Seeking Information
The people we interviewed had a lot to say about information and information seeking during their breast cancer experiences. As Linda told us, “Knowledge was power for me.” She, and many others, emphasized the need to understand breast cancer and the details of available treatment choices to support “informed decision-making.” However, people also cautioned that the search for information could sometimes turn up scary or potentially misleading stories. People we interviewed who live in rural areas needed to do a lot of research on their own, because they don’t have easy access to multiple clinicians. They also had more difficulty getting information via second opinions.
Asante has an incredible relationship with her provider and nurse navigator but described the importance of doing research to stay informed.
Asante has an incredible relationship with her provider and nurse navigator but described the importance of doing research to stay informed.
Like, I have my doctor's cell phone, for instance. You know, would I call him in the middle of the night? No, I would not do that. But, you know, if I needed something I could text. And I think that that's the new way of treating people now. Doctors are being more relatable and more reachable, and more down to Earth.
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I think as a patient you have to do your research, too. You have to be informed so that when you do go to the doctor and they're telling you something that you don't understand, you have to do your own homework.
Yeah.
It's as much their job as it is your job to be informed and to educate yourself. And I think the only way you can do that is not by Google searches because that will terrify you. I've done that. I've been there. But just really talking to people in the industry, talking to survivors. You know, talking to nurses. Nurses definitely know their stuff, especially oncology nurses. And if you have a nurse navigator – I don't know if a lot of hospitals have a navigator. A person who, a point person who is going to lay out all of your treatment. But really, talking to each other about it. Is-, I felt that that's been the most helpful in seeking out people and seeking out organizations that are on your side, on your team.
Janet B. describes having limited access to doctors because of where she lives, and the research she did on her own.
Janet B. describes having limited access to doctors because of where she lives, and the research she did on her own.
Because they, where we live, sometimes you have to go an hour either north or south to get help with other doctors that may not be, because we have a limited number of doctors here in our town. There may be only one of one kind. And then there's more than one of the other kind.
Alice values the information she gets through second opinions.
Alice values the information she gets through second opinions.
What I’ve discovered with all of this is that sometimes they're doing it because it's easier for them. And you really have to be careful of that and ask for what you want. And say, “This works better for me.” But, of course, at the time, you're scared. And you don't know. And you’d like to trust that they know what they're doing. But there's a lot to be said for second opinions.
Across the United States, not everyone may have equal access to necessary information. See our links to reliable sources of information about breast cancer and summary on Advocating for Yourself
Some people we interviewed said they needed help with information about the financial aspects of having cancer. Several noted the psychological value of learning about others’ experiences in order to know what to expect in their own futures. As Janice explained, “if you don’t do your research, you’re constantly stunned, shocked.”
Different Sources of Information
One source of information used by a lot of people we interviewed was doctors and other clinicians, who give information both by speaking to their patients and by sharing written materials. Another source is the latest science about breast cancer, which people found either by calling experts, as Janet B. did with her patient advocate and providers outside of her care team, or by reading the research themselves. Debbie did her own research and learned about experiences a friend had had with their cancer, but in the end decided her clinician was the most reliable source of information. Steven’s son happened to be an oncology fellow at the time of Steven’s diagnosis, so he had his “own in-house expert” in addition to his clinicians.
Members of Precious’ treatment team provide good information.
Members of Precious’ treatment team provide good information.
I did not have a lot of knowledge about metastatic breast cancer. And I did not learn a lot until I went to, you know, my oncologist, who's excellent. And you know they gave me, basically, a whole team of people to help me. And they showered me with financial resources because you know applying for disability, I needed help you know with all of these things. And so, they gave me resources about that.
Janice describes "driving [my treatment] decisions mainly with my research."
Janice describes "driving [my treatment] decisions mainly with my research."
