Healthcare Professionals

In the process of reflecting on their own experiences, the people we interviewed also offered some advice to doctors and other health care providers who take care of people with breast cancer. Many of their messages include suggestions for improving how providers interact with patients. Learn more about what people we spoke with saidmatters to patients, including in their Relationships with Clinicians and in Navigating Healthcare. Everyone we spoke with wanted to feel heard by their providers. “Listen to your patient,” Linda advised. “You know what I’m saying? Listen. Answer questions…I’m a real-life person here.”

 

Debbie describes how she thinks patients want clinicians to communicate.

Debbie describes how she thinks patients want clinicians to communicate.

Age at interview: 58
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

Write things down for your patients because that's a tremendous asset to have. Go everything, go through everything, and in detail, and don't be rushed. Take your time. That's one of the things that I've experienced is that all of my team has not ever made me feel like I have to be in a hurry. They've allowed me to take my time, you know, think of questions. If I don't think of them at the time, you know give us a call if you think of it later. And so just remain available, write stuff down, give as much information as you can. If there's things that the patient needs to research, give them that information and where to look.

---

Don't come at patients with a bunch of terminology that they don't understand. Break it down in terms that they can understand. It's fine to have, you know, the fancy words. But don't leave it at that. Explain everything because--and maybe more than once, probably more than once.   Write it down. Make sure that they understand and don't be standoffish. Be real because that's what we want is someone to be real. We don't want someone to be fake. And be kind. Be kind and compassionate. Once a friend asked me, “Well, if you had to choose between someone with a good bedside manner or someone that was the best in what they do, which would you choose?” And I said, “I believe you can have both.” And I don't think I could work with someone or have a doctor that has no bedside manner, and that wasn't kind and compassionate because then, that tells me, what do you care about me? I need to know that you care about me. So be kind. Take the time to talk to me. Be compassionate. You know, maybe talk to me, get to know me a little better than just about the cancer because I am a person first, not just a patient. So make me feel like you really care about me, that I'm not just another patient to see.

 

Lisa J. says it's important for clinicians to really know their patients.

Lisa J. says it's important for clinicians to really know their patients.

Age at interview: 54
Breast cancer type: DCIS breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

There has to be a meeting of the minds, where it's you and the patient are a real team. You have to know the background of that person. I'm not saying you're sitting there like their therapist, but you kind of have to get to know them.

Give Me Time

Many people said how important it was to them to not feel rushed. Amy spoke about the need for doctors to give their patients time to absorb the news after receiving a new diagnosis of cancer, and Carrie urged providers to “give people a chance to breathe and to feel like they’re, that they can make decisions and that they and have a minute to think about it.” Some people focused on what happened during their doctor visits, noting that many things that are important to them require time to consider, let sink in, and discuss.

 

Becky talks about how it can take time to open up to a doctor.

Becky talks about how it can take time to open up to a doctor.

Age at interview: 39
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

I felt like I ended up with doctors who took time to understand my personality.  I can say that for sure about two of my doctors, that they absolutely in their crazy, hectic, frantic days, took time to understand who I am and the best way to talk to me about things. I think I got lucky with the other two doctors, that it really just worked out that way. That we were a good personality match. Not to say that they didn't put that effort in.

---

So, feeling like you're not being hurried to go through what you're going through. Ask multiple times, “Is there anything else? And ask those prompt questions that aren't ‘yes’ or ‘no’. And because it's going to take people time to feel comfortable sharing the really awful side effects in a lot of cases that come with this. They're not parts of your body you feel comfortable talking about.

Tell Me the Truth in a Way I Can Understand

The people we interviewed wanted conversations with clinicians that would help them know what was going on with their disease and their treatment. Janet B reminded doctors that it is their job to “make sure that a patient is understanding the process.” Carrie advised clinicians to try to find a tricky sweet spot with patients: “you don’t want to come off sounding condescending,” she said, “but you also don't want to speak in terms that people are not understanding.”

 

June explains how she wants doctors to talk to her.

June explains how she wants doctors to talk to her.

