Clinical Trials

Lisa J

Outline: Lisa J. was diagnosed with DCIS breast cancer in her 50s, several years after testing positive for a BRCA gene mutation. Lisa was interested in participating in a clinical trial but couldn’t find one she was eligible for because of her co-conditions.
Background: Lisa J., 54, is an African American woman who works as a breast cancer advocate. She is a Nichiren Shōshū Buddhist and lives alone in a large urban area in the East.

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Lisa J’s mother passed away from breast cancer when Lisa was young, so she underwent genetic testing in her 30s and found out she had a mutation on her BRCA gene. Years later, in her 50s, Lisa started experiencing atypical symptoms and was diagnosed with several conditions, including ductal carcinoma in situ (DCIS) breast cancer. Learn more about Lisa’s experiences with breast cancer and cancer risk that runs in families. Lisa was interested in participating in a clinical trial, however her co-conditions, including lupus, arthritis, fibromyalgia, and thyroid nodules, meant she was not “an ideal candidate.” Lisa works as an advocate for breast cancer survivors within her community. When she meets researchers at conferences, she asks, “who’s your perfect patient” and “where do you find the unicorn?” when actively recruiting “particularly people of color…where they may or may not be a higher rate of co-condition issues.” In Lisa’s experience, “as soon as you hear lupus or this or that, I’m out.” Despite wanting to help, Lisa “just can’t to this point”

In her experience as a survivor Lisa has sat “as a reviewer in clinical trials” specifically looking at “researchers’ proposals” because they are often seeking patient and advocate input. Lisa has found this work to be “incredibly fascinating” and she “hope[s] to do more of it.” Though she hasn’t participated in one herself, Lisa has seen how clinical trials have helped others in her community, which is “how they have they’re extended their life.”

 

Lisa J. says she isn’t eligible for most clinical trials because of her other health conditions.

Lisa J. says she isn’t eligible for most clinical trials because of her other health conditions.

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Here’s the dirty, little caveat—because I am a breast cancer patient, but I have my co-conditions. So it doesn't make me an ideal candidate, which is a question at every researcher- focused meeting and conference I go to, I'm like, “who's your perfect patient? Somebody's got something else. Where do you find the unicorn?” You know, if you're looking to actively recruit particularly people of color and you have—where there may or may not be a higher rate of co-condition issues, because once you hit a certain age group, then you have that. And you know better than I as a researcher, it's who's your unicorn, perfect patient? It's not me. As soon as you hear lupus or this or that, I'm out. OK. I'm moving along. But, you know, you keep throwing out the line.

So that's- that's the thing. And yeah. It’s—I just don't understand. You know, I mean, I do, because it's been explained a number of times. But that's the criteria. So it’s not that I—I do have certain things that I may not want to do in terms of my medical treatment or interrupt certain aspects or add certain, you know, clinical trial in terms of medication because of the lupus. And that’s—there's not enough information, at least for me, with my co-conditions. But that doesn't take away from other things I wouldn't mind doing. And I just can't to this point.

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