Talking with Professionals

People whose elevated cancer risk is identified through testing tend to be in more frequent contact with doctors and other medical professionals than would otherwise be true.  Conversations that take place during their visits with professionals can have a significant impact on both the actions people take and on their feelings about living with risk. This part of the website explores what the people we interviewed said about those interactions. You can also visit sections of the website that summarize what people said about getting a diagnosis and about their decisions regarding treatments.

First Conversations about Cancer Risk

Most people we interviewed described being overwhelmed during their early discussions with clinicians about cancer risk.  As a result, for many it was hard to, as Terry put it, “comprehend everything you hear, especially the first time.”  Ginny said it was “overwhelming to take it all in.” JanLynn described having to answer “all these questions… of my personal history, which I don’t readily share,” and then not being able to “recall anything else” from those early conversations about her Lynch syndrome because “everything moves so quickly, that you really have no time to process.” Several people noted that even though medical professionals asked them if they had questions, they were too confused and upset to know what their questions were.

 

Thomas says he couldn’t hear what the doctors were saying at first because his world was crashing.

Thomas says he couldn’t hear what the doctors were saying at first because his world was crashing.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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I was just left there in this world on my own for this moment, trying to figure out what happened. How? Why? So while I was in that mode, he comes back into there and they start asking me about my health. And while he was asking me that, I'm just looking at my world crashing. That's all I thought, was everything that I worked so hard to get to at this moment, driving the Coach bus, doing what I love to do is about to be ripped away from me. Somehow I got to get ahead of this. So whatever he was telling me at that moment, I didn't hear anything he had to say, except for everything about you is rare. And that's when I popped back into focus, and I was like, I said, “Sorry, what did you say?” He said, “[NAME],” he said, “Everything about you is rare.” He said, “We sent your specimen in for testing.” And he said, “You have the rare form of colon cancer.”
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Because it was like I had, I had, what did he say? He said I had 51 polyps. One of them was stage three, stage two going to stage three cancer. 51 polyps, all of them was in my colon. It was only one that was in my rectum. But I don't know which one was the stage two, because they never told me. Because most people ask questions, I want to see. Let me see the charts. Let me see. I was still in the blank phase just listening to this man telling me pretty much you going to die soon. You going to die one day. That's what it was coming to me, because my mother passed away. So what I developed, I developed that mind frame. You know, so when I have a conversation, if I have a conversation with you and we talking, it's like, it's just over my head. And then it’s like, “Well, [NAME], what are you going to do with your life?” I don’t know. I got a bucket list I want to do because now my life is on a timestamp.

 

Becky believes her doctor did the best job possible explaining things but she still didn’t understand most of it until later.

Becky believes her doctor did the best job possible explaining things but she still didn’t understand most of it until later.

Age at interview: 39
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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But, as for Dr. [NAME], I mean, I've got-- because I have a binder of every bit of information that came across the table-- I've got all his drawings, you know, explaining all of my different options. I felt like he did a really good job of explaining them to me. And it's one thing that I've thought about looking back on all this is, because there are certainly moments where I felt like, oh, I wish I had known that, or I wish someone had explained that a little bit better. But I think a lot of that information, there's just no way I could have digested it until afterwards anyway. So I'm not sure that anyone could have done a better job with more information ahead of time or explaining things differently. You just can't understand it until you've been through it in a lot of ways.

 

Steve Z. says his team really knows how to talk to patients who are anxious.

Steve Z. says his team really knows how to talk to patients who are anxious.

Age at interview: 50
Cancer-Related Experience: Elevated Risk
Type of Inherited Risk: A polyposis syndrome
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And I didn't have a lot of questions for him, but he just put you at ease with knowing what's going to come up next. And I think that was the big part-- you know, how they put you at ease in what was going on, when all you have is questions, like, oh my god. “First of all, do I have colon cancer? Am I going to die?” And, you know, they just know how to talk to their patients. So I was lucky that way. You know? And then everybody I've worked with since down there-- it's the same thing, because they're all under this guy. It's a team. Never seen anybody in isolation, really. It's always been a group of figure problem solving on behalf of me, which is really nice. I didn’t-- if I have a problem with school, I figure it out.

