If you read the Do Cancer Survivor Stories, there’s a common theme. Yes, they all had hope and many took a whole-body approach to cancer, but just about all of them had to push for answers. The theme of “I pushed back and asked for more tests / opinions / care” resonates loud and clear. All of them had to advocate for themselves. I’ve had to as well.
Whether it is trusting your intuition and pushing your primary care doctor when they’ve already said “you’re fine”, to getting a second opinion when the initial diagnosis or treatment plan doesn’t feel right – the need to advocate for yourself during cancer is critical.
Sometimes, especially when we are overwhelmed or scared, we take the first option given to us. We trust that it’s right and just want to “start moving.” But if during this process something isn’t sitting well with you, or you feel like you as a patient are not being heard, understood, or taken seriously, it’s time to pause and push back a little.
Unless you have a late-stage or very aggressive cancer, you have a little bit of time to review and get things right. This is your health – your life – you want to make sure you’re taking all precautions and steps to put yourself in the best situation possible.
Here are some ways to advocate for yourself during cancer treatment:
- Ask questions. Always remember: it’s not pushy or disrespectful to ask reasonable questions. Do your research on your specific cancer and the latest treatments. Make a list of questions you have. Good doctors will welcome your curiosity about the process and dedication to your own health. Tell them everything, ask them everything. They are experts and are dedicated to fighting cancer – trust them when it feels right, ask questions when it doesn’t. If your well-informed questions are being brushed off, or if you are being treated as an unreasonable patient, it may be time to find a better fit.
- Trust your intuition. We have the natural sense of intuition in our bodies for a reason: to protect us. For Shenell and I, trusting our feelings about our own bodies is what saved our lives. No one, not even a trusted doctor, knows your body like you do. Doctors can only go off of what you share with them. Don’t ever take the single, only option presented to you without questions and conversation.
- Don’t “go with the flow” to keep moving, and never follow something blindly you don’t understand or agree with. Always pause to ask the question of yourself “does this feel right?” or “is my team listening to me?
- Push beyond Standard of Care if needed: remember that there is a general Standard of Care. SOC is the “rubber stamped plan” for a disease that involves: treatment protocol, duration, drugs, and expected outcomes based on your cancer and stage. This is the standard plan that covers (let’s say) 80% of cases. It’s the right plan for most people based on data. The Standard of Care is a great guide, but it’s not the end-all-and-be-all. If you want more tests, to participate in a clinical trial, or are seeking supplemental care – ask for it. Doctors are working hard and many are too overwhelmed with their caseload to create bespoke plans for everyone. If you feel like additional treatment or therapies are needed for your case, advocate for more and they will tell you your options.
- For example, I asked my doctor if I could extend my oral chemotherapy to overlap with my immunotherapy for 6 months. That combination was trending very positively in trials. He thought it was a great idea and we made it happen.
- Communicate your feelings and needs with loved ones. Advocating for yourself doesn’t just stop at the doctor’s office. Telling the people around you what you’re feeling and what you need is paramount to your mental-emotional state, and to the strength of your relationships. Help comes in a few ways: logistical support, emotional support, task support. There’s so much going on, sometimes our feelings and basic needs get lost in the shuffle, or aren’t shared because we are afraid to scare those who are close to us – or afraid of what they’ll say in return. Be honest, ask for help, share what you need. People are desperate to help you, and your relationships will deepen. Let them in!
- Ask for help with practical tasks (kids, groceries, food, laundry).
- Ask for someone to come with you to appointments
- Vocalize your need to vent and be heard without judgment
- I highly recommend a cancer therapist to help you learn how to ask for what you want and avoid common challenges during cancer.
- Join an Advocacy group for support. Advocating for yourself during cancer across your medical team, insurance provider, and family can be a lot. If you need guidance or want to hear from Survivors, joining an Advocacy Group can help.