Age at interview: 76
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

Tell the truth. We are not stupid out here. We want all of the truth, not just half of it. And then I have to research it later and come back to you and say, “Hey, why didn't you tell me this? Or did you forget to tell me this?” You got to be nice, because you still want more information from them, you know. But I didn't like that I wasn't told I something, or they assume that I know something. Well, I'm not a colleague. I am a patient. Patients do not always understand what the colleague is thinking. I mean, what a professional person is thinking. And we have to be told in no uncertain small terms. That's why I like Dr. [NAME]. And that's why I like the surgeon. I say, “Talk to me like I'm your grandma that lives up in the upper, up north someplace, that went through sixth grade, and that's it.” You know, “Treat me like that when I'm asking a question because I'm not going to understand your symbols, your initials of this and that. You have to tell me what the word is, and then tell me what it means. Otherwise, I have to write it down.

And then I got to go home and look it up.

Yeah. Yeah, so don't sugar coat.

Don't, you can put it simple. Don't sugar coat me. I need to know all the facts, so I can make decisions for myself.

 

Peggy wishes her doctors had been clearer about what they didn’t know.

Peggy wishes her doctors had been clearer about what they didn’t know.

Age at interview: 36
Breast cancer type: Metastatic breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

I was hoping they would have more answers. But then they don't know how much time anybody has. And it's not an exact science. I wish they would've told me that, really. Like, each person is different. So, we're going to try this and see if it works.

Did you think it was an exact science? Were you surprised?

 I was surprised, because I thought, you know, we did the chemo. We did the radiation. We did the oral chemo. And I thought, oh, we’re going to be good. And I asked, you know, she said it was very unlikely that it would spread within the first year. And it did.

Treat Me Like an Individual

Providers need to realize “we’re not cookie cutter,” Janice said. The people we interviewed wanted doctors and other providers to take their preferences, values and needs into account every step of the way. Respect patients’ decisions, Sarah urged. “Let them have control where they have control. And the control that they have, make sure they know they have it.”

 

Precious suggests clinicians adapt their communication style for each patient.

Precious suggests clinicians adapt their communication style for each patient.

Age at interview: 65
Breast cancer type: Metastatic breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

Be gentle. Be informative but let them take the pace.  For instance, when I go to   the dentist, I don't want them to tell me every detail of what they're getting ready to do to me. But that's me. Some people want every little detail about that. So, you just have to learn your patients and let them guide you into what they want to know or don't want to know about their medical condition.

 

Alison wants clinicians to ask patients “what matters to you?”

Alison wants clinicians to ask patients “what matters to you?”

Age at interview: 59
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

I absolutely think that every clinician in every field needs to get into the habit of asking, “What matters to you?” And then framing their answers in terms of, “Okay, well, if this is what's important to you, then I could see why maybe you wouldn't want to take this drug. Let's see if there's an alternative. Well, there's this other drug. It's somewhat less likely to take it. Maybe could try it, and you could see if you tolerate it. Or, maybe we could just start a lower dose.” Being treated by clinicians as an individual rather than as a set of symptoms was important to the people we interviewed. Alison valued being able to make her own treatment choices instead of being told what to do. What you're supposed to do is you're supposed to either choose mastectomy without radiation or lumpectomy with radiation. And, you know, those are your choices. And I'm like, “Okay, I'm choosing lumpectomy and I'm choosing no radiation.” And what I did appreciate is that I did not get any sort of pushback about, “You must do this, that, or the other.” Which is good because I would have pushed back and said “Make me."

---

I just kind of took the reins and made the decisions. A lot of people just, and I’ve kind of challenged people on some of the Facebook groups. They're like, “Well I have to have radiation.” And I'm like, “Have to?” And then she's kind of like, “Okay, because I'm choosing to.” But it's like, that's an important, you know, it may be that if that's a choice you make that you go through it better if you feel that you have the autonomy of choosing it, not being told that this is a thing you have to do.

Being treated by clinicians as an individual, rather than as a set of symptoms, was important to the people we interviewed. As Maria H put it, she wants to be seen “as a person not as a sick breast. And that makes a very big difference because…my breast is sick, but my heart feels.”

 

Carrie says it’s important for providers to know patients as people.

Carrie says it’s important for providers to know patients as people.

