Ask the Expert: Advanced Breast Cancer: Provider’s Perspective

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The Expert: 

Kristen Zarfos, M.D., FACS is the Medical Director of the Karl J. Krapek, Sr. Comprehensive Women’s Health Center with Trinity Health Of New England Medical Group at Saint Francis Hospital.

What is advanced breast cancer?

It can be extensive disease in the breast itself or disease that’s gone beyond the breast. 

Are women with advanced breast cancer at higher risk for emotional distress? 

So, I was thinking about this a great deal, that when we go through life, whether in your 30s, 40s, 50s, 60s – our audience today – many of us just think they’re endless possibilities, and I think that’s a good thing for women. I think we shouldn’t put a cap on where we think we can go with our lives. And then one day, you’re told you have advanced breast cancer and suddenly there seems to be a cap or roof on where you can go. And I like women of all ages understanding that, you know, we could do all sorts of things. And suddenly, we face your own mortality. Now, I am 69. I was diagnosed with an early breast cancer very recently, but I have to tell you, why even at 69, I sort of thought well, I can still do and go and do whatever I want. And kind of you can imagine that for a 69-year-old woman. What about a woman in her 30s or 40s, who’s facing advanced breast cancer?

So, your question about how it impacts us with depression and loneliness and sadness, of course, because suddenly we say to ourselves, well, I’m not going to live forever. I mean I mean we all know that, but it’s it’s more tangible. That’s the first thing. The other thing is if you’re a mother, you immediately think about your children. What is the impact on my children? And if you’re a daughter and your parents are still alive, you think: I’m not going to be able to help take care of my parents.

So, I think that’s the first thing that women think about. What are the implications? And then you add on to that … Will I be able to work? Will I be able to continue my insurance coverage so I can receive the treatment, because what if I can’t go to work? And what is the cost? We all know how many people end up with prohibitive costs and bankruptcy because of health care treatment. And getting back to the definition of advanced breast cancer, thinking about having to have extensive, body transforming surgery if it’s a large breast, and the potential for chemotherapy. And what does that mean for me as a woman? That’s changing what my body looks like and losing my hair potentially and of course, then there’s death. So, I think yes, there is a high risk for emotional distress and that’s why every comprehensive breast program should have a social worker and a network of support groups to help women with emotional distress, including depression, the anxiety of all those questions I just said. And the grief of loss, loss of your life as you know it. I liked your question about loneliness because many women put up a barrier. They want to be strong, or more importantly, they don’t want to be quote ‘a burden’ to their children or those around them. And that, I encourage people to understand that it’s the greatest gift you can give to somebody else: to allow them to help you. And the great thing that’s happening, and women are amazing, aren’t they, support creating support groups, not just support groups in the context of having breast cancer, but social groups organizing meals, uh, taking the children to soccer or if you’re older picking up your dry cleaning whizzing, and so the issue of loneliness, if a woman can allow herself to her friends and family to help her out, she should understand that’s a gift to them.

How does provider bias affect a patient’s physical and emotional well-being? 

Well, we just had a discussion here in our breast center on an implicit bias last week and it really stuck with me about bias, that the most important word is pause when you are seeing somebody new, whether you’re a provider or a patient, to pause. So let’s, I was thinking implicit to provider we want to give patients realistic hope. I want to emphasize realistic but I want to emphasize hope. It is wrong for me to suggest to someone who has metastatic disease they’re going to live forever, right? That’s that’s wrong, but we know if you take away hope from someone that um, uh, it’s wrong, but it has to be realistic hope. So, there is this bias when we have patients with advanced disease, some providers might retreat into not wanting to tell them the truth and to frame it.

