Being Your Own Cancer Care Advocate

It's important to be involved in your own care (or that of a loved one) to ensure that you get the best possible care and outcomes. Your healthcare provider won't tell you what to do. You are expected to be an active participant in your care. If you are feeling too ill to be your own advocate, have a loved one take on the role. A social worker can also be an excellent advocate and coach for dealing with some of the challenges associated with managing your cancer care.

Steps for Being Your Best Advocate

• Get educated! 
  • Reading about your disease allows you to participate actively in every appointment, make educated treatment decisions, and manage side effects along the way.
  • Ask your providers to recommend reliable websites to read about your disease or provide pamphlets for you to read.
  • If you find something of interest online, print it out and bring it in to discuss with your provider. There is a lot of information online – and it isn't all good.
  • Join a support group – online or in person – it's a great way to learn more and tap into the experiences of others.
  • Take notes at appointments or have someone with you who can.
  • Keep a list of questions that come up between appointments and bring them with you to each visit with your provider.
• Communicate with your healthcare team - if something comes up, call or send a message in the portal.
  • Your oncology team can only help if they know there is a problem.
  • If you aren't sure if your symptoms are related to your treatment, call your provider. Your team is there to help you figure it out.
  • Follow up if you're waiting on test results. In busy practices, a test result may get missed or never be received from the lab or radiology site. Instead of waiting and just assuming, call and ask for your results!
• Create a binder to track appointments. 
  • Having everything in one place makes information easier to find when you need it and makes it portable. You can use a binder to keep contact information for your providers (during business hours and where to call at night or on weekends), medication lists, and treatments. Take it along to appointments or emergency room visits.
    • OncoPilot can help with blank forms to create a log of important information.
    • If you need to call your insurance company or anyone else outside of your care team, keep notes including when you called, who you spoke to, and the outcome of the call. If there is a problem, these records will be helpful.
• Take your medication as ordered.
  • Some cancer treatments are given in pill form. It's important to stick to the prescribed regimen (plan) to get the most out of your treatment.
  • For some, side effects make taking these medications harder.
  • If you feel like you are having difficulty tolerating your medications or having side effects, call your medical team BEFORE stopping your medication. Your oncology providers can help find ways to manage side effects and make it easier for you to stick to your treatment plan.
• Keep all scheduled appointments. 
  • "Lost to follow up" is a term used in medicine to refer to a patient who doesn't return for their follow-up visits. It's important to keep all scheduled appointments, including annual follow-up visits. These follow-up visits are a chance to address any problems that may arise related to your cancer treatment, provide advice for life after cancer, and detect any new problems.