So, fast forward, that's when I found out that it was DCIS 0. So, I thought, “Oh, well, if it's 0,” I went back to the research and I looked it all up. I said, “Oh, well, then that's like, that means that it has not, it's been contained in the ducts and it hasn't gone outside of the ducts.” And so, I felt that I really had dodged a big bullet because the—what I had could only be read on the mammogram. But if I had decided, oh, I'll just miss this year, who knows what could have happened? So, you know, technology is pretty good with that. But what happened was the decision was to me, well, now with this, we suggest that you have radiation and take these hormonal drugs for five years. And I thought this is insane. What? So, I went off to do more research. And I was very, very anxious, you know. Really, really anxious about that. I'm, like, well if it's contained, then why do I have to go do all of this stuff? And so, I was really pushing back.
The internet was also frequently described as a source of information. Many people used Google to search for answers to their questions. Alison accessed PubMed®, an online database of articles from medical journals, to locate pertinent material. Lisa S. used “UpToDate®… a web page that gives [doctors] the best information about things that they don’t know about.” For many, friends or family members who had had breast cancer, formal support groups and online support groups and sites like Facebook provided access to the first-hand experiences of others with breast cancer. People also pointed out that information based on the experiences of other individuals could be, as Chelsea put it, “a double-edged sword,” because each story is based on the story teller’s specific circumstances such as what kind of cancer they have, how long ago the diagnosis came, and how healthy they were before cancer.
Peggy speaks to her aunt.
Peggy speaks to her aunt.
And I talk to my aunt a lot, too, after that, because she went through the same thing as I am. So, I asked her questions and she gave me advice. So.
Was it helpful?
It was. Whether or not I followed it all, probably not. But, yeah, she told me what to ask, you know, and what to look out for, side effects. You know, what helped her.
Chelsea found both good and bad while participating in a Facebook breast cancer support group.
Chelsea found both good and bad while participating in a Facebook breast cancer support group.
Yeah. So, I guess in that aspect, it was a little bit of a double-edged sword because I got a lot of information about people's experience with the different types of implant methods, or even just reconstruction in general. You know, I got to read a lot of different people's point of view. And it is, I won't say it's what made me make one decision or the other, but it definitely informed me when I did make that decision. But at the same time, people were also asking questions about, you know, the tamoxifen, or Lupron and Aromasin, and how people in this Facebook group were handling it. And you did have a lot of people come out and say, "This was really difficult for me. I have terrible joint pain," you know, "and vaginal dryness," and all of those types of side effects. So, reading all of those things definitely made me cautious. So, I mean, it's sort of just, you had to weigh everything, I guess, that you were reading in these groups.
The Problems with Information
People told us that information about breast cancer can be confusing and overwhelming, particularly right after diagnosis. Ginny spoke of being given “reams of paper” about chemotherapy drugs, and Casey said, “there’s too much information out there. There’s too much.”
Alison recognizes how fear makes it difficult to process information.
Alison recognizes how fear makes it difficult to process information.
But anyway, at the time, the problem is that you go to the place of cold fear. And I've been there before for various things. And I recognized it. And I was sort of, because I do education for patients in another health area, I just was sort of observing myself going through this. I'm like, I am in the place of cold fear now. And things have happened, like apparently, I had a packet of information they had given me. And I looked at the tech and I'm like, “what packet?” I had just zero recollection of even having received it. And I look in my bag and damn it, there is the big white envelope. No recollection at all, just zero. Because when we are in fight or flight mode and adrenaline is pumping. We are incapable of learning and I knew that.
Some people explained that the information they received was “too technical” to be easily understood. Others described the frustration of finding contradictory information. June said, “sometimes, you read something. And one person is writing this section. One person is writing this section. And they’re both counteracting each other. It doesn’t make sense.”
Although many people relied on the internet as a major source of information, several people said that this was a risky proposition. As Amber said, “Google can be your best friend and your worst enemy.” Linda noted that she had received the “really excellent advice” not to “get on the internet and search around… Because what happens in that situation is you take things out of context.”
Sharon talks about what happened when she went online right after her diagnosis.
Sharon talks about what happened when she went online right after her diagnosis.
