Clinical Trials

Sally

Outline: Sally was first diagnosed with breast cancer in her late 40s when her children were still young. In the months following her diagnosis, she decided to participate in a clinical trial with the help of her husband and because she trusted her provider.
Background: Sally, age 63, is a mother of two and White woman who lives in a city in the Midwest with her husband and son. Sally is a nurse and patient advocate.

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Sally was first diagnosed with invasive breast cancer after a routine mammogram in her late 40s. Learn more about Sally’s experiences with breast cancer here. Shortly after completing surgery and chemotherapy, Sally decided to participate in a clinical trial. Being a nurse and trained patient advocate, Sally thought she would be “much more involved in the decision making” but was surprised that she “couldn’t deal” with the decisions, which was “really unlike” her. Sally asked her husband to “research this clinical trial and tell me what you think.” Per her husband: “if you get A or B, that’s good, but if you get C, I don’t think we should do that.” From his research, it appeared C meant Sally would not get “one of the top three drugs that they always give women.” When they pulled the third option, Sally immediately said “OK, now we’re backing out” because she knew she could decide to do so “at any time.” Sally oncologist urged her to reconsider, feeling it was “a really good option” for her. Sally said, “what can I do but trust you?” And she did it.

 

Sally’s clinical trial experience lasted four rounds. She took two drugs at once and “hit it really hard right away” which was “intense.” Looking back, Sally remembers it as an “interesting” time especially around the decision-making. She now gets why people “can’t make any decisions” during treatment because “you can’t function” and are often “not in an emotional state” to make decisions. Sally has heard about other studies since, and thought “I could be in this study. Why don’t I know about this…?” From her experience, Sally says there’s a “huge disconnect” when it comes to helping patients find out about trials and with providers being “just too busy” she came to realize “you really need to be on top of things if you want to know about the latest.”

 

Sally says patients need to be proactive to find out about potential trials.

Sally says patients need to be proactive to find out about potential trials.

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And so I don't know how I would have gotten that information otherwise. Yeah, I really don't. Like I said, I see my oncologist once a year, and it's a pretty quick appointment, and I don't- I remember learning about a study. There's a new vaccine for women, you can be as far out as you, whatever. There's no limitations. And there's a new vaccine they're trialing here and in other sites to prevent recurrence, and I only found out about that because I worked, you know, at the Cancer Center for the past year. And I was like, “Whoa, I could be in this study. Why don't I know about this study?” I mean, there's just like this huge disconnect, and I don't know how patients are supposed to get this information. So I mentioned it. I waited until my next oncology appointment, and I mentioned it to her. But because, and she knew about it, but if I hadn't brought it up, you know, she—I think they're just too busy. And some of them are really into research. Some aren't. Some are, I don't know. But it just feels like you really have to look out for yourself unfortunately, because I- I think I have a great oncologist, but you know, you’ve—you kind of, through time, you realize, you really need to be on top of things if you want to know about the latest. And I felt, you know, I get certain emails. I'm part of different groups. But—and so I feel like I'm kind of on top of all this. But then, you know, like, “Well, no, I never heard about that. I didn't know about these new mutations. I didn't know about the vaccine recurrence.” You know, it's just like so much that's out there that you can't, I don't know how patients are supposed to get this information.

 

Sally says she couldn’t make a decision and asked her husband to help.

Sally says she couldn’t make a decision and asked her husband to help.

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I couldn't eat for three days, but then I was fine until my next round, and I did decide to go with a clinical trial. Which, you know, that was kind of interesting, too, because I really thought I would be much more involved in the decision making, but I- I really couldn't. I- I just couldn't deal with it. And so luckily, my husband, I said, “Research this clinical trial. Tell me what you think.” Because I cannot make a decision. And that's really unlike me. I was shocked that that's how I was reacting. And, so he looked it all up.

And I just look back and think of that as an interesting piece, because I just, I couldn't, I couldn’t, I now get why people just can't make any decisions. They can't function. And you feel like, “Wow,” you know, “Don't you want to participate in your care?” and it's like well, you're not in any emotional state to do it. At least I wasn't.

 

Sally says her trust in her oncologist made her stick with a decision to participate.

Sally says her trust in her oncologist made her stick with a decision to participate.

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So of course, we go in, and they pulled, you know, the third option, which is, we said, “OK, now we're backing out,” and they were like, “wait a minute.” I said, “We can back out at any time.” But then my oncologist came in, and she said that she thought it was a really good option for me, and I- I trusted her. By that point, we'd had, had enough conversations, and I just said, “What can I do, but trust you?” You know, so we did it, because she said, “You take two drugs at once. You hit it really hard right away. It's really intense. But you're done in four rounds.” And so I did it.

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