Advocating for Yourself

Because people with hereditary cancer and genetic syndromes have different needs for genetic testing, screening, and treatment compared with those without, they often find themselves having to advocate for the health care they need.  This part of the website highlights what people we interviewed said about experiences advocating for themselves.

Financial Advocacy

One of the most common advocacy activities described in our interviews was dealing with insurance companies - particularly those that are resistant to paying for the testing, screening, or treatment people with hereditary cancers or genetic syndromes require. People also told us about other forms of financial advocacy, as well. Some, like Mary, described negotiating payment plans with their doctors. Others, like Maria H. and Briana, talked about applying for grants to pay for their treatment or associated expenses.

 

Terry describes trying to get his insurer to pay for screening.

Terry describes trying to get his insurer to pay for screening.

Age at interview: 61
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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It's just calling them, and they needed as much information as they can. Why did you need this testing done? And your family history. And they needed some background in order to make their decision, “are we going to pay for it or not, or did this guy just decide to do a bunch of testing?” And once we were able to get it approved, it wasn't that big of a deal.
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And I'm not trying to say insurance companies are bad. They have reasons, they're trying to keep their costs down. But on the other hand, sometimes you wonder, really?
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But I was surprised that, for whatever reason, they fought paying for this testing. But part of it might have been the lack of knowledge. You know, the more I told them why I needed this testing done, in the long run, it saves their expenses, too, colonoscopy versus surgery, so.

 

When PSM’s doctor bills her incorrectly she notes that fighting about money is important but takes a toll.

When PSM’s doctor bills her incorrectly she notes that fighting about money is important but takes a toll.

Age at interview: 70
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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Also, the first time where--when I had the hysterectomy, with the-- I think it was the, yeah, the anesthesiologist, and, you know, sending me a bill for visits that didn't occur, and, you know, then, you know, having to fight that, you know. You’re going through this other fight. And then you’re, you know, you have to fight on another level. And, you know, it becomes very daunting, and very upsetting. And I think speaking out is very, very, very important, not necessarily just in my situation, but I think on all levels of the human experience. It's extraordinarily important to stand up, and just say, 'this isn't right. And I want to do something about it.”

Advocacy for Quality Care

People also spoke about advocacy to obtain the high-quality health care they need for their hereditary cancers or genetic conditions. As Denise said, “I deserve the best of the best.” This type of advocacy included speaking up when care fails to meet expectations, as well as pushing to get second opinions, to see providers with specific expertise, or to be treated at specialized centers.

 

Precious describes declining to be cared for by an inept nurse. 

Precious describes declining to be cared for by an inept nurse. 

Age at interview: 65
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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One time, one nurse gave me the injection in each butt. And I was-- my behind as painful for a week. And I like, I said, I don't remember-- I think I wrote her name down, because I was like, I don't want her ever to give me another needle.

 

Charlene details her fight to get care at a comprehensive cancer center. 

Charlene details her fight to get care at a comprehensive cancer center. 

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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So back to [LOCATION], because, you know, we're [comprehensive cancer center]. We're going to help you, and we're not going to stop till we find out. So it's always been specialists with [comprehensive cancer center]. Insurance has always been great, except for, well, my husband went from, I have United Health now. But before, I'm trying to think of the name of the insurance, where they did have [comprehensive cancer center]. And then, all of a sudden, a year later, they were not covering [comprehensive cancer center]. And I said, “Oh,” I just started crying. I said, “What am I going to do without [comprehensive cancer center]?” Because this is not going to happen. So my endocrinologist cancer doctor that I see for the last six years, Dr. [NAME] is wonderful. And she works with everybody on my case with HHT. I told her, and she said, “No, you are going to stay here in [LOCATION].” So she wrote this letter. And then the board at UnitedHealthcare kept it. And they said, “How can you say no to this letter?” So I got to stay at [comprehensive cancer center]. So I was like grandfathered in. So that was a good thing. So then, it switched back to UnitedHealthcare. And I have, her name is [NAME]. She's wonderful. She's a nurse that, because I have so much going on, she calls me once a week or every two weeks to see what's going on. And she sees all the medical that's gone on, and she knows that [comprehensive cancer center] rocks, and she said, you are where you need to be. So she's saying, you know, I don't think we'll ever deny you. They would not deny you from going, because you are where you need to be. And I said, well that's what I need to hear, because I will fight tooth and nail to stay at [LOCATION]. That's where all my doctors are.

The people we spoke to also advocate for themselves by insisting that care be provided in specific ways, or simply by asking that doctors pay attention when something is wrong.

 

Barry refused to leave the hospital too soon after surgery. 

Barry refused to leave the hospital too soon after surgery. 

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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When I was in the hospital, they wanted to discharge me. But I—I demanded—I said “I'm not ready to go home.”

 

Paul advocates to be seen by certain doctors and leaves those who are not a good fit.

