Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.

The Enemy Inside Me: Brandi’s Journey of Hope and Survivorship After Ewing Sarcoma

In 2008, Brandi Benson and her sister both enlisted in the military. They saw the military as an opportunity to find security and a stronger, sturdier foundation to build their life upon.

During basic training, Brandi prepared for what her time abroad might entail. She learned to shoot an M16, developed life-saving and first aid measures in case anyone in her unit was injured, and began honing her mental resilience.

Six months later, Brandi was deployed to FOB Echo in Ad Diwaniyah, Iraq—a Red Zone located just 198 miles south of Baghdad.

Given the location and the proximity to significant conflict, Brandi assumed that her time in Iraq would include clashes and fighting of some sort.

What she didn’t know? That the biggest fight would be one she faced in her own body: Ewing sarcoma.

Since her diagnosis, Brandi has reflected on what it means to be a cancer survivor and advocated for others living with cancer, including through initiatives like Survivorship Today, which aim to share stories of people across the country who have been affected by cancer and advance our collective understanding of what it’s like to live with the disease today.

The Start of Brandi’s Journey

At FOB Echo, Brandi, then 24 years old, was in the best shape of her life. She could run miles and complete push-ups better than ever before; her days often consisted of three workouts. With a laugh, she shared:

“I had a six pack. Do you know how hard it is to get a six pack as a woman?”

Then one day, while stretching, Brandi noticed a lump in her leg. She wasn’t concerned. After all, she was healthy. Healthier than ever before.

But the medics on her team, and some others that she showed the lump to, were worried that the lump could be more devastating. Brandi was sent to Baghdad for testing. She said:

“I had no open wounds or broken bones. So, where I was sent, nobody saw my situation as an immediate concern. I was checked out, but the doctors didn’t seem to really know what was going on. I was given the option of either returning to FOB Echo or traveling to Germany for further tests. Had I not advocated for myself and decided that I needed to get an MRI in Germany, I probably would have died.”

When Brandi reached Germany, the tests began. The reality of her situation began to sink in: something might really be wrong. At the same time, she was being given limited information by the hospital she was at. The doctor wasn’t really sure of the diagnosis—and his words to Brandi were more frightening than reassuring. She explains:

“He told me not to get lost in the system. But he also said that he hoped and prayed that it was not Ewing sarcoma.”

Brandi was initially misdiagnosed with a nerve sheath tumor after an MRI and biopsy. When she was sent home, she dove into research on nerve sheath tumors and Ewing sarcoma. She was shocked to learn that either way, she might be facing cancer.

Cancer: a heavy, hulking, emotional word. A word that conjures up many misconceptions and fears. A word that, for many, means death—even though this is not always the case.

After being transferred to Walter Reed Medical Center for a new biopsy, Brandi learned the truth: that she did not have a nerve sheath tumor, but that she did have Ewing sarcoma. It was the first case of Ewing sarcoma that the doctors had seen. She shared:

“All I could think about was my other doctor saying that he prayed it wasn’t Ewing sarcoma. Then everyone at the Medical Center was telling me these horribly negative things. The cancer might spread to my lungs, spinal cord, and brain stem. I should amputate my leg. I was told that I had one year left to live and if I survived, no more than five years.”

About Ewing Sarcoma

Ewing sarcoma is a rare cancer of the bone or soft tissue surrounding the bone. While it can occur in bones across the body, Ewing sarcoma most often forms in the hip bones, ribs, or long bones like the femur, tibia, or humerus. The exact cause of this cancer is not well-understood. However, research has shown that some chromosomal changes—such as the fusing of genetic material between chromosomes 11 and 12—may contribute to its development. Ewing sarcoma is most common in those between ages 10 to 20, and more common in males than females.

Symptoms of Ewing sarcoma may include:

• Fever
• Appetite and weight loss
• Redness, pain, or swelling around where the tumor is located
• Fatigue
• Numbness or tingling

Ewing sarcoma can metastasize (spread) to other areas of the body. Treatment may include chemotherapy, surgery, radiation, immunotherapy, or targeted therapies. In Brandi’s case, she shared:

“I had 101 rounds of chemotherapy in about 10 months.”

A Mother’s Love

At first, Brandi found it incredibly difficult to cope with her diagnosis. She felt that since the doctors were experts, they must be right about her prognosis, explaining:

“I wasn’t used to asking questions on my behalf or advocating for myself. And when you’re in this situation, it’s sometimes hard to even know what questions to ask. If my mom had not dropped everything in Texas to come take care of me in the hospital, I don’t know if my story would end the same. I was ready to check out. I was depressed and suicidal, and if I was going to die, I wanted it to be on my own terms. Thank goodness I had my mom there. She was the one asking questions, doing research, and really bidding on my behalf. She changed my entire trajectory.”

