When Cancer Advocacy Becomes a Lifeline

Morgan Newman shares how self-advocacy helped her overcome barriers to care and find the support she needed after treatment.

As a cancer survivor, I thought the hardest part was behind me after treatment ended. But the reality is, survivorship comes with its own set of challenges. For me, it was the debilitating side effects that lingered long after the treatments stopped. The fatigue, pain, hot flashes, and cognitive fogginess were impacting my daily life, and I desperately needed support and answers. The problem was, my surveilling oncologist wasn't hearing me, nor were they providing the care or resources I needed.

“You don’t have cancer, good for you!”

Appointments felt rushed, my concerns were dismissed, and there was always a short lecture on the need to use my dilator so they could do my exam. I left each visit feeling frustrated and uncertain about how to manage my symptoms. I was 26 years old and needed a better quality of life. Instead, it was like hitting a brick wall, and I knew I had to push for what I needed. That's when I realized the importance of self-advocacy in survivorship. I had learned the value of speaking up for myself during my social work studies and advocacy training through Cervivor School.

But it wasn't until I was faced with this situation that I truly understood its power.

I made the difficult decision to terminate my patient-doctor relationship and seek care from my treating oncologist, who was over three hours away. It wasn't an easy choice, but it was necessary not only for my mental health but for my overall quality of life. I reside in a rural state with limited specialists for my cancer. Believe me when I say that I'm grateful for the privilege of being able to make that decision — having reliable transportation, reasonable insurance coverage, and a support system that allowed me to prioritize my health.

Looking back, I realize that not everyone has the same privileges. Many survivors face barriers to accessing quality care, and it's crucial that we acknowledge and close the gap in these disparities. It is a driving factor in the work that I do every day as a community engagement liaison.

My experience taught me that advocating for oneself is crucial in survivorship. It's about being proactive, seeking out resources, and pushing for the care you deserve. Something I didn’t know I had the permission to do, and I know I’m not the only one — so I’m sharing this knowledge with all of you.

If you're a survivor struggling to be heard, know that you're not alone. Don't be afraid to speak up, seek a second opinion, or explore other options.

Your quality of life is worth fighting for.

If you're in a position to advocate for yourself, don't hesitate — your voice matters. And if you need help in advocating for yourself, it’s okay to ask for help — ask for a social worker, nurse navigator, or reach out to an organization or a friend. There is a community out there that is waiting to empower and support you!

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