship with your doctor will be a crucial one. You want to make sure you trust your care team and feel comfortable discussing your concerns, thoughts and needs with them. However, finding a doctor can be a challenge. There are many doctor match resources available, or you can use a few general guidelines for picking someone right for you.
Research doctors who specialize in your specific diagnosis.
Confirm the doctor will accept your insurance.
Find out about the doctor’s education and credentials.
Learn about the doctor’s support staff to see who will be available to you and active in your care.
Learn how to contact the doctor at night and on weekends.
See about any services the doctor provides for patients.
Arrange to meet the doctor and staff to confirm you feel comfortable.
3. Ask for Help From Loved Ones
You can’t navigate a cancer diagnosis and treatment alone. Your loved ones will want to be there for you, and sometimes you might need to ask them for guidance and assistance. Make sure you communicate exactly what you need to avoid any conflict or miscommunication, whether it’s by using a downloadable planner sheet or catching up via weekly calls to discuss tasks.
4. Learn About Your Diagnosis
You can advocate for yourself by taking the time to understand what’s happening to your body. If you receive a mesothelioma diagnosis, understanding the signs and symptoms, like chest pain and night sweats, can help you prepare to handle them. You can also take steps to learn about your prognosis so you can make the necessary plans.
When researching your diagnosis, you should begin with reliable websites such as the American Cancer Society or the National Cancer Institute. You can then find information from websites specific to your diagnosis and read blogs devoted to your experience.
Ask yourself questions about website legitimacy to ensure you’re getting accurate information:
Who published this information?
Is the information backed up by a scientific journal or study?
Who is funding the website and what is their mission statement?
How recent is the article I’m reading?
5. Communicate Your Needs and Feelings
Your doctor, family and caregivers can’t read your mind. Communicate your needs openly, honestly and fairly to avoid conflict while ensuring you feel supported throughout this process. Instead of letting potential problems fester, being open and honest about your feelings can help everyone involved in your care and personal life. Take the time to call your loved ones or write them notes if necessary.
6. Tell Your Doctor Everything
Your doctor needs to know everything about your medical and life history to make sure you’re getting the best possible care. For example, if you’re a recreational marijuana user, you should communicate that with your care team — in fact, it could even be beneficial for mesothelioma patients. You should also communicate any new or growing symptoms, life habit changes or slip-ups in medication or lifestyle. Anything that could impact your care, you should communicate.
7. Join a Support or Advocacy Group
Once you’ve spent time learning about your diagnosis, you may also want to look into cancer support groups. Find a program in your area or attend meetings online to get to know people going through the same thing you are. They can empathize with your situation and help you feel supported.
Advocacy groups can also help you navigate financial, emotional and care concerns that you might not know how to tackle yourself.
In addition, professional support outside of the home is available online and in person. Counseling via psychologists, oncology social workers and other licensed counselors can help you navigate the emotional weight of your diagnosis and care.
8. Switch Doctors If Necessary
Remember that your care is in your hands. If your interactions with your care team make you feel unheard, disempowered or like you aren’t getting the care you need, remember that you can always switch to someone who will be a better fit. Once you find a new doctor, ask your care team to send your medical records to them.
Similarly, you can always consult a doctor for a second opinion before beginning treatment or committing to a care plan. To do so, communicate with your current doctor that you’d like to explore other options. They can recommend someone or you can find another doctor online.
9. Clarify Anything You Need
Always ask for more information. If at any point during your care you feel confused about something, make sure to ask your doctor about it. This can help you understand more about your diagnosis so you can make the decisions that are right for you. Use note-taking sheets like the one below to write down anything your doctor says that seems important or that you want to circle back to at the end of the appointment.
10. Get Financial Assistance
Cancer care and treatment come with a variety of costs. Oncology social workers and nurses can help you make a financial assistance plan. There are also financial assistance organizations available to cancer patients that can help ease some of the financial burden of treatment. Similarly, there are organizations available to help provide housing to cancer patients being treated away from home and their families. Seeking out this assistance can help you advocate for yourself by taking financial stress away from your care.
11. Keep Detailed Medical Records
You aren’t always going to be with your care team. You can help yourself keep track of any concerns or thoughts you have between appointments by using downloadable weekly health records like the downloadable one below. Use them to list notable feelings of pain, meals eaten, nausea or any side effects of medication. This way, you can remember week by week anything you want to discuss at your next appointment.
12. Seek Legal Compensation
For some diagnoses, you may be entitled to legal compensation. Many mesothelioma diagnoses that occur through asbestos exposure, for example, could have been prevented. A mesothelioma lawyer can help you fight for compensation that can help with the financial costs of your care.
Visit these websites to learn more about cancer patient advocacy.
Navigating a cancer diagnosis doesn’t have to make you feel exhausted or powerless. You can take steps to empower yourself by remaining educated, supported and in charge of your care and feelings.
Whether that means finding a cancer treatment center that works for you or learning to ask for help when you need it, everyone’s empowerment journey is different. The most important thing is taking the first step.
Share this article
Last Modified December 18, 2020