It takes a lot of time, and for all of us who are patients, we know that time is a precious commodity when you see your provider. So I’m not sure this question was about this, this bias of how we as providers might feel about patients with advanced disease, but I want to throw it in there. There’s also cultural, racial, socioeconomic bias, and I think that this session we had here, that when you feel some sort of bias, immediately the first one should be pause. You know, pause and think about that bias, but it’s a two-way street. And I often am worried that when I have a patient who doesn’t speak the same language that I do, that she may have bias against me in that she’s afraid that I cannot understand her life. So bias goes both ways and I I’m lucky that where I work I have um, uh, translators who are trained and that is helpful. But, still, how can you turn your life over to a provider if you think that provider cannot understand your socioeconomic status or your language or your culture of different religious, uh, areas? Um, and so I think it’s really, really important that word, pause, when when we have bias, and perhaps we should encourage patients to also pause. Give me benefit of the doubt. They do, I’m very lucky, but it is it is a two-way dance and we have to be able to get beyond where we come from, of the color of our skin or our language, in order to get to what the most important thing is: to build trust. Have a building a building, a foundation of a trusting relationship with a patient so that hopefully bias will not be the centerpiece of that relationship. So we can get into the issues of advanced breast cancer.

What do you do as a healthcare provider to help patients feel comfortable? 

When I meet a patient, I ask about their family, um, you know, and I try to relate to me, tell them about my son to relate to their children, our parents, um, ask them where they’re from if I’ve traveled there. I always apologize that I can’t speak their language, that we have to rely on a translator.

Again, I’m lucky I’m a great translator who is warm with the patients, but I try to show my human-ness. Sometimes I tell them about my cancer so they can understand that I, that I am relating to them. Um, so I try to use those elements so that I’m a human-to-human relating to them so that they can understand that I’m not a provider up here and they’re a patient, that we’re on an equal playing field of … My job is to help you, and many times I’ll say to them, tell me how I can help you.

Despite high rates of screening, why are Black women less likely to be diagnosed with early stage breast cancer? 

This is a question that’s dear to my heart because I work in inner city Hartford and take care of a lot of, uh, Black women, and it’s the data, it’s very clear: 33% of Black women, African American women, women from the the Caribbean develop breast cancer under the age of 50. The U.S. Preventive Services Task Force states don’t start mammograms until 50, and many of our family physicians in this area embrace that because they don’t know that young Black women about breast cancer. The American Cancer Society recommends mammograms at 40, maybe 40 every other year. I am really happy to report in the, uh, annals of Surgical Oncology on October 3rd 2022 there was a landmark paper saying we should start screening young Black women at the age of 25. Now, I’m not saying mammograms, necessarily, but screen them for their risk and follow them. But we have these barriers for women of all ethnicities. The American College of Physicians says don’t do breast exams when you do a complete physical. 

Number two, um, women are discouraged and putting in quotes from doing a self-exam. You’re told to know your breasts but not to do self-exam, and so if if 33% of Black women develop breast cancer before the the age of 50 and they’re not having a breast exam, they’re not doing self-exam and they’re not getting mammograms, a third of those women are not entitled to early diagnosis. And, the result is 50% of Black women develop, are diagnosed at the point where the breast cancer has already left the breast. So, thus, now there is an element of biology. Black women tend to have a more aggressive form of breast cancer biologically, but an article came out last October from Cornell Weill Medical Center, uh, in uh, New York that says if mammograms are done, that will supersede the aggressiveness of the disease. And I don’t think you have to have a paper or research. It’s common sense. If you’re going to have an aggressive cancer, let’s find it early. Let’s find it small, before it’s spread beyond the breast. So, this is, um, I could go on for the remainder of this conversation about this but but I won’t, but I feel very strongly. I’m very glad you, uh, brought this issue up. In health care across the board, we talk about risk stratification. If my mother had a heart attack at 42, I should be screened for heart disease. Women of Jewish Ashkenazic descent have an increased risk of being BRCA positive. Screen them, young Black women and equally young Latino women or Hispanic women also develop breast cancer young, so all I’m asking, and I’m not alone, there are 14 different institutions around this country that feel the same way about screening at younger ages. All we’re asking is look at a woman’s risk and let’s screen her appropriately.