Getting Bad News

Several people we interviewed spoke specifically about what did or did not work in their experiences of getting bad news from doctors.  Becky said she appreciated her doctor putting hands on her shoulders, looking right at her, and saying “’I got to tell you, this isn’t going to be good’” before telling her she needed more biopsies.  Other people were given unexpected results – for example, confirming Lynch syndrome – and felt without appropriate preparation for  news they “never had a chance to understand what’s going on… it’s just the ball rolls so quickly… there’s no opportunity to… absorb all the information…. you’ve been handed.”

 

Heather says bad news should be delivered in a better way; it was scarring for her to learn she has Lynch syndrome so suddenly and without support.

Heather says bad news should be delivered in a better way; it was scarring for her to learn she has Lynch syndrome so suddenly and without support.

Age at interview: 33
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Lynch syndrome
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So a couple days later, I go to get my test results. And they had me come in in person, which they said we were going to do this regardless. You're going to come in either way. So I went in kind of believing that I was going to be told it was negative. And I went alone. I went wholly unprepared for any type of news. And you know, it was just me and a genetic counselor one on one, sitting in a room. And he came in and handed me a piece of paper and said, you know, “I'm sorry to inform you, but you've tested positive for Lynch syndrome.” And then proceeded to spend an hour, you know, diagramming what genetics are, and what this means, and where my mutation lives, and all the cancers that I'm now at risk for, which was like eight-plus cancers. Not just colon, which is what I'd previously known it to be-- colon and stomach. And it was a massive blur. I, I took almost nothing away from it. I sat in shock. You know, I was choked up. I thought, I'm alone. No one's here with me. I'm now getting all this information. He's telling me the screenings that I need to do in order to stay on top of my health care. And I walked out of there-- I couldn't have repeated probably anything that he said to me. And so it was a very overwhelming experience. And I think that was kind of the first thing for me about being diagnosed with a hereditary cancer gene, that was like, this isn't right. Like this isn't being handled properly. The way in which that news is to be delivered should be different than this.
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You know, my experience in getting the news that I had Lynch syndrome, it was very scarring. And I, and I think, on some level, I want to be aware of it just being a scarring experience in general, and I don't want to blame this poor genetic counselor for all of it. But on the other hand, I do think that there is so much that could have been done in this process. Delivering news about somebody's health that is going to affect them from here on out. It changes what they know to be true about themselves and their identity and their future has now been altered. And you just delivered that news. I really wish that that news had been delivered and there had been some kind of, I don't know, a care coordinator, or, or just counselor, like therapist counselor, to then be there to say, “How are you feeling? What do you want to talk about?” Because I was reeling about what that meant for me and my life, and I was not thinking about, ‘OK, logistically, what are the next steps I need to take?’ And then I wish that that meeting with that genetic counselor would have been some period later. I don't know, come back in two weeks and we'll then go over all this information. Because I think there was a huge amount of information to be learned in him teaching me how genetics work and how my specific mutation-- the location of it, and how, what it means, and how having this deletion results In this activity. Because I walked out of there with just little like pieces that may be missing context. And you know, I walked out of there with a sheet of paper that listed, here's your seven annual screenings that you need to have done.

Ongoing Conversations about Cancer Risk

Conversations with medical professionals shifted into a new gear for many people once their genetic risk was established and better understood.  Jack noted that despite “not being happy about it,” he knew he needed to follow medical advice when his doctors recommended colon surgery, because they said given his Lynch syndrome “there’s enough of a danger there that [your polyp] is precancerous, or might even be cancerous.”Several people with breast cancer risk appreciated their doctors talkingto them frankly about options to prevent “spend[ing] the rest of life waiting for the other shoe to drop.”  A number of participants spoke explicitly about how communication with their clinicians unfolded as well as about what was said.

 

Desiree is grateful that her doctor takes her seriously when she raises a concern.

