Stories of progress, inspiration, and information in overcoming osteosarcoma.

Osteosarcoma patient Eva sitting in a white triangular tent, with a tray of flowers and food spread out in front of her. She is holding a white cat and smiling.

Cancer Patients: How to Be Your Best Advocate

Osteosarcoma patients share how they learned to ask questions, push for the medical care they needed, and be their own health advocate.

Receiving a cancer diagnosis can be overwhelming and daunting. As you face each challenge, there is a powerful role that you can embrace — becoming your own best advocate.

These five cancer advocacy tips can help you advocate for yourself, your treatment, and your overall well-being.

1. Listen to Your Body

Medical expertise plays a crucial role in decision-making. But personal experience and intuition provide valuable guidance as well.

Osteosarcoma survivor Eva’s intuition saved her life. Doctors kept telling her that the lump behind her ear and the pain in her neck were nothing to be concerned about. But Eva sensed something was not right. Multiple scans later, she learned that the lump was benign, but the neck pain came from osteosarcoma in her collarbone.

“For anyone who has just been diagnosed or is experiencing early signs of osteosarcoma, my advice is to listen to your body,” Eva says. “See as many doctors as necessary.”

“For anyone who has just been diagnosed or is experiencing early signs of osteosarcoma, my advice is to listen to your body. See as many doctors as necessary.” —Eva, an osteosarcoma survivor

Osteosarcoma survivor Sloane Dyer also had to trust their instincts. Sloane was told that there was nothing doctors could do about their chronic pain following a limb salvage surgery (LSS). When the pain became too debilitating, Sloane sought out a second opinion and ultimately opted for a limb amputation.

“Rather than live with chronic pain the rest of my life, I chose to listen to my body,” says Sloane. “It’s an opportunity to have autonomy over my body and hopefully a less painful life.”

2. Seek a Second Opinion

Getting a second opinion is an important part of advocating for yourself at the doctor. Another oncologist may offer a new perspective or alternative treatment options, or they could confirm the initial diagnosis and treatment plan, giving you peace of mind.

In osteosarcoma patient Lydia’s case, her parents felt that their local doctors were not equipped to handle such a rare disease. After multiple consultations with specialists, they finally found a surgeon they could trust. “I had to trust my instincts,” says Jessica, Lydia’s mother. “I kept asking questions and kept speaking up for Lydia. No one else was going to.”

3. Speak Up and Ask Questions

Being an empowered cancer patient means asking questions about treatment options, potential side effects, and quality of life. That might mean talking to your doctor about fertility preservation — a common concern for young adult cancer patients — or financial considerations to help afford treatment.

Damon Reed, MD, director of the Adolescent and Young Adult Program at Moffitt Cancer Center, explains that engaging in open and honest conversations with your cancer care team can help you make informed decisions that align with your personal values and goals.

“For many young adult patients, they are now able to dictate how they want their treatment to go and how they want to lead their lives,” he says. “That sense of control makes a big difference.”

4. Bring a Friend or Family Member to Medical Appointments

Even if you are of legal age to make your own treatment decisions, it can be overwhelming to go it alone.

Dr. Reed says his patients have found it helpful to bring family members or close friends with them to doctor’s appointments who can advocate for the patient’s wishes. Bringing someone you trust can make the appointment less daunting, and it gives you someone else to process with afterward.

5. Reach Out for Additional Support

Cancer treatment is physically and emotionally demanding. Recognizing the need for additional support is another way you can advocate for yourself. Palliative care, which focuses on improving patients’ quality of life, can be an invaluable resource.

“Palliative care helps people live their best life for as long as possible,” says Abby R. Rosenberg, MD, Chief of Pediatric Palliative Care at Dana-Farber Cancer Institute and the Director of Palliative Care at Boston Children’s Hospital. “It is an extra layer of support that helps patients and families manage the stressors of serious illness.”

Palliative care clinicians like Dr. Rosenberg work closely with oncologists to alleviate symptoms, manage pain, and address psychological and emotional well-being. Having that additional person on your care team to advocate for your healthcare can provide comfort and relief.

Even with a cancer diagnosis, where so much is outside your control, you have the right to be heard, respected, and involved in your care. Becoming your own cancer advocate can allow you to shape the decisions affecting your body and your life.