The spread of constant negativity and doubt about her survival trickled into Brandi’s room, worsening her mental health. It was her mom who put an end to this. One day, her mom marched to the front of the room and stuck a note on the door. It informed hospital staff that nobody was to enter the room unless they were taking Brandi’s vitals, feeding her, or giving her medication.

Shortly after, Brandi’s mom sat her down for a more serious talk:

“She told me, ‘I know the doctors say you’re not going to make it. The statistics are against us. But you can’t give up. There are miracles every single day. Why can’t you be one?’ That really resonated with me and shook me out of my funk. If my mom believed that I could do it—and she knows me, and the doctors have no idea who I am—then why am I feeding into that narrative?”

Her mother’s positivity, hope, and patience filled Brandi with light and comfort. Even when Brandi was hallucinating during cancer treatments or finding it difficult to learn to walk again, her mom was there with a kind word and a constant smile.

Brandi had also gotten married young. Her (now ex-) husband, unable to cope with her cancer and the prospect of her passing away, had started a fairly visible affair; without her mother by her side, Brandi doesn’t know how she would have navigated dealing with the stress. She spoke about some of the challenges of dating and relationships with cancer in a discussion with Survivorship Today.

She said:

“My mom is just the most loving and patient mother in the world. She is the reason that I’m here today. I didn’t do it by myself. She pulled me through and helped me when life was really tough. I started responding to treatment better. I had a more hopeful outlook on life. My mom really changed everything and became the beacon of light I needed in that dark period.”

Out of the twelve people in her ward who had ended up in the hospital from her deployment, Brandi was the only one who survived. As she reflected, she said:

“It just made me realize how powerful our thoughts are. How powerful our belief in ourselves can be in getting us through times we never thought we could manage.”

Participating in Survivorship Today

As an advocate and a proponent of increasing survivorship awareness, Brandi chose to participate in Survivorship Today, which she explained is:

“A remarkable collaboration with Bristol Myers Squibb that endeavors to eliminate the often hidden world of long-term cancer survival. This series is not just about statistics or medical breakthroughs, but the raw and unfiltered human experiences that define the lives of countless individuals who have battled cancer. You will find resilience that knows no bounds even when life’s path takes twists and turns, emerging on the other side with scars and unwavering courage and hope.

It has been absolutely amazing to share my story and help others. When our back is against the wall and we’re trying to figure out next steps, we want advice from others who have done this. I’m so grateful that I can provide hope and positivity because, when I was on my journey, I didn’t have programs like Survivorship Today. I didn’t see people who looked like me who had this cancer and the stories I heard were grim. There was nothing to pull hope from. Through Survivorship Today, I want to be the beacon of light in the darkest nights. I want to show that, even after cancer, you can thrive. Cancer can be a page out of your book, but it doesn’t need to be the whole story.”

Throughout her work with Survivorship Today, Brandi has participated in video interviews on life with cancer—and has also worked to reduce some of the myths and misconceptions about cancer, such as:

• Cancer can only happen in certain places in the body.
• You only get cancer if you smoke or drink.
• Cancer only occurs in older individuals.

As Brandi shared:

“It doesn’t matter if you’re old or young, or where you live, or your socioeconomic status. Cancer is an aimless bullet with anybody’s name on it; you never know who it’s going to hit. That’s part of why I love participating in Survivorship Today. It gives cancer survivors, with our own perspectives and different cancers, the chance to share our common thread: how appreciative we are for a second chance at life.”

The Enemy Inside Me

Outside of her advocacy work with Survivorship Today, Brandi has also shared her story through writing her own memoir, entitled: “The Enemy Inside Me.” As she explained:

“I left the war early to fight the enemy within myself.”

Initially, after her diagnosis, Brandi began logging her experiences in a journal. Her nephew was two at the time; if she was to pass away, she wanted her nephew to have something to remember him by.

But she also made a promise as she prayed each night: that if she survived, she would change the journal and begin writing a book.

Her memoir details her experiences as she moved from diagnosis into treatment, learning to overcome adversity along the way.

A cancer journey is never easy. But Brandi has learned so much along the way. If she can get across a message to others who are fighting cancer, if she can reach one person and provide hope, that is all that matters. She shared:

“To those who are going through this—navigating the terrain by yourself can be hard. Try to find a support system, someone who will advocate on your behalf and be there no matter what. It’s hard to retain information when you’re in a state of shock. Also, remember that anything is possible. Cancer is not an automatic death sentence. Don’t give up on yourself. Miracles happen every day.”