Desiree is grateful that her doctor takes her seriously when she raises a concern.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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And I was doing well. I followed up with the guidelines. And so I went, and I had my screenings. And I had my doctor’s appointments. And I was doing well. And then I like to say that I had a spiritual encounter. One morning, I got up, and I went to the bathroom, like most people do upon rising. And I heard a voice tell me to check my breast. And so I started looking around and saying, “OK, I was not out the night before. I wasn't drinking. I don't take drugs. And so where is this person? Because the voice is pretty loud and pretty clear.” And that's when I realized, you know, oftentimes we do hear people say that they've had spiritual encounters. And I presume that was what that was. And that's why I've classified it as such. And so I said, “OK, let me prepare to do a breast self-exam, because that's the only way I know how to check my breast.” And as I prepared to disrobe in front of the mirror to do the exam, I noticed a lump. And I did not see that lump the night before. And I was just like, “Wow, that's interesting.” 
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And I knew that I would hear from my surgeon on Monday. And so Monday morning she calls me. And she says, “Desiree, what's going on?” And I said, “Well,” and I proceed to tell her the story in terms of the voice. And she said, “Oh.” She said, “you know, it's been eight years.” I said, “I'm well aware.” She said, “And you just had a mammogram six months ago, and it was negative.” I said, “I'm aware.” And she said, “I really don't think that it's cancer.” I said, “Hopefully, you're right.” I said, “But I really don't think God would have come at that hour of the morning to tell me to check my breasts if there was no action needed.” And so she said, “That's fair.” She said, “So, you know, Monday is my surgery day. I'm about to go into surgery, but I wanted to call you before I got started. So what I think you should do is come first thing tomorrow morning, and let me see you before I start my day. So try to have a good day, and I'll see you tomorrow.” 

 

Amy appreciates her health care team keeping in good communication and telling her promptly when she needs further exams or tests.

Amy appreciates her health care team keeping in good communication and telling her promptly when she needs further exams or tests.

Age at interview: 30
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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It sounds like you’ve talked about your health care team. Do you want to talk a bit more about the, the, the health care team that you had and what worked, what worked about it 
Yeah, I mean, they're very, they're on top of everything. And they definitely keep in communication. If I tell them anything I'm concerned about, they will set up an appointment. There’s, it's kind of crazy. I get swollen lymph nodes under my arm if I switch any sort of deodorant or anything like that. I'm just very sensitive to it. And right when all this stuff is happening, I did not know this, I had like seven swollen lymph nodes under my arms, which was a very early sign of, you know, breast cancer. And they were hurting, they were terrible. I mean, they were, I was in pain. And I went into the doctor, this was at, it was just time for my routine exam with my health care person that I go to see for my breasts. And they said, “OK, well, you got to go right now even to get a scan because that's [INAUDIBLE].” I said, “I really think it's because of my deodorant I switched, but I don't know,” because this was just when I figured out I was allergic to switching or something like that. I don't know what it was that was causing it. And so they sent me directly over to the next building, and I got an ultrasound, a MRI, and everything done. And they just, they're very on top of it, they don't take any chances. 

 

Paul says he had a lot of conversation back and forth with both his surgeon and his gastro doctors, who didn’t always agree, when deciding whether to have his stomach removed.

