PATIENT NAVIGATOR

A diagnosis of cancer can be a shock, making you feel out of control and overwhelmed. Getting informed can help alleviate these feelings. Information resources include your healthcare team, second opinions, books, the internet, and other patients with your condition. As you learn, identify the specific questions that only your doctor can answer.

At each stage of this process—from diagnosis to survivorship—taking a systematic approach to your healthcare can help ensure that you get the care that you need. By providing this Patient Navigator, we hope to help you chart each step of your journey. Use it as a general guide, but feel free to adapt it to your individual situation and needs. You can print it out, add to it, cross out what you don’t need, and highlight what seems most important to you.

Click here to download the Patient Navigator

Navigating Cancer Step-By-Step

Detection (cancer is suspected)

  • See a doctor
  • See a specialist if necessary
  • Start a binder (to hold all information related to your diagnosis and treatment)
  • Undergo any necessary diagnostic testing
    • Get results from every test
    • Ask questions about what test results mean and take notes.
    • Take someone with you to your appointment to help listen and take notes.

Diagnosis

  • Make sure you understand the diagnosis
    • Site of origin
    • Stage
    • Spread
    • Any further classification of the cancer
    • Prognosis
  • Get a 2nd opinion
    • Tell your doctor that you will be getting a second opinion
    • Find a doctor for the second opinion
    • Have test results sent to second doctor for evaluation
    • Take someone with you to your appointment to help listen and take notes
  • Ask for and write down all treatment recommendations

Gathering information

  • Learn about different types of cancer treatment and how they are delivered
  • Learn about clinical trials
  • Learn about your specific type of cancer
    • What is the standard of care?
    • What is the cure rate?
    • What are your treatment options?
  • Evaluate your treatment options
    • What options are available to you?
    • What are the pros and cons of each option?
    • What kind of outcome does each option provide?
    • What kinds of side effects does each option cause?
    • Are there any clinical trials available to you?
    • Can you talk with other survivors about treatment options?
  • Establish your treatment goal
    • Based on your stage of disease, what is a realistic treatment goal?
    • Is important to you to preserve your ability to have children in the future?
  • Form a multi-disciplinary team of doctors
    • Choose doctor and treatment center carefully
      • Do research and ask for referrals
      • Assess education, number of patients that they treat with your condition, and the outcomes that they achieve.
    • For each doctor on your team, write down their name, their function, and their contact information.
  • Together with your doctor(s), choose a treatment plan.
    • What drugs or other treatments will be used?
    • Dose?
    • Schedule?
    • How will treatment be delivered?
    • Who will deliver treatment?
    • What side effects can you expect?
    • What kind of supportive care will you be given to prevent and manage side effects?
    • Are there steps that you should take before treatment begins in order to preserve your fertility?
  • Make plans for undergoing treatment
    • Transportation needs
    • Childcare needs
    • Home needs
    • Work responsibilities
    • Legal and financial issues
    • Emotional support

Undergoing treatment

  • Begin treatment
  • Manage side effects of treatment
    • Communicate with doctor and/or nurse about side effects
    • Take necessary measures to manage side effects to ensure optimal delivery of treatment
  • Balance activities of daily living
    • Monitor and adjust expectations
    • Get continued support with responsibilities
    • Maintain communication with employer
  • Undergo periodic testing
    • Tests to measure response to treatment
    • Ask for results of all tests and take notes
  • Create a plan for after treatment is complete
    • Prioritize post-treatment needs
    • Communicate with doctor about expectations
    • Arrange for follow-up care

Survivorship

  • Undergo regular follow-up care at scheduled intervals
  • Maintain insurance coverage
  • Establish a healthy lifestyle
  • Reconnect with friends and family
  • Become an advocate