Listen to this podcast episode with a healthcare professional interviewing a patient advocate and early breast cancer survivor covering topics most important to patients including preparing patients for their journey through early diagnosis and multiple treatments and into survivorship. Learn from these insights on how to improve patient care and provide adequate information and resources to achieve equitable outcomes across all patient populations.
A patient advocate/cancer survivor and a healthcare professional discuss key topics including early breast cancer diagnosis, role of self-agency in pursuing optimal cancer care, encouraging trial participation with patient testimonials, and other considerations for the patient care journey such as appropriate screening, follow-up encounters for questions, guideline-based treatments, and side effect management.
Participants
Kristen D. Whitaker, MD, MS
Breast Medical Oncologist
Medstar Georgetown Center Institute at Washington Hospital Center
Assistant Professor of Medicine
Georgetown University School of Medicine
Washington, DC
Asha Miller
Founder, Asha Miller Creative
Patient Advocate and Consultant
Patient Experience and Health Equity
Breast Cancer Veteran
Columbus, Ohio
Link to full program:
https://bit.ly/47XIKV7
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This transcript was automatically generated from the audio recording and may contain inaccuracies, including errors or typographical mistakes.
Jerfiz Constanzo: Hello, and welcome to this Decera Clinical Education Oncology podcast. I’m your host Jerfiz Constanzo. Today’s episode is part of a larger educational program on “Patient Voices, Expert Guidance: Personalizing Treatment of Early Breast Cancer in Patients at Risk of Health Disparities and Common Comorbidities.” African American women as well as underrepresented women of color continue to experience significant health disparities, including lower adoption of guideline concordant care and suboptimal outcomes compared with other patient populations across all subtypes of breast cancer.
These disparities are even greater in patients with rare tumor subtypes and among those with nonactionable biomarkers. In this episode, a patient advocate and early breast cancer survivor and a breast oncology physician share their insights on key themes regarding unmet needs for pursuing guideline concordant care, resources on biomarker testing for patients and healthcare professionals, approaches for mitigating and managing treatment-related adverse events, and how to best communicate with the healthcare team to make the most of a given therapy, post-treatment survivorship groups, and other resources.
Asha Miller: Hi. Thank you for having me on. I was diagnosed with a stage 3B ER PR positive HER2 negative breast cancer at the age of 33 years old. I found the lump at 32, and my children at the time, my daughter was three, and my son was eight years old. For me, it was a very terrifying experience, I would say.
I identify as a Black or mixed woman, and that for me definitely shaped the way that I experienced my diagnosis and my care, and the way that I just had to move through the healthcare system. At the time, I was a young mom, and I had my two kids, and everything about my diagnosis, it just felt like there was a huge sense of urgency, a lot of fear, and a lot of need to understand what was happening in my body, while I was also trying to just stay present with my family.
It was a time where it felt like there was a lot going on. I was terrified. I found the lump myself and went to my doctor's office, and told her about it. She told me that everything looked great. Nothing seemed to be wrong or concerning about it. It was so tiny. It was about half a centimeter is what I felt and what she felt.
She sent me for an ultrasound just because she thought I just felt a little bit concerned. Not that I thought it was cancer, but I just thought, well, I just do not want anything wrong or bad happening in my body. I had a scare the year before that really made me conscious of my health. When we went for the ultrasound, everything went well.
They called back, and they said, everything looks great. We cannot be 100%, but nothing looks concerning on your ultrasound.
It was the one thing that she said, we cannot be 100%, that really got to me. I said I just want to be 100%. Let us just go for the biopsy or whatever the next step is. We went for the biopsy. I just remember feeling almost silly because it was a half a centimeter, nobody was concerned, but I just felt the need to advocate.
The breast surgeon, who had been practicing for more than 30 years, he walked me through the entire thing, and he kept pointing out that if it was something bad, it would have had a shadow or it would look like this or that. At the end, I said, I know you probably cannot tell me, but what do you think? He said, honestly, I just think it is a little cyst. I think I got most of it from the biopsy. It was so tiny, and he seemed to have no concerns. I walked out of there with no concerns.
