I’ve Been in 4 Clinical Trials for Breast Cancer: This Is What You Should Know

Even if I receive a placebo, I know I’m helping to advance science. This is what my clinical trial experience has been like.

When you have cancer, access to excellent healthcare becomes invaluable. Along with standard treatment, clinical trials are available for people with breast cancer at any stage.

I first received a diagnosis of stage 3 breast cancer 7 years ago, and I decided to take advantage of several clinical trials that my doctors suggested.

Join the free BC community!

Connect with thousands of members and find support through daily live chats, curated resources, and one-to-one messaging.

Sign up

My clinical trial experience

The first trial I joined was researching whether the drug everolimus could prevent cancer recurrence when taken with anastrozole, a hormone therapy drug I was already prescribed.

I took a pill every day for a year. Because I had no side effects, I’m convinced I received the placebo pill. But it made no difference to me, and I know I helped advance science.

At the same time, I joined a 2-year weight loss trial called the Breast Cancer Weight Loss (BWEL) trial. The study involved weekly phone calls with a Harvard-trained dietitian. I was instructed to record everything I ate, track my steps with a Fitbit, and read a book.

I lost weight but not the study’s goal amount of 10% of my body weight, and I gained it back. Results from the BWEL trial are now coming out.

I also participated in a 6-month online study using a platform called OncoTool from Northwestern University. The study involved answering questions about my lifestyle every few weeks online, and I received a $100 gift card for participating.

How I’m making every day count

I’m currently in a 12-month clinical trial called Every Day Counts (EDC), which is researching how lifestyle changes affect quality of life for women with metastatic breast cancer (MBC).

The study involves plant-based eating and incorporating safe exercises for women with MBC to increase physical activity and strength. The study aims to improve participants’ lifestyle habits and organizational skills.

EDC is the best clinical trial I’ve joined to date. I meet with a personal trainer weekly, either in person or over the phone. I do weight bearing exercises with resistance bands and loosely track what I eat, with the goal of eating more fruits and veggies and less meat. I also take cooking classes on plant-based eating.

My sister found the study for me on ClinicalTrials.gov, the government website where you can find information about any ongoing clinical trial. The doctors listed under each trial will actually take the time to talk with you if you call them with questions, especially if they’re actively recruiting participants.

“The EDC lifestyle intervention pilot study (a 12-week study involving 35 women with metastatic breast cancer) showed significant increases in physical activity in the women who had the behavioral intervention involving a tailor-made exercise program and nutritional advice,” said Dr. Paula O’Connor, one of the project managers for EDC.

My improved diet has been the best part of the study for me, because I already had a general routine for exercising.

The importance of clinical trials

“Clinical trials are critically important to help advance patient care,” said Dr. Patricia Sheean, associate professor at the Parkinson School of Health Sciences and Public Health at Loyola University Chicago. Sheean has been a lead researcher for many clinical trials.

“Trial results help medical professionals better understand medical conditions and patient perspectives and to advance treatments to improve outcomes for all patients,” Sheean said.

Sheean mentioned recent COVID-19 vaccine trials, which helped rapidly develop treatments and vaccinations to end the public health emergency: “Thanks to clinical trials, scientific knowledge, and human bravery, society benefited.”

Sheean has partnered with other researchers to conduct clinical trials on cancer survivors in historically marginalized groups. Sheean worked on a 2017 weight loss trial with African American breast cancer survivors across eight Chicago neighborhoods, as well as a lifestyle intervention study of Hispanic female cancer survivors during COVID-19 lockdowns.

Sheean added that it’s important to remember that trial participants will never receive “suboptimal treatments.” Participants will receive the current standard of care or better. Doctors are not allowed to withhold a treatment they know is effective, only to test one that may be better.

“For example, if chemotherapy A works to treat a patient’s cancer,” Sheean explained, “the clinical trial may go on to randomize patients to receive chemotherapy A or chemotherapy A + B. Patients are not allowed to receive a placebo or fake treatment in this scenario. The trial would be testing to see if adding chemotherapy B improves clinical care.”

Failed trials are essential too

Not all clinical trials work. Two years ago, I found out I had a recurrence with small bone metastases. I searched for a clinical trial that could treat me with a revolutionary radiation treatment called ablation, where radiologists target just a few spots or lesions in the bones.

I visited Dr. Steven Chmura at UChicago Medicine, who spearheaded a study on select ablative radiation for women with MBC. Unfortunately, Chmura explained to me that the trial was unsuccessful and that they didn’t find the positive results they were hoping for.

The trial ended and did not move on to phase 3. But from the trial, the researchers learned that drugs taken for systemic treatment — such as Ibrance, Verzenio, and Kisqali — are more effective than ablative radiation. We wouldn’t know that without the clinical trial.

“Clinical trials are the main way that doctors find better treatments for patients with cancer,” O’Connor said. And the trials are not just for those “at the end of their rope.”

Anyone willing to participate in a clinical trial can benefit, at any stage of cancer. And at the same time, they can help pay it forward for future generations.