Well, my initial diagnosis I had a couple of days to mold around without any kind of appointments yet made. So, I did do some googling. It was scary some of the stuff that you would find out there. And I can only do so much before I was done, and I had to stop reading because you're going to hear the horror stories. And you're going to hear all of that stuff, and I needed more positivity.
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And like I said, after a while, I was saturated. And I had all the information that I could absorb at that time.
Strategies for Dealing with Information
People told us some ways they had learned to deal with the problems associated with information and information seeking. For example, Becky explained that she avoids Googling because there is “too much misinformation, too much emotion, too much worry tied with it.” June said she keeps seeking information, but warned that people should “...believe half of what you hear and half of what you see.” Here are some of the other strategies we heard:
Debbie relied on doctor recommendations to find reliable sources online.
Debbie relied on doctor recommendations to find reliable sources online.
A lot of it, I would discuss it with my oncologist and say, “What is really true?” Although, he gave me websites to choose. And there's a lot of really good websites out there. You don't want to go to something that's not reputable. But there's places like cancer.org. I can't think of the other ones right now, but there's a few other ones that are reputable. And you just kind of have to weigh everything. “Does this sound reasonable?” There are so many things out there that are available now that, that there weren't. And they're constantly making improvements.
Sally described some characteristics of “good” websites.
Sally described some characteristics of “good” websites.
I guess, I like to be on sites where there is like a university affiliated with it, or at least someone, I mean, these open chat rooms, that's where you get into trouble. And people just are posting stuff that's like, “That's not true.” You know and, and you don't know if there's any validity to what people are saying. So I like it where there's a, a moderator, is that what they're called? Who kind of checks in and makes sure everything is good or you know, just from reputable sources, which are usually affiliated with the university or a hospital.
Linda’s husband is her partner in information seeking.
Linda’s husband is her partner in information seeking.
[NAME] became a co-survivor. I didn't know it was called that at the time, but he took on that role so easily and so readily. And he was good at it. I told you he was an electrical engineer and he was a researcher, and he would be at the doctor's office. And the doctor started to talk about nipple saving surgery, and my husband said, would say, “I read about that.” You know? And I’m like, you know, “You did?” And here's why it's important to have a significant other, a husband, a co-survivor, someone with you at all times. And I'm just going to give you a little scenario. Doctors are firing away and they're talking to you, and they want you to take your pink vest, paper vest, and they want to look and see what's going on here. They are looking at your breasts. You're looking at your breasts, at your implants. The doctor's talking. He's pointing and you're trying to figure out what he's saying, and you miss a lot of it. And we would get back in the car and [NAME] would say, “Well [NAME] said, duh, duh, duh duh, duh.” And I went, “He did?” He goes, “Yeah.” [NAME] heard for me all the things that I missed, and he would write them down and we would formulate questions together. And he was with me every step of the way. He took me to every doctor's appointment.
Different People have Different Information Needs
The people we interviewed expressed different wishes for information and information seeking. Some wanted to know everything, others only what seemed absolutely necessary. Some relied on single sources, others sought out information from a variety of sources. Some preferred to do only very targeted research, while others Googled widely.
Janet B. preferred to have a lot of information.
Janet B. preferred to have a lot of information.
You have to make a lot of phone calls, a lot of phone calls. You have to do the research if you've got a computer. If you get on your phone nowadays and look up information on any kind of cancer things. Do, do a lot of research. Get, get on there and, and look up each side and to see what it says. Some sites are, are just, you know, basic information. And there's other sites that are a little more detailed. And then if there's a phone number on there, call those people up and ask them, you know, “What does this mean?” Or, “What does that mean?” And try to get the information.
Ronnie was satisfied with less information.
Ronnie was satisfied with less information.
Well, I think my oncologist gave some information. Like yeah, I got a folder with some information from [INSTITUTION] on breast cancer. And then I think I limited myself to a couple two or three credible websites. I didn't dig deeply into it. I got some facts. And when I felt like it was enough to know, I stopped myself from reading more.