I took a couple pictures, actually, of the instruments because I thought I will send it to my parents as something that was scary, but ended up being great.
Two days later, on September 28th, 2017, at 8:00 o'clock in the morning, when I was putting my son on the bus, and my three-year-old daughter was running around playing in my house, I got a call from that same breast surgeon. He was so shocked that he called me himself first thing in the morning when he got the results, and it said that I had breast cancer.
For me to say that I left my body. It felt like I was hovering over myself because it felt so surreal that I was diagnosed with breast cancer. I was diagnosed with ER/PR positive, HER2-negative breast cancer, DCIS, and IDC. We all really thought it was very early stage because I had found the bump myself. I was not feeling sick. I was not losing weight. I was not hurting or growing as far as I could feel. It ended up being stage 3B, because the cancer had already migrated outside of my breast to my lymph nodes, as well as it was calcified across my chest wall in a bigger area. A huge part of why I do everything that I do is advocacy. It saved my life.
Jerfiz Constanzo: Next, Kristen Whitaker, a breast oncology physician at MedStar Health in Washington, DC, shared her thoughts on the current state of early breast cancer health disparities in the United States.
Dr. Kristen Whitaker (MedStar Washington Hospital Center): Asha, thanks so much for sharing this story. I think what you just shared highlights why it is so important to be an advocate. It really resonates with me, this story, because I have heard it many times before, especially from my young patients with breast cancer, where essentially they presented a concern to a doctor and were told, oh, this is probably not cancer. You are breastfeeding. It may be a cyst. It is everything but cancer.
Jerfiz Constanzo: As illustrated by this discussion, shared decision-making between the healthcare professionals working with patients can play a pivotal role in improving access to care and delivery of guideline-concordant care.
Unfortunately, for many young women, it comes back as cancer before we have even started doing any cancer screening with things like mammograms. I wonder if you felt, as a Black woman, that was part of the reason why you needed to advocate a little more strongly for yourself.
Asha Miller: I definitely think that it played into it. I do not think for every instance I do not think for every single encounter I had with my team or people throughout my cancer diagnosis. I definitely think that there were key moments in my diagnosis that being a Black woman was important.
One of those times was when I had to fire my first oncologist. First of all, I did not even realize that I could. When you grow up, you do not think about firing your doctors. But when it comes to life and death, if my doctor does not believe that I am in pain and then does not follow up with the pain medicine that I need, with the care that I need, that could be a matter for me of life and death.
It can also be a matter of my mental health, of the way that I show up for my family, the way I show up for myself. I had a reaction to one of the drugs that helped to boost my white blood cell count. Now, I hear, because I am a patient advocate within the breast cancer community, that is a very normal reaction to that drug. At the time, I had no idea.
I sat there thinking I must be crazy. She was questioning, why are you in so much pain? You should not be in that much pain. She was questioning the medical staff at my local hospital because she was about 45 minutes away as to why I needed that much pain medication. They had to be the ones to advocate also for me and to say, no, she is not drug seeking. This woman is in excruciating pain. She is passing out from the pain. That was definitely an incident.
When you think about radiation, it does affect us in different ways because of different skin types. I never heard that. Not until my mom was diagnosed with breast cancer 2 years after I was, and she had those talks with chemo and radiation and sit and realize that is not tailored to our experience. Many times, it is tailored to the Caucasian experience, and I want my oncologists to see me as a whole person, not just the cancer part of me, but the entire part of me. The mother part of me, the Black mother part of me. Every single part of me, because I feel like that is how we really get the care that we need.
Dr. Whitaker: Asha, you made so many great points. As a breast medical oncologist, I find it very heartbreaking when someone says they feel like they were dismissed and their needs were not being met because it is a terrifying experience, and it is an experience that even if someone tries to prepare you, they are going to be some unknowns. Those unknowns to a patient are very scary. I think we always have to make sure that as clinicians, we are providing adequate support.
I applaud you for being this advocate for yourself and really taking the steps to make sure you found a medical oncologist that did listen to you and did provide the care that you need.
