Allanda Christenson wants to share just how important the power of advocacy – especially self-advocacy – can be.
Author: Katherine Cornish
Allanda starts off by sharing about her initial breast cancer experience. “I was diagnosed in August of 2021 with hormone-positive, HER2-negative breast cancer. I did all of the standard treatments but I was not informed about any clinical trials,” she says. “It was because of Tigerlily and other survivor groups that I even learned that clinical trials were an option for me…. I’m so grateful that I am a part of this community and that I got connected with these organizations to get this knowledge because I wouldn’t have otherwise.” While she had an excellent care team at Fred Hutchinson Cancer Center, she didn’t get any input when she had asked about clinical trial participation opportunities. Not one to wait for someone else to decide whether or not to share information, Allanda took charge. “I actually went searching for trials on my own,” she shares, “and I continue to.” Her search led her to the Eileen McGeever Breast Cancer Survivorship Program at University of Southern California’s Norris Comprehensive Cancer Center.
“It was because of Tigerlily and other survivor groups that I even learned that clinical trials were an option for me…”
While we often think about clinical trials as a way to compare whether a potential new treatment is as good or better than other current treatments, there are a lot of other types of clinical trials available. The trial that Allanda is participating in is an observational study in which participants contribute to breast cancer research by sharing information about their experience as a cancer survivor and by providing occasional blood samples at a nearby laboratory location. The participant data that is gathered will help researchers understand the impact of stress, behavior, social factors, and diet on recurrence, and tracking and treating minimal residual disease. Participants can be located all over the U.S. and receive all of their materials by mail, which makes it an easy process. This study remains ongoing with a goal to enroll 1,000 women who have completed breast cancer treatment; for more information on participation, click here.
Allanda highlights the importance of a strong and approachable study team, even in an observational trial like this one. “The study coordinators get you all set up with the paperwork…. The information was pretty clear about how you qualify, what you’re going to be doing, your rights, if they find something, everything you need to know. And if you have questions, there’s somebody that you can reach out to,” Allanda notes. As she shares, the study team is there to be a helpful resource throughout the whole study. Participants are encouraged to ask questions at any point, not just at the beginning when the study is being discussed for the first time. “The study coordinators, they’re there for you every step of the way for any questions or concerns. There’s a lot of educational material that you can talk about with the coordinator so you’ll understand your part.”
When asked about what kind of insights she would share with other advocates, Allanda encourages others to get engaged and be an active participant in their healthcare decisions and to consider clinical trial participation. “We cannot make progress in the breast cancer realm or any other disease without research, without science, without people willing to say, ‘you know what? I’m in this fight.’” As a strong proponent for making sure that future generations have the benefits of more precise treatment options, she further remarks, “I just want to encourage everyone out there to get involved for the sake of everyone coming after us…. Let’s move the needle, and we can’t do that without participating in science and research.”
Engagement and education to drive understanding of all of one’s healthcare options shouldn’t just be propelled on the patient side though; it should come from all areas of the healthcare team and healthcare system. Allanda highlights the importance of an established support network within the care team: “A patient should be assigned a patient navigator or a social worker, someone that the patient can build a relationship with. Someone that can help guide patients and their families from A to Z.” Putting the ‘care’ in the healthcare team is important, she observes. “I did most of my journey myself. My family works, my mom still works. I don’t have children or a spouse,” shares Allanda. Going through major health conditions and treatment decisions is always easier with a strong support network that can help act as a sounding board while thinking through the options and to provide any information that might be needed to fill in educational gaps.
“I think more outreach, more education,” is the key to driving awareness, Allanda explains, “we need everybody up in this thing. Like what Tigerlily is doing, but even more organizations. Different organizations can let different people see themselves [in clinical research].” Allanda continues to talk about getting the message out and hopes to get digital and audio personalities on board: “I would love to see Black media, Black podcasters focus on important things like clinical trials and prostate health and voting,” she starts. “It’s going to take a lot of different kinds of approaches to start moving the needle. Get the message out there.”
Allanda calls out the statistics around breast cancer as an impetus for change. “Black women are more likely to have aggressive and advanced stage breast cancer, and black women have the highest mortality rate of any U.S. racial or ethnic group. We have to improve these numbers, and the only way we can do that is to increase clinical trial participation and advocate for research funding.” She encourages everyone to put aside their perceptions and fears and to get involved in advocacy. “I was thinking well, I don’t have any special skills or training and my public speaking isn’t perfect. You know, those seeds of doubt that can be there? But just come as you are. Share your story. You can be your own advocate.”