Age at interview: 54
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

I can appreciate that they probably don't have a whole lot of time to get to know people. But if there is any opportunity to get to know somebody as a person, as an individual. I think, that's helpful. Or even, you know, just even if they mention that they love dogs. You know, I don’t know, write down a note, and the next time they come in, say, ‘How's your dog?’ Or ‘Did you see that kennel club show.’ Or I don't know. It's just something. It means a lot to people to not feel like they're a slab of meat, or they're on an assembly line, because yeah. I mean they're saying, ‘I'm coming to you to save my life, and so I want you to be smart, and I don't need you to be my best friend. But it would be nice if I felt like you really actually cared and have some interest in me as a human being.”

 

Kawanna wants clinicians to know how much it matters when they pay attention to patients’ lives, not just their disease.

Kawanna wants clinicians to know how much it matters when they pay attention to patients’ lives, not just their disease.

Age at interview: 38
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

So, for the health professionals I didn't think about this one. I know what it is, the gist of what I want to say. I think sometimes they do a well enough job of getting a better understanding of their patients outside of just that particular treatment. But I think it's important to know what other factors play a part. And I don't think that that's always, I think that's how you understand what that person's need is. Actually, doing radiation, the nurse is actually the one who-, who mentioned to me a program, because my concern at that point was, all right, we're running on one income. Between the gas and the car and having to, the alternate, all of these things play a part. And these are things that are also weighing on me. And it might seem small, but these are all things that-, that play a part. The kids finish school at a certain - oh, and on Wednesdays, at a certain time, and, you know, so, I can't have treatments those days. But the doctor's not in this day and this day. All of these things weigh on the patient. And someone told me about a car service program through American Cancer Society. And I had no idea how much a relief that was going to be. They came, and they picked me up every day and dropped me off back home. And then that meant—because there were some times where I-, you know, [LOCATION], there is no parking, especially where the major hospitals are. So, there was days where my husband and I were paying for parking. That's $20, $25 sometimes, and that's just for a few hours, and even $15 for, because radiation, it goes very quickly. But that began to take, that adds up. I had to do radiation for six weeks every day. So having the car service, and there was days where we could leave the car on the right side in the event that we couldn't find parking, and he would be able to come with me. And it was just such a relief. But you don't know these things unless you're really invested in what's affecting the mood of your patient.

Examine Your Own Assumptions

Many people we spoke with wanted health care providers to be more aware of how the assumptions they make and ways they treat patients may be shaped by stereotypes based on things like race, ethnicity, gender, income level, or type of insurance. These kinds of biases, people pointed out, can be inappropriate or even harmful to patients.

Amber, Chelsea, and Kerry, all of whom were young when diagnosed with breast cancer, urged clinicians to take younger women’s breast health symptoms seriously, even though cancer is rare for people in this age group. “Listen to your patients,” said Chelsea. “Don’t write off” a lump because the patient is at an age when breast cancer is relatively rare.

 

John wants the medical community to change how they approach men with breast cancer.

John wants the medical community to change how they approach men with breast cancer.

Age at interview: 60
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

And the medical community, they really, we have to change the way they look at men. They give you paperwork and there's a lot of questions that are geared for women: when was your last period and so on. They should have two separate bits of paperwork for you to fill out, one geared towards men. And there, I'm sure, questions you can ask specifically for men.

 

Casey wants clinicians to understand what it’s like for a transgender man to have breast cancer.

Casey wants clinicians to understand what it’s like for a transgender man to have breast cancer.

Age at interview: 56
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

It doesn't make you a woman. And it's okay because it does, a lot, some people could go into it, that, like myself, and go into it of, “Great. I have breast, I have a girl's cancer thing. I have a girl’s cancer. I have a woman's cancer. I'm not a woman. How did I get a woman's cancer?” Now you can start going into, if you're not that strong, you could go into another weird, ugly place. That this is my last drive. I went through this all my life. And now I have women’s, a female cancer that could, could not kill me. Who am I now? Am I. So I am still a woman. But I don't define. You could go into a really weird place. And I could see it happening. They just have to understand that it's not. And it's also educating the medical field, to let them know that it's still, you're still the same person. You're still transgender. You're still the man that you want to be or the woman that you want to be, you know? What about transgender women? They get testicle cancer because they have, they've chosen not to remove that part. And now they get that, and they're in dresses. And they're, I mean, it's the same thing. Something that you're not, that you don't believe you are. And then you get it. So, I think the physicians and medical folks should be trained on that.

 

Asante talks about how urgent it is for clinicians to listen to Black women.

