When people receive a cancer diagnosis, it can be overwhelming dealing with details of appointments and symptoms to expect while trying your best to make self-advocacy an important tool in your cancer journey. In the Own Your Health: The Power of Support & Self-Advocacy panel at the Future of Health She Media Co-lab during SXSW in early March, our experts and advocates explored the state of cancer in the US, the latest medical advancements and where gaps in science and care still exist. They also discussed the role biomarker testing plays in gaining a better understanding of cancer, insights on finding the right medical support team, and advice on how people can be their own best advocates to get the information and support they need, during, and after their cancer diagnosis.
Below, see what Paige More, Co-Founder & Chief Visionary Officer of The Breasties, 3x Emmy Award Winning Producer, Patient Advocate Consultant, and Board Member of CBRA; Dr. Michelle Shiller, the co-medical director of the Division of Molecular Medicine and Pathology at Baylor Sammons Cancer Center, and Dr. Yvette Williams-Brown, a board-certified gynecologic oncologist, had to say about advocating for your health to ensure you get the care you deserve.
One of the biggest pieces of advice, Page likes to give is that you are the expert. “Patients have to go into the doctor’s office and know that we are the experts in our own personal lived experiences,” she says. “We know our bodies best and I think a lot of time we go in and we’re afraid we’re not going to be heard or that doctors won’t trust our experiences. When we go in, we have to know that we are in the driver’s seat, that we know what’s best, and that it’s okay to ask for a second opinion if we need it.”
As a medical professional, Dr. Williams-Brown tries to help patients understand that their treatment goals are very crucial for their doctor to know so they can align their plan with their personal goals. “There’s not just one way to do something,” she says. “The key thing to understand is what the patient’s values are.”
A cancer diagnosis can be extremely overwhelming. Hopefully, although not always, you have a physician who can help guide you through the process. And if not, you may need to reevaluate your care. “Continue to ask questions,” Dr. Shiller says. “And if you don’t feel like your questions are being answered, that’s your inner voice talking to you. If the person you’re working with feels threatened by that, that’s also a signal and it may mean you need to change your course. That’s not always an easy thing to do, especially dealing with a cancer diagnosis, but in the end, it’s very important how you feel.”
During the panel conversation, Page notes that it’s hard to be empowered to get the best cancer possible when patients don’t know what to ask if patients don’t feel like they’re getting presented with all of the options. “The biggest misconception is that patients, people, and women especially don’t want or handle all of the information when that could not be farthest from the truth,” Page says. “We need to have all of our options presented to us and we deserve to have all of our options presented to us in a way we can easily digest and understand.”
It’s not uncommon to join chat rooms or talk with other cancer patients about your diagnosis. Speaking with people who understand what you’re going through can be very empowering and a way to deal with the journey post-diagnosis. Bringing a friend or family with you to your appointments can also be a form of self-advocacy. Remember, there’s not wrong with leaning on your support system during this time. Realizing you need help can be powerful and is often the first step in advocating for your own health.
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