Moving into this idea of the care that you needed, can you talk to me a little bit about what type of treatment you got for your breast cancer? I am assuming you had surgery. Then I wonder if you had other treatments, such as standard of care treatments that may have been guided by biomarkers, whether you receive chemotherapy plus radiotherapy.
Asha Miller: When they realized that it was so advanced and that it was grade 3.They started with chemotherapy. I had two different types of chemotherapy, the Red Devil. I had my double mastectomy right after the chemotherapy ended. I had 36 rounds of radiation. I had about five boosts at the end, where it is concentrated. Then when that started to heal, it was time for my implant instead of the expanders.
I was so excited because the expanders are so brutal. They are like cages under your skin. I got my implants in, and I thought, okay, this is it. I am done with surgeries. Soon after that, I started getting residual bleeding because of the chemo, they said. I just had really long periods, and I could not stop, and it lowered my iron count. So because of that, first, they tried uterine ablation and then eventually hysterectomy.
When I was healing from the uterine ablation surgery, I found out 4 days after that that the implants that were just put in 4 months earlier were recalled for causing another type of cancer. For me, that was devastating because, up until that time, I felt like I did not have to face the loss of my breasts directly because I can look down at those cages under my skin and try to tell my brain there is not a lot of loss. It is okay, everything is going to be fine.
I think that out there, there is a lot of information for us patients about chemo or even about a double mastectomy. For Black patients, I googled and googled to try to find pictures of Black women with a mastectomy or Black women with radiation burns, trying to see, what could it look like? I was hard-pressed to find any of those pictures. That is one of the main reasons why I started to share my pictures. Started to share my experience and advocating that way as well through storytelling, because it helped other Black patients to feel less alone when they were going through the treatments, especially the treatments that many times we do not see the pictures or get the information that we need.
Dr. Whitaker: I think your last point is a very important one. This idea that we see many Black women with breast cancer. We see Black women having disparities related to mortality from breast cancer, but yet we really see none of our recommendations being tailored really for Black patients. I think what you just spoke to really highlights that that is a huge need still.
I wonder a little bit when I hear you talk about your experience, much of it seems like it was a very rushed let us get to the next step. You have a stage 3 breast cancer. You are young. We know it is aggressive. Do you feel at any point during your treatment that your healthcare team actually took the time to break down step by step, what you were going to experience, and really provide you with some resources so that you knew when you got chemotherapy, this is what you should expect, when you move to radiation, this is what you should expect? Could you just speak to that a little bit?
Asha Miller: There was this chemo class that you had to take. I think it was more like a radiation talk, but the chemo was definitely a chemo class, and there was just so much information that no one in the medical side of things really stopped to think, we just bombarded her with a plethora of information. I think there needs to be a follow-up after that to really answer questions that are specific to her. I think it was like, well, you can just send a message in my chart. Now on to the next big information dump. It is a lot for us to process as patients. I read a lot of medical papers and reviews, and things like that. For many patients, they are not necessarily doing that. I still wanted to hear from my doctors what was specific to me, not from a trial that I read about, but specific to me.
I feel like there was not a strong emphasis on clinical trials in my experience. I think a part of that just comes down to how those conversations are introduced because trust in our medical team is everything. I feel like if there had been more intentional conversation about some of these topics, more time, even more transparency, I think that I would have been more open to exploring different options outside of the standard of care.
I feel like in terms of decision-making, I would not say I felt fully included at the beginning. I feel like I had to grow into that role of advocating for myself, speaking up, asking those questions.
Dr. Whitaker: That all is, unfortunately, an experience that many patients really do have where they feel that they are bombarded with information. I agree with you completely. My portal message is not the same as sitting down with your doctor and having a conversation. I think it is unfortunate that we treat them like they are interchangeable things here.
Did anyone talk to you at any point about clinical trials, either before going through surgery and radiation, after you finish that at any point? Was that a conversation you had or something that you had access to where you were treated?