Asante talks about how urgent it is for clinicians to listen to Black women.

Age at interview: 44
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

Listen to black women, please. That's the biggest thing. Like, I feel like we are expected to be so strong and have such a high threshold for pain when it comes to the medical industry. And if we're complaining about something, I'd like them to listen and take action. And if you run a million tests and nothing comes back, then you've done your job. But don't shrug us off and say it's nothing.

Right.

Because that is how many of us are dying. So, not my doctor, specifically, but I know doctors out there who were not listening.

Exactly. Yeah.

And I think that is the key to-, that's one of the reasons why we don't have trust. We don't have faith in our medical system. You know, and I feel like sometimes, it's important to sometimes seek out someone who looks like you. You know, my surgeon looks like me. And that's important for me. You know, representation matters. So, if you have to seek out someone who looks like you, do it. You're your best advocate.

---

Trust what I'm saying to you. Trust that, you know, if I'm coming to you, it took a lot for me to get here. And I need you to really take the time to listen to me.

Yeah.

And don't assume that, you know, I have a high threshold for pain because I'm African-American.

Right.

You know, and a female. You know, we're dying. We're dying of childbirth in 2019 because of that. We're dying of cardiac arrest in 2019 because of that. You know, and I know that breast cancer is no different, because I know that people, women, black women have been shrugged off and said, it's a fibroid, or this or that, and we didn't follow up because we trusted what you said.

Feelings of Gratitude

People we interviewed expressed a lot of gratitude towards their clinicians. Victoria, for example, when asked what messages she had for doctors said, “Thank you very much to everyone….Thanks to them we are here, because they don’t allow us to give up.” Chelsea gave thanks to clinicians “just for their commitment to breast cancer.” Amy wanted clinicians to hear her say “just thank you, and don’t quit. Stay with us.” Many people described how hard they know their clinicians work, and how difficult they know this work must be on an emotional level.

 

Kerry wants clinicians to hear her message of gratitude.

Kerry wants clinicians to hear her message of gratitude.

Age at interview: 36
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

Also, thank you to the doctors that have helped me live and found the cancer, the second cancer. And thank you for being very confident in what you're doing. And we need more confident people like that. It's not arrogance, it's confidence. You know, that's very important. They're not blindingly medicating, but they're actually looking at all of the puzzle pieces and putting it together and saying, this is what's best. Thank you for that.

 

Victoria gives thanks for all the clinicians she met through various stages of treatment..

Victoria gives thanks for all the clinicians she met through various stages of treatment..

Age at interview: 43
Breast cancer type: Invasive breast cancer
SHOW TEXT VERSION
PRINT TRANSCRIPT

And to other people who care for health, nurses, doctors, staff involved in care, what message would you give to them?

Well, that thank you. Thank you. Because they are there, they support us a lot. At least I felt that when in the chemotherapies, there was a lot of support from the nurses. I felt like they were angels in every moment because they never said a word that didn't treat me with friendliness. And thank you because they always treated me well. Always, always were in every moment, if I felt fine, if I didn't feel well, if—in every moment. Thank you, thank you. Same with the doctors, my oncologist, to the surgeon, thank you very much because they were part of my life, of my—one could say, yes, of my fight. And I came out ahead with all of the oncology personnel staff, surgeon, from radiation, from the nurses, from the chemotherapies.

Y a otras personas que cuidan de la salud, enfermeras, médicos, personal envuelto en el cuidado, ¿qué mensaje usted les daría a ellos?

Pues que gracias. Gracias. Porque ellos están ahí, ellos nos, nosapoyan mucho. Al menos yo eso sentí cuando en las quimioterapias, fue mucho apoyo de las enfermeras. En todo momento sentí como ángeles, porque nunca me dijeron una palabra que no siempre me trataron con amabilidad. Y gracias porque siempre me trataron bien. Siempre, siempre estaban en todo momento, si me sentía bien, si no me sentía bien, si--en todo momento. Gracias, gracias. Igual así a los doctores, mi oncóloga, a la cirujana, pues muchas gracias porque ellos fueron parte de mi vida, de mí--podría decirse, sí, de mi, mi lucha. Y salí adelante junto con todo el personal de oncóloga, cirujana, de la radiación, de las enfermeras, de las quimioterapias.