Camille Lewis

From Reluctant Participant to Clinical Trial Advocate

Camille Lewis had every reason not to join a clinical trial

Author: Anita Brazill 

She will live to celebrate a milestone birthday this summer. About four years ago, the likelihood of reaching age 50 felt uncertain to Camille Lewis. On a bright spring day, heading into Mother’s Day weekend and a baseball tournament with her younger son Mateo, Camille Lewis was informed by phone, while at work, that she had Breast Cancer. The tumor was malignant and aggressive. Treatment needed to begin immediately to improve her odds of survival. She was stunned and that evening lay sleepless and alone in her bed.

Just a few days later, in a consultation with what Camille now calls her “breast cancer dream team,” she was taken methodically through all that needed to be done in hopes of arresting what she visualized as a slender but wild dandelion weed coursing through her otherwise strong body. Also on that day, as a complicated treatment plan was outlined for her at the Denver breast cancer center, she recalls, right there and then, she was asked to participate in a clinical trial. “Do I have to?” she asked.

The oncologist told Camille that she did not have to participate. But she also believed Camille’s participation in the trial could complement the treatment plan they had just laid out. The team believed she met the criteria for enrollment. That trial, referred to as the I-SPY 2 trial, was going to evaluate clinical opportunities to improve outcomes in high-risk breast cancer patients. It would evaluate new treatments that had potential to shrink the type of tumor that was in her breast, increase chances of survival, and perhaps have fewer side effects than other established treatments.

Still, Camille was not liking the idea. “All I wanted was to get going with my treatment plan,” she says. “The complicated packet of information I was given, which described the trial, looked like a lot of work to go through. I was already overwhelmed and apprehensive.”

Her thoughts were running in many directions; the cancer, the logistics of treatment, money, time off work for treatment, transportation, her mortality, her children. A single parent who had only recently lost her own mother, Camille had practical matters to address in a hurry. She did not believe she could also be available to be in a clinical trial program nor manage the obligations that might come with it. She was unsure she had a support network to do so, even if she would participate, and she had no acquaintance with anyone from her world that had ever been a patient in a clinical trial.

Despite those very reasonable objections, and even with time and resource constraints in her life, Camille told herself she should be open-minded. “If I said NO in that moment when I was asked, I would not have known what I was rejecting,” she said. I needed to educate myself – but reading that huge clinical trial packet wasn’t the best way for me to learn.”  She told her oncologist she would think about it and get back to her soon.

Another Opinion Needed

“I reached out to one of the parents on my son Mateo’s baseball team, an OB/GYN physician. “I knew her through the team, so I wanted to hear what she had to say. After that, I also had another separate talk with a member of my new breast cancer care team, who broke down clinical trial participation in everyday language.”  Those two conversations, combined with prayers, brought her to a decision to raise her hand to participate.

Camille says she began to understand that joining a clinical trial meant she would get not only the current and best “standard of care” treatment, but that she would be provided extra clinical attention, including more diagnostics and imaging. Those tests could provide additional insight to her care team as she progressed through treatment. “I decided I had to take every opportunity to save my own life.”

Now, a few months from her 50^th birthday, and with her treatment and the clinical trial in the background, Camille is back with new vigor and a lot of verve. Enthusiastic, engaging and endearing, she says, “My paradigm shifted. I learned a lot and I am glad I did. I want to educate other women like me to open themselves up to the possibility of enrolling in clinical trials.”

She pauses, “Let me put it another way; there are many ways to impact and create change in breast cancer care, inequality, and injustice. Tigerlily advocates undeniably have something to offer by being part of important changes. Ignorance will kill us if we refuse to participate in clinical trials.

Research is Formalized Curiosity

“Yes, we have been overlooked historically; yes, there are real reasons to be skeptical; but I know that nothing changes if nothing changes.” She remembered that quote from the spiritual leader Mahatma Gandhi: Be the change you wish to see in the world. And she couples it with another quote by one of her favorite authors, Zora Neale Hurston, who says, Research is formalized curiosity. It is poking and prying with a purpose.

Camille quickly knit herself into the vibrant breast cancer community of survivors and thrivers. Like individual squares in a comforting bed quilt, she is one unique piece of a big and diverse tapestry. It was through her own curiosity that Camille found Tigerlily Foundation. Her cancer care team had advised her to be cautious about online searches for information on breast cancer, knowing it could create additional fears if the information found was not from vetted sources. “What caught my eye was the word tiger,” says Camille. “It’s not what you expect to see when searching breast cancer topics, but it reminded me of the movie Rocky. I related to that movie and to the song, “Eye of the Tiger.” Accidental as that imagery was, Tigerlily Foundation went on to make such a big difference in my life.”