Asha Miller: I just remember one conversation with my oncologist about that. It was very brief. I did not get a lot of information, and I was just super hesitant. I think because of the history in this country, and I am a writer, and so I did a lot of research writing a paper about the history of this country when it comes to the medical community and black patients. I started to reach out to those that are Black women and men that are within the clinical trial community to see how is it different? Is it safe? That was not done from my oncologist. No one sat down and said, this is why it is safe now. I understand that this might be scary, especially because of the history in this country.
That is why I feel that seeing your patient as a whole person is so important, because I think if those conversations were had with me, then I would have had a different experience, and I would have done the clinical trials, but I did not at the time because I did not have the education.
Dr. Whitaker: I think that is a very important point. We certainly have a lot of medical mistrust in the Black community for very justified reasons based off the history of mistreatment of our Black patients and research. Addressing that concern, like you said, is very important. I think that probably rarely gets done, but I think it is a huge step in terms of building rapport and establishing trust and making our patients realize we do understand you are unique and your experience and your thoughts to a clinical trial may be different than the White patient next to you or the Asian patient next to you. I think that is absolutely something that is critically important that we certainly need to do better with.
Asha Miller: For sure.
Dr. Whitaker: Sounds like you received this, what we call dose-dense AC-T, you referenced the Red Devil, which is that doxorubicin chemotherapy. Did you have any other medical problems that may have needed to be taken into consideration, like high blood pressure, diabetes, autoimmune disease, any mental health conditions, any of those things that may have needed to be taken into account?
Asha Miller: The year before I was diagnosed with breast cancer, I was supposed to go in for a regular surgery, a laparoscopic surgery to take a cyst off my uterus. Something went wrong in the surgery, and I woke up missing an ovary. What was not told to me at the time was how that impacted my mental health. I went into a really deep depression, suicidal ideations. I was not at all myself. It was a dark time.
Coming out of that, I found fitness. I found my mental health, my therapist at the time. It was wild that just two months after everything settled down, I became a fitness instructor. I got really strong that I found the bump under my arm. I was in the best place mentally and emotionally, and physically, I feel like at that time when I was diagnosed.
I think the thing that many of us do not realize is the mental impact that cancer does have. While I did have a therapist and I was able to speak to him the morning actually that I was diagnosed, many of us have been diagnosed with PTSD, myself included. For me, it was through the cancer diagnosis. It was other diagnoses that happened after the fact then prior to. It was depression or anxiety, and then also I was recently diagnosed with vitiligo, which is an autoimmune disease or condition that definitely has an impact also on my mental health. That has been after my diagnosis with breast cancer.
Dr. Whitaker: Asha, you bring up a very important point about the idea that mental health is a critical component to address when you are taking care of a patient with cancer. It sounds like again, you have been a great advocate for yourself throughout this whole breast cancer journey.
Do you feel like outside of your self-advocacy was the topic of how you were coping with your diagnosis, how your mental health was doing during the time you were treating your cancer, was that addressed by your healthcare team?
Asha Miller:
It was never addressed. I did not know anything about the holistic mind, body spirit type of approach with oncology. I know that there are some that do that now, but I have never experienced that. That is something I advocate for, absolutely.
The mental health sheets that you are supposed to fill out in the doctor's office, I do not fill them out anymore. The reason is because when I do not fill them out, I am able to when my doctor comes in, she says, oh, you did not fill out your mental health sheet, and I am like, yeah, I would like to talk to you about my mental health, and then I can fill it out. Because I think it is important not to just rely on a sheet that we see little numbers and check boxes, but to actually connect with our patients and hear how they are doing mentally. Because I feel like when we hit that, we can also then treat them physically even better because how do I know what is going on in my body when I am depressed or anxious? The mental health component, I feel like, is a huge part and should be part of standard of care.
Dr. Whitaker: I love the strategy you employ with getting that conversation going with your healthcare provider by not filling out the forms. Then they are almost forced to talk about it with you. I think that is a great strategy.