Paul advocates to be seen by certain doctors and leaves those who are not a good fit.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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Yeah. There is I think, like with any profession, there are, I don't want to say good doctors and bad doctors, but there are are doctors who maybe are able to communicate better, and there are doctors who are more willing to bring in other people, versus doctors who think, “I can do this. I can fix this.” So I have worked-- and again, I'll leave names out-- but I have worked with doctors who I immediately did not like. And again, that's part of being your own advocate, is if you feel like the doctor, or the people they work with, or the facility is not for you, then you just have to cut it off and leave. And I think people have this idea that the doctor always knows better than you. And that's not always the case. You know yourself. You know what's the best for you. So I did see a doctor who diagnosed the stomach issue. And he was a good doctor in some ways, but I had decided that there were various things about his practice that didn't work for me. So I ended up leaving and going to see another group of doctors who specialize in genetic bowel cancers. And that seemed like a pretty good fit for me.

 

Mary talks about the need to be assertive with providers in some circumstances.

Mary talks about the need to be assertive with providers in some circumstances.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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And getting diagnosed very early helps a lot, and just being aware of symptoms, and being your own advocate, because most of the time my doctors have been wonderful. But they haven't always been. And I sometimes have needed to put more pressure on them if I have thought certain symptoms needed to be looked at carefully.

 

Cynthia recognizes when something is wrong and pushes her providers to pay attention.

Cynthia recognizes when something is wrong and pushes her providers to pay attention.

Age at interview: 50
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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And it's so important to do that, to just be proactive about your health care...You just, you got to think about it. Could it be something else? And, you know, when he's saying “everything looks good, you look good in terms of recovery, it doesn't look like you have any infections, you don't have anything going on,” then you got to start saying, “OK, well, then what can it be?” And you have to help work with your doctor to figure it out.

Advocating for Care or Managing Care?

Many of the people we spoke with described how advocating for care often blended into a broader task: that of managing their own care so it meets their needs.  For Kerry, managing her care means keeping track of her screening schedule rather than relying on her providers to do it. For Heather, it means “staying on top of insurance,” which she calls “the most challenging thing mentally for me that I’ve ever come across.” For Steve K., it means facilitating communication between hospital-based providers, now that “the days when your primary care doctor is directing your care are pretty much gone.” For Thomas, it means getting out of his sick bed to quiet a disruptive individual who is disturbing an entire ward of cancer patients.

Many of the people we spoke to have developed a great deal of expertise about their own conditions.  This reality, combined with the fact that these conditions are somewhat rare and knowledge about them continues to evolve, resulted in patients sometimes having to draw on their direct experience to teach the providers who care for them.  Others learned the language clinicians use and the systems they work in so they could ask specific, informed questions and contribute to the quality of their own care.

 

Joan is so well informed, she says people often ask her if she is a medical professional.

Joan is so well informed, she says people often ask her if she is a medical professional.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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It was interesting, because one of my physicians said that Lynch patients tend to be very educated about Lynch syndrome, because you have to be. So we tend to be a population that's really on top of  what we need to do, and how we need to be observed. And in most cases,  hopefully, it's caught before it gets too aggressive. That doesn't always follow, that doesn't necessarily follow the pattern but.
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We look at mamos, or tests, or whatever it is, and there's some kind of a dot there, then I'll say, "well, how do you know? Tell me why you know it's not cancer and it's a benign something or other, how does it present itself?” So one becomes very educated in understanding not only the language, but also the images. And I think the more well-versed one is, and the more you understand the language-- I frequently have people ask me if I’m a physician or a nurse. Because I know the language. I know how to work the system.  I know how to get what I need to get for my family and myself. And that's really, really important. I can't stress that enough. You cannot take anything at face value. And you really have to be your own advocate.

 

Paul’s self-advocacy includes educating doctors about his FAP mutation

Paul’s self-advocacy includes educating doctors about his FAP mutation

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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And that's also another reason for having to be your own your own advocate, is that there's not a lot of information available for my condition. Because few enough people are affected by it, but then even fewer people also develop stomach issues. So there's much less information about that. So yeah, and even-—you and I talked about earlier—even speaking to medical professionals, when I explain to them what I have and what I've had done, they're usually kind of taken aback.
Yeah.
So I even have to sort of-- I've had the walk doctors and nurses through it a little bit.

Becoming an Advocate

The men and women we interviewed explained that being one’s own advocate requires knowledge and skill.  Most people said they did not start out with the tools they needed to advocate for themselves, but rather acquired them along the way. Jack noted that knowledge comes with effort so “...you’ll need to do some of your own research.” Precious and Briana learned from the women in their support groups. Irina read scientific papers. A number of people told us they have learned by making mistakes. For example, Mary learned the importance of getting a second opinion when the first doctor she saw missed her diagnosis.

In addition, many of the people we interviewed were clear that effective self-advocacy often depends on what Heather described as “resources and some support.” The money and time that come with economic privilege make it easier to educate oneself, and to get access to good insurance that enables one to choose a provider or a hospital.

 

Asante says being informed is part of the patient’s job.

Asante says being informed is part of the patient’s job.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I think, you know, 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.

 

Briana describes learning not just to accept a doctor’s authority.