Why is breast cancer the most common cause of death from cancer among Hispanic/Latina women? 

I think that the language issue is huge and an inherent trust mistrust, you know, um, if a Latino woman has been mistreated by a health care provider in the past, how how is she to assume I’m not going to do the same? So we have to break down those barriers. You use the term far better than I, being human being human with people, trying to find the common ground. Um, healthcare access, uh, culturally, if women don’t feel comfortable touching their breasts and self-exam, time with your provider. That is such a commodity that’s undervalued, and it’s so important because I think you can’t build trust without time. Whether you’re with your primary primary care physician, health care coverage. Women who are coming into the country and not understanding the health care system, but let’s talk about there are a lot of Hispanic women in this country right now and have been here for years and how can we make them more comfortable, more willing to trust us?

And the same factors we talked on before, but but I think what’s important, and I love outreach. I love outreach to all different groups and what has been documented clearly, and I have looked, I’ve looked at the research and this is, programs like our breast programs need to have outreach workers that are culturally sensitive. Usually should be someone in the community that’s already trusted from a community group or a church organization, and then equip that woman or man, or regardless of who they are, with the facts, so they can be in the community, because they’re going to be more credible than me, right? I think if they can speak the language, so I think we have to think out of the box. It doesn’t isn’t just in the in the room with the doctor and the patient, although it is my responsibility to learn how to be more trustworthy. But, we also need to think out of the box. How we can bring women in from outside the community and how we do that is, uh, with outreach workers who are trusted, speak the language and understand the culture, and that’s really important, and there’s data to support that.

How can women without access to a healthcare provider or health insurance get medical advice and care?

Well, there are community health centers all around the country that are available. Um, I’ll speak to my program here but I think this can be duplicated. Multiple programs in the state of Connecticut and all across the country. October’s Breast Cancer Awareness Month? Listen there, I cannot believe there aren’t multiple institutions in each city in each town that provide free mammograms. There are donors that provide these free mammograms, and I think that it in women need to be proactive in saying, I don’t have a doctor, my mother had breast cancer, I haven’t seen a doctor, where can I get a free mammogram? And, um, probably each state has a resource, a number, or but but they need to be aware because we sometimes have too much money that we have so many free mammograms available and we’re not utilizing the times, but a lot of people who are philanthropic who have been touched by breast cancer provide funding and I can’t speak to specifics of other places but I know we do it here, and there’s also what’s called the CDC program. It’s a federal funded program for women to be able to have pap smears, as well as breast exams and mammograms, and that is national. Not all hospitals have the CDC program but it is um, uh. in I’m sure it’s strong in in each community but it’s available across the country.

What is the most important advice for someone with advanced breast cancer? 

I think that it’s important to always hang on to hope and to define what gives value in your life, which is really probably for all of us, relationships. It’s not things or money, it’s relationships. And before we have advanced cancers or early cancers, we need to cultivate our relationships. I like to say life is like a time, a pie chart. There’s only so much time for each thing, but I encourage women to take care of their own health, cultivate the relationships, and then if they’re diagnosed with advanced breast cancer, to counsel them to turn to their faith to help them through it, turn to their friends and their family. Um, you know, any of us could our life could end today crossing a street, so life is not infinite, and despite what I said at the beginning of this interview, it is finite and make the most of all that time. And if you have advanced breast cancer, find a provider that you trust. And if the first one you don’t trust, find another one that you feel comfortable with, that you don’t feel that there’s bias, but you that key word, trust, bring your family and friends in with you for the discussions and then and as a as a community of family and friends with your provider, a whole community, move forward to cherish every day you have with those people that you love. Embrace the therapies. Make sure you believe in those therapies. If not, again I’m going to be redundant and say get a second opinion and enjoy each day that you have because even if you don’t have advanced breast cancer, that’s what we should do, and too frequently we take each of those days and relationships for granted.

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