When we think about mental health, one thing I will tell you, I find challenging as a provider that takes care of about 70% of Black patients where I am. I still see a huge stigma around mental health, especially in our Black communities. Many times when I talk to patients that I can see visibly struggling, they are crying in my office, they are tearful every single visit. This is something that I always address in every new patient when we talk about this, because I just imagine what this may feel like for patients, and trying to cope with this. I do get a fair amount of resistance, and more so in my Black patients, when I suggest, we have a cancer dedicated psychiatrist, or we have therapists, we have group therapy. I get the response, well, I do not think I really need that now. I think the other thing we see in our Black communities is a big reliance on faith, which of course, I always advocate for that. I also say perhaps there is a role to also incorporate some of that. I will say that is the challenge that I have seen a little more uniquely in some of my Black patients, that it is this idea that I am strong. I am going to get through this, and I am not really going to take these additional resources even though they are there.
I agree with you that it is critically important. When I am able to actually continue to address the issue, and I think again, this comes down to building trust and rapport with your medical oncologists, some of those patients who are resistant in the beginning actually do come around, and they thank me at the end of their treatment. This made such a difference when you connected me with the psychiatrist, or I joined the support group. So critically important for sure.
Asha Miller: I do think that you are correct when it comes to mental health in the Black community. That is one of the reasons for me I created support groups where I am. I have made it a point that at least 70% to 75% of the room needs to be women of color, specifically Black women.
When you see the disparity that we are dying 40% more than our White counterparts, I was like, where is the support? If many of us are not going to mental health spaces, how can we support each other?
That has been huge because now I do a mental health Wednesday, every Wednesday when I go to my therapist, and I post that, and I remind people, especially the Black community, like, hey, I just got out of my therapist. These are the things that I am working through. This is the stuff that is important. I hope that you take that step too. I think that when we, as patients and as clinicians, can both work together to spread that word, it is going to make a huge difference.
Jerfiz Constanzo: Asha and Kristen also shared their experience and feedback on early breast cancer diagnosis, including resources and education on biomarker testing.
Dr. Whitaker: Asha, one question that becomes critically important when you are diagnosed with a breast cancer at such a young age, I know you said you were diagnosed in your 30s with your breast cancer. You also referenced your mom had developed breast cancer after you. I am not sure if you had more of a family history so you can speak to that. I wonder, were you offered any genetic testing at any point during your cancer journey?
Asha Miller: I did receive genetic testing. That was something that was offered to me because at the time when you talked about the quietness and the Black community about mental health, there is also a silence about our family medical history. I am from an immigrant background, and so both of the sides of my family did not want to talk about it. They did not want to talk about who had what because there was so much shame attached to that.
At the time, I did not know I had any family history. I said, no, I do not have any family history. I just turned 33 years old. I am healthy, and so I do not know. They took it, and I came up back with a VUS, a variant of unknown significance. They said they did not have a lot of information. I can keep checking back in every couple years.
When my mom got diagnosed 2 years after me, that is when everything came out. Oh, well, granny, she had gynecological cancer. She died of that. Her sister died of breast cancer, and everything started coming out. Oh, well, we do have a family history of breast and gynecological cancer.
When my mom got diagnosed, I asked her if she did genetic testing, and her doctor actually told her that he did not think she needed it. I was like, mom, you are absolutely coming to my doctor. Because I just felt like, absolutely, she should get genetic testing. I got it, and the more of us that get it, especially within my family, I just felt like there would be more information that they can pull from.
Dr. Whitaker: Asha, you are highlighting some really key points here. Your point about a lot of genetics research and specifically focus in Black patients. This whole idea that family history is not shared. It is a very prevalent and true experience. Black patients do not know what their grandma had, what their aunt had. Sometimes, maybe not even what their mother had. I think that presents that first challenge, and even knowing your family history to see maybe even before you get diagnosed with cancer, should you have had some genetic testing that could have maybe prevented a cancer diagnosis?
You highlight the importance of us really having to maybe find a way within Black communities to more freely share our family history and realize there is not a stigma. There is nothing to be ashamed about, but it is very useful information that actually can change the trajectory related to cancer within the family. You highlight that point.
I wonder it sounds like your mom was a bit challenging getting her genetic testing. It sounds like for you, though, it was something that was brought up by your clinical team. You did not have to be the one to say, give me genetic testing. They told you that is something they recommended.