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Paul says he had a lot of conversation back and forth with both his surgeon and his gastro doctors, who didn’t always agree, when deciding whether to have his stomach removed.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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The issue with that practice and with the surgeon-- and the surgeon was great, he was he was an amazing surgeon-- but there were a lot of communication issues. And that initially, with the information he had, he was like, “yes. OK. Let's go with this.” But then, you know, like any surgeon, he wanted his own people to do tests. So I had some tests done with his people. And then he had changed his mind and was like, “well, I don't really think we need to do this.” And so he looked up some information. And then I saw my gastro doctors again, and they were like, “no, you really should have this done.” And then I speak to the surgeon, and he's frustrated. And he's like, “well, I thought we talked about this, and this is maybe not the best way for you to go.” So it was kind of-- it ended up with, “well, it's your decision,” from both ends. Because, again, there just wasn't enough information. And even though both teams-- the surgical team and the and the gastro team-- were both very good, they just-- nobody had enough information to say, “yes, let's pull the trigger on this.” So my wife and I just eventually took all the information that we had and made the decision.
How long was that period between the identification of the stomach polyps and the surgery? It sounds like it was a while.
Yes. I want to say it was at least a year. It might have been closer to 2. So somewhere between-- again, I said, my conception of time is very is hazy at best, but it was it was between a year and two years of just going around and around and around. And again, it was it was nobody's fault.
Right.
Nobody to be the one to say, “don't have the surgery,” and then I develop cancer. And nobody wanted to be the one to say, “you should have the surgery,” and only to find out, “well, you didn't really need it.” And I completely understand that. And that was the position that I was in also. I mean, I don't want to have such a drastic surgery if I don't need to. But I also don't want to not be proactive, and then find out later that that was the wrong decision.
Yeah.
So yeah. And again, it goes back to being to being your own advocate. Because there were there were two medical teams that were highly knowledgeable, and very good, and communicated very well, but just disagreed. And it kind of put me in the middle. And it’s but on the plus side, it does force you to become knowledgeable about it. Because, you know, again, you have to be the one who makes the decision.

Other people we interviewed, however, described situations with medical providers when communication was not as good as they wished it was. Thomas said his doctors didn’t understand how difficult it was for him to absorb news when he was so upset about it, so he “developed a mind frame… [of] it’s just over my head.” Paul said it’s frustrating when medical professionals are “speaking to me in a way that’s like, well, this is what you have to do” when they’ve never “had to do it…[themselves and] don’t know how difficult it is.”

 

Barry doesn’t feel like his primary care doctor told him everything he wanted to know.

Barry doesn’t feel like his primary care doctor told him everything he wanted to know.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Family history of cancer
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I don't want to say that my—that my primary doctor— you know, he told me things. But he didn't tell me everything I don't think for some reason. Just like my primary doctor was also dealing with my workers Comp doctors. You know.
Right, so you had--
So I had--
--a few different directions.
Directions, you know.
Yeah, yeah.
You know--
But when you said he didn't tell you everything, were there things you wished he had told you that he didn't tell you?
Yeah, mm-hmm.
Like what?
Well I think I would appreciate rather not, well, first, if I really needed it done or what other procedures could I have went through if they could’ve been. You know.

 

JanLynn was upset that she had no explanation about why she was sent to the genetic counselor.

JanLynn was upset that she had no explanation about why she was sent to the genetic counselor.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I will say that as another, something that I think a genetic counselor can do. When I walked into my doctor's office there was no explanation of why you're here and what the purpose of asking you all of these questions. Why it is that you need to see a genetic counselor because I think they assume that you know. And simply to ask, “do you know why you're here? Do you know what this means? Do you know what we're going to be”-- and then if they don't, then take the opportunity to explain because I had no idea. I mean I walked out of there. I was angry through the whole appointment. Doctor [NAME] probably thought - my doctor probably thought I was a very angry person which I was. But I had no idea what was going on. I still don't remember anything that she said. I remember most of the questions. But I wasn't really listening because I was caught up in my anger of “I don't even know why I'm here. Why am I here?” Which leads to, “why did I get cancer?” You can go down a really long road with that. But I would say that for doctors who had received a referral doesn't mean that the patient knows why they got the referral or what it means or what it's going to mean or any of that. Because I don't think a lot of people go in knowing and knowing the questions to ask.

 

Ronnie wishes the professionals talking with her had been better attuned to her fear, and to language that might feel bad to hear.

Ronnie wishes the professionals talking with her had been better attuned to her fear, and to language that might feel bad to hear.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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People are going to be fearful. Any mention of cancer, even if it's the earliest stages of testing, people are going to be afraid. And you have to be-- I think you have to-- if you can do something to cater to that a little bit more, because then you feel like, oh, the fear isn't-- why am I-- you feel bad for being scared. And it's totally understandable. But people are going to be fearful. And I don't know. You have to recognize and be attuned to people's fear and do what you can to alleviate it.

