Being Your Own Cancer Care Advocate

Author: Christina Bach, MBE, LCSW, OSW-C
Last Reviewed: August 05, 2022

In today's busy healthcare practices, you need to be involved in your own care (or that of a loved one) to assure the best care. Your physician will no longer tell you exactly what to do. You are expected to be an active participant in patient centered 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.

These steps will help you to become your own best advocate and take control of your care.

  • Get educated! An educated consumer is our best customer – that old adage stands in healthcare too. 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 care providers to recommend their favorite 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 healthcare team. 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 it to each visit with your provider.
  • Communicate with your healthcare team - if something comes up, call! Too often people come to a scheduled visit only to find they have been unnecessarily suffering for the last few weeks with (insert side effect). Your oncology team can only help if they know there is a problem. If you aren't sure if it is related to your treatment, call. Your team would rather help you sort it out than have you feeling bad alone.
  • No call is not necessarily good news! If a test is worth doing, the result is worth knowing.
    • In busy practices, a test result may get missed or never be received from the lab or radiology site.
    • Don't assume that if no one calls you, the results are normal. Call and ask for your results.
  • Create a binder to track appointments. Having everything in one place makes it easy to find when you need it and makes it portable – take it along to appointments or emergency room visits. keep contact information for your providers (during business hours and where to call at night or on weekends), medication lists, and treatments.
    • OncoPilot can help with blank forms to create your log.
    • If you need to call your insurance company, or anyone else outside your care team, keep notes including when you called, whom you spoke to, and the outcome of the call. If there is a problem, these records will be helpful.
  • Take your medication as ordered.
    • These days, many cancer treatments are given in pill form and patients must stick to the prescribed regimen to get the most out of their treatment.
    • For some, side effects make taking these medications tough.
    • If you feel you are having difficulty tolerating the medications or having side effects call your medical team BEFORE stopping the 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 happens too often, particularly when oncology patients get to the point of annual follow-up visits. Those follow-up visits are a chance to address any problems that may arise related to the cancer treatment, provide advice for life after cancer and detect any new problems.

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