Briana describes learning not just to accept a doctor’s authority.

Age at interview: 28
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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Yeah, I think that health care providers do send the wrong message sometimes based on their experiences. Because there was, before I went to the conference, I went in in the frame of mind thinking, “I won't be able to have a flap surgery. I'm going to have to settle for implants, even though this is something that significantly scares me, because I think there's still a higher risk associated with it.” And this person that I am supposed to be entrusting with my health, and my life, and my longevity is telling me no, you can't do something. I think it's very natural to just believe them, and want to believe them, and want to trust them. And so when I was able to do more research and get different opinions, it kind of makes that health care provider seem less trustworthy. And I understand that that's based on, on her experience and the, like her background. But I--
Her comfort level, too.
Yeah, her comfort level, and just the experiences that she's seen her patients go through. But I think that that proves a point, that maybe doctors need to be more well-rounded, too. Because there's lots of different experiences out there. 

 

Kim talks about how she learned by asking questions.

Kim talks about how she learned by asking questions.

Age at interview: 55
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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As far as advocacy, I talked to-- I was my advocate. I went with a folder. I did write down notes every night when I came home. I asked questions. I wrote my questions down so I did not forget what questions to ask. As a matter of fact, at the end, I remember not even having to ask them if I could ask them questions. You know, they'd turn around and say go, and I'd write down. Because I was mindful of their time too-- I asked questions but was mindful that these folks had a lot to do. So I would just go down, and even if they answered something that I wasn't sure of or had wanted to have a conversation about, I would get my answer, go home, and then write it down and come back. I was always very mindful of their time, but also needed answers as well.

 

Susan describes learning what language to use.

Susan describes learning what language to use.

Age at interview: 71
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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And finally, I got in to see this person. And then I learned the word to use was lesion. And so I then made some subsequent follow-up calls saying I have a lesion, and I got in right away. So I didn't have the vocabulary for what triggers the process. So what I have learned is that when a person calls about a medical problem, it's important to ask to speak to the triage nurse. Because simply asking for an appointment does not necessarily give one the [um] timing and the right physician at the appropriate time. So I would say to anyone who thinks she has Lynch syndrome, should probably say I need to talk to the triage nurse, probably of just one's internist.

Developing self-confidence is another crucial step in becoming an advocate. As Denise puts it, being an advocate means knowing “I’m in charge of me.”

 

Mea explains the importance to self-advocacy with being aware of and comfortable with one’s body.

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Mea explains the importance to self-advocacy with being aware of and comfortable with one’s body.

Age at interview: 39
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: A polyposis syndrome
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I am really in tune with my body. So it's kind of like, I know what my body needs. I have to listen to my body and be in tune with my body. Because I don't want anything to go wrong. You know, I'm not ashamed of talking about it, or that I make a lot of bowel movements, or, that I have to have surgery there...I mean, I think it should be addressed. You know? You have to talk about it. You can't just have body parts and be embarrassed about them, or let's not talk about them, or they're not important. You know, everything you have in your body is important. So it should be addressed.

 

Susan talks about the challenge of self-advocacy for women.

Susan talks about the challenge of self-advocacy for women.

Age at interview: 71
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I think that [um] a lot of women are still a little reluctant or they haven't quite caught on that there are decisions they can take that they, they can take on their own behalf. And they don't need anybody's permission for it. So money, having one’s own resources, having control of resources, gender, are all very much interconnected.

Partners in Advocacy

In the stories of self-advocacy that we heard, many people described relying on others, such as family members, close friends, or health care providers, to be their allies. Terry noted that it was his wife whose tenacity in dealing with their insurance company was key to getting coverage for his testing. Peggy explained that she insisted on seeing a specific provider only because her mother was adamant she needed to “push” for this doctor. Paul said his wife has been by his side throughout his illness and has been invaluable as an advocacy partner.

 

Kerry says her partner is a fierce advocate on her behalf.

Kerry says her partner is a fierce advocate on her behalf.

Age at interview: 36
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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She had that urgency probably more so than I did. And it was, “You need to get in there.” I felt something? “You need to get in there. You know, there's no waiting on this.” And then there's the doctor saying, “It's probably this. You're young. You're healthy. You don't have any family history” that I knew of. So, to them, it was, you know, “You're young. You're fine. Whatever, just wait.” To her, it was “I've been through this. We're not waiting.” And then there was a point where she even got into a fight with the nurse navigator from [LOCATION] because she said, “Well why can't you do a biopsy of the lymph nodes, or remove them surgically to find out what's going on?” And she said, “We don't do that typically.”

From Self-Advocacy to Societal Advocacy

For many of the people we interviewed, experiences with self-advocacy led to a commitment to advocate for others who are also living with hereditary cancer or genetic syndromes. As Desiree said, “one of the biggest outcomes of my journey” has been using direct experience “to be able to advocate for others…or just encourage other people on how to advocate for themselves.” Visit our summary on advocating for others to learn more about how people we interviewed built on self-advocacy to become advocates for others.