A few people we interviewed noted that their doctors either minimized or missed clues about their genetic cancer risk.  For example, when Lisa S. realized she had close relatives diagnosed with breast cancer she spoke to her doctor about testing, but the doctor responded “Well, why would you want to do that?”

 

Eve is both relieved to know Cowden syndrome explains her many health problems and angry her doctors failed to listen to her concerns earlier.

Eve is both relieved to know Cowden syndrome explains her many health problems and angry her doctors failed to listen to her concerns earlier.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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I went to doctors and they were, they kind of ignored me. And when I discovered that I had this genetic issue, I was pretty angry.
Why were you angry?
Because they made-- the doctors that I saw made it about my weight. And, you know, it was just about my weight. And, you know, when I had the hysterectomy issue going on, I was already in the system, because I was still having issues with my breasts. But the breast surgeon that I saw I did not want to do other breast surgeries, because everything had been benign. And they could have done some googling. You know, they could have looked further. And I was just, you know, the fat woman in a gown, you know, sitting on the table. And it's just easier for them to be, like, “have you looked into a Mediterranean diet” than to take five extra minutes. And I know that these doctors are overworked, and have to deal with insurance you know, seven out of 10 hours of their day. And I know that it's hard. But I kind of, I'm going to be selfish here and say that I’m worth it to the people that I see outside of outside of a medical setting. You know, I have a lot of roles that I play to a lot of people. And I know that a lot of-- you know, everybody's worth the extra mile.

 

Wish List for Good Communication

A number of people we interviewed described specific ways they wanted their clinicians to communicate.  Some said they want “a bigger focus on the emotional aspect” of talking about cancer risk.  Others felt the exact opposite and didn’t "want a physician to ask me how I feel… because feelings have nothing to do with any of it”.  Sue said she’s a “detail-oriented person” who wants “all of it” when it comes to information, and “don’t sugar-coat it.”  Irina wishes her clinicians had been able to adapt how they described her hereditary cancer risk given that she herself is a scientist with a deep prior understanding of the issues.

 

Asante describes needing a doctor who could talk with her about terrifying news while sitting beside her instead of across a desk in a white coat.

Asante describes needing a doctor who could talk with her about terrifying news while sitting beside her instead of across a desk in a white coat.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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If you go to a doctor and you get that uh-oh feeling, walk out the door. Just do an about-face and walk out the door and find somebody who you are going to feel most comfortable with. Because you are going to be with that doctor for the rest of your life. And I am with my doctor for the rest of my life. And we have an amazing relationship. You know, a friendship, I feel. And when he was honored, I had to be there. And I'm sure he has a lot of patients that feel that way about him, but I just can't speak highly enough. Because for me, I did not want the doctor in a white coat sitting behind a desk telling me this terrifying news. I needed somebody who was going to sit beside me. And he sat beside me, and he used choice words that I won't say on camera. He was able to drop a couple bombs. And so I felt most comfortable with him. And so that's why I stayed with him.

 

Joan says she looks for doctors who balance being positive and personable with having expertise.

Joan says she looks for doctors who balance being positive and personable with having expertise.

Age at interview: 63
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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I, well, again, speaking for me only, I need to be  with physicians who shoot from the hip, but are positive. I fired a physician because he was negative and had me dead and buried. And I had another physician who I really didn't, he-- it's hard, because you want to go to the best, but you also need a little bit of bedside manner. But you don't want to compromise your health for someone being warm and fuzzy. So it's a delicate balance.

 

JanLynn wants her doctors to simply answer questions and not talk ‘around the world’ in complicated ways.

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JanLynn wants her doctors to simply answer questions and not talk ‘around the world’ in complicated ways.

Age at interview: 47
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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So part of it is presentation, OK? So not to use a savvy voice with me. That really bothers me. Not to talk around the world about an issue and then say what it is. Just say it because the whole time you're talking around the circle, I'm not listening. I don't hear it because I know you're getting to something that I need to know but you're not getting there. You're taking forever. When asked questions, simply answer the question. And if the answer is, “I don't know,” I do know there are things the people don't know. It's a frustrating response but there really are things-- or you know, to say, “I don't know for sure but these have been the experiences of some other people.”