The Cancer Checklist - What to Do When You're Diagnosed

Authors: Claire Thevenot, RN, OCN, BCPA Editor: Rachel Westlake, BCPA

Take a Pause
Before you take action, it’s important to give yourself time to process your emotions. Allow yourself time to grieve, cry, and simply feel all of the overwhelming feelings that come with a life-altering cancer diagnosis.
Find a Support System
Cancer can be emotionally and logistically overwhelming. Don't face your diagnosis or treatment alone. Enlist the help of a support person – a trusted friend, family member, or patient advocate – who can assist you in navigating the process by researching physicians, formulating questions, and attending appointments with you (via phone or teleconferencing if needed), taking notes, and organizing paperwork.
Do Your Research
Being informed will help you better understand your diagnosis and feel more prepared to make decisions about your care. Take time to research your diagnosis and doctors in your area who specialize in that type of cancer. Identifying specialists is especially important for rare cancer types, which will benefit from a doctor familiar with that specific diagnosis. However, remember to proceed with caution when doing your research. Make sure you consult reputable sources (Cancer.gov, the American Cancer Society, and academic institutions are all safe bets). Remember that statistics only speak to averages, not individuals. Each person with a cancer diagnosis has their own unique experience and circumstances.
Seek a Second (or Even Third) Opinion
Before undergoing treatment, consider seeking multiple opinions from different medical professionals. This ensures you have the expertise of more than one professional behind you; having a second opinion can also provide peace of mind when making treatment decisions. It is helpful for your care team to be on the same page. Let your doctors know if you are seeking another opinion. If you are afraid to share with your doctors that you're seeking another opinion, remember that asking for a second opinion is common. Many doctors welcome the input of other medical professionals.
Get Organized
You will get a lot of paperwork, including copies of test results, medical visit summaries, bills, and insurance statements. Find a way that works for you to organize all of this information before it piles up so you can easily access medical records and handle insurance and billing.
Take Care of Your Emotional Wellbeing
It can be easy for your emotional wellbeing to fall by the wayside when focusing on your physical health and dealing with the logistics of cancer treatment. However, it’s easy to get overwhelmed, so make sure you’re taking care of yourself emotionally as well. Join support groups, exercise, practice mindfulness, or see a therapist regularly – whatever you need to address your mental health.
Set Boundaries
Taking care of your emotional wellbeing also involves setting boundaries around how you talk about your cancer diagnosis and experience. When I was diagnosed with stage-4 breast cancer, one of the things that surprised me most was the volume of misguided or inappropriate comments made to me by caring and well-intentioned people who didn't understand what I was going through. These remarks ranged from sharing stories of friends with the same type of cancer who may have had bad outcomes to offering miracle cures. While not always negative, these comments also put the emotional burden on me to respond to a sensitive topic. It’s perfectly okay to politely shut down these conversations; find a way to tell people who offer unsolicited advice that you're working with your care team to find the best treatment for you, and leave it at that.

The first few weeks after a cancer diagnosis are stressful and scary time. Taking care of yourself, being proactive and informed, and surrounding yourself with a support system – whether it's family, friends, a support group, or a patient advocate – will make this time a lot less stressful.

This work is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License (CC-BY-SA-4.0), available at https://creativecommons.org/licenses/by-sa/4.0/. SPDX-License-Identifier: CC-BY-SA-4.0

Signed-off-by: Claire Thevenot claire@claritypatientadvocates.com