My Sarcoma Story – Leah

Leah and her boyfriend, Corey, at Race to Cure Sarcoma San Francisco

Leah Bertuccelli never expected to receive a cancer diagnosis at the age of 25. Growing up healthy and active, cancer was not on her radar. Before her diagnosis, she had no idea what a sarcoma was. She had been working as an Industrial Designer in Sacramento and everything seemed to be going right – she had bought her first house with her boyfriend, went to the gym almost daily, and had competed on the University of Washington track and field team during college.

That all changed in the summer of 2022 when she noticed a painless, grape-sized nodule near her vulva.  The next day, Leah booked an appointment with her gynecologist.

Initially diagnosed as a “cyst” that would drain on its own, the nodule grew to the size of an egg within a month and a half, prompting Leah to return to her doctor. This time, a biopsy determined that the “cyst” was actually rhabdomyosarcoma. What followed was a whirlwind of action to get Leah into treatment with a sarcoma expert. Leah completed a grueling protocol of radiation and 10 cycles of chemotherapy and began to plan her future again.

“When I was diagnosed, I found most information about what a sarcoma is through SFA. I did most of my research through the SFA site and was able to understand what was happening with my body,” Leah shares.

However, just 3 months after finishing her first line of treatment, Leah found two more small lumps on her body. Worried, she brought them up to her oncologist who for a second time diagnosed them as cysts and suggested waiting until the next PET scan to take any further action. Leah thought, “I have never had cysts before, why would I get them now?” and knowing her body well, Leah advocated for a biopsy. Sure enough, the results showed Leah’s rhabdomyosarcoma had already returned.

“The results were devastating. I couldn’t believe I had gone through almost an entire year of painful chemotherapy and radiation just to have to go through it all over again. But I do it because what other option is there? I’m fighting for my life because I love my life. Although these treatments knock me down, I will not allow them to keep me down” Leah says.

Leah’s story highlights the importance of research in finding new treatments and improving outcomes for those affected by sarcoma. This is what motivates her to advocate for awareness and research.

“I want to raise awareness for the people like me who never thought they could get cancer. Because of how rare sarcomas are, not as much research and resources are put towards finding new cures and chemotherapies as other more common cancers. Everyone deserves a fair chance to fight this horrible disease. The opportunity to cure sarcomas begins with research,” Leah emphasizes.

Leah also hopes to see more research go toward childhood sarcomas, stating, “the same chemotherapy being used for many childhood sarcomas today have been used for decades. There needs to be advancements on these harsh treatments for children.”

Leah’s journey has also taught her the importance of self-advocacy. She shares, “With awareness, instead of ignoring the weird lump on your body that’s ‘probably nothing,’ we can be informed and get checked. Saving lives doesn’t just mean curing with the most advanced treatments, it starts with catching the cancer early. Advocate for yourself! No one knows your body like you do, including oncologists. You deserve to be heard and taken seriously.”