Ways to Advocate for Yourself as a Cancer Patient

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.

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.

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.

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.

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.

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.

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. 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?

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.

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.

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.