Did you have any challenges with things like insurance coverage? Did you actually meet with the genetics provider, or was it done through your surgeon or medical oncologist?
Asha Miller: I actually met with a genetics provider. At the time, the insurance that I had, it was done through that insurance. For me, that was one of the more easier, I think appointments than some of the others that followed.
Jerfiz Constanzo: Adverse events are top of mind for many patients undergoing treatment for cancer, but particularly so for those with early stage disease that may still be considered asymptomatic. Asha shared her experience and feedback on managing side effects that presented while receiving anti-cancer therapy and other lingering effects following completion of treatment.
Dr. Whitaker: Asha, I know we touched on this a bit, but I do think it is important to highlight. I think that the time of diagnosis, at the time of treatment initiation, there is just huge information overload. You referenced this chemo teaching class, so many follow-up questions that came after that.
It sounds like you really did not feel like you were adequately prepared to start the chemotherapy. Would you agree with that assessment?
Asha Miller: I feel like I was as prepared as I could be because there was so much information. I was trying to think of questions. Everybody is like, oh, if you have any questions, just ask. The truth is, many of us do not know what to ask. That is something I try to really walk alongside patients now is to say, hey, if you are going to a certain appointment, if you need any resources, help, questions, I have a list of questions for different appointments, whether that is surgery or radiation, or chemo, just so that they have questions. Because many of us, we are grateful that you are open to hearing questions, but we do not know what to ask. I think that is across the board for many patients.
Dr. Whitaker: You describe the experience, I think, where you were getting the white blood cell factor growth factor. It sounds like you have pretty diffuse, intense pain. It seems like, one that was not something necessarily you were told to expect; and two, when it did happen, maybe you did not get the best support and guidance in terms of how to manage it, from what I heard you say.
Could you speak a little bit, Asha, to what you think the healthcare team can do differently to guide you once you start the treatment? What should they be telling you to do when you have the side effects? What access to resources did you have from your healthcare team to begin with?
Asha Miller: There was not a lot of resources. I think the biggest resources that many of us get is our aftercare sheet and maybe some printouts. Then, also access to MyChart.
But I do feel like it is highly important to make sure that, again, the mental health part, the anxiety, or we call it scanxiety, that we develop it is overwhelming at times.
The support group that I was connected to was not even remotely within my demographic of age, race, or experience. I initially, through the hospital was like, I am never going to a support group. I am just going to be over here by myself. When I got to meet individual patients and was able to speak with them, and we created our own group of people, when I got to meet different support groups that were online, and then those that were meeting in person that had a broader experience, it was a huge change in the way that I showed up, even for myself, for my family and for even my treatment.
I think those are probably some of the top ways that clinicians can really engage and support their patients when it comes to those topics.
Dr. Whitaker: The one thing I wonder when I hear you talk about outside support groups, how did you find those?
Asha Miller: Some of them I really found through Instagram, through my online platforms. I started to write on Instagram. That is how I got into all of this. I was just like, I am going to write. I have a gift for writing. I love to write. I was my way of connecting to those within the community but also giving an ear to those that are saying, hey, we have no idea what it is really like.
For me, it was reaching out to different organizations, then when I went online. Then they started reaching out to me and connecting with me as well.
When I found, especially those organizations like the Breasties or For the Breast of Us, that are specifically for women of color, those that are for all different ages, they have fun activities. We are not sitting around with crackers and juice and saying, hi, I am Asha, I was 33. I have ER/PR positive. It begins to feel like an AA group instead of like, this is my life I am living, I want to thrive. I was diagnosed with something, and I am trying to just find that support.
Jerfiz Constanzo: Key challenges for adoption of guideline-concordant care for many patients remain cost of anti-cancer treatment which can present in the form of high out-of-pocket expenses or copays for medication and additional laboratory testing, and social barriers for the patient such as fear of missing work, lack of social support, and childcare expenses.
Dr. Whitaker: There is really a huge conversation around the financial burden of cancer care. I wonder, in your personal experience, did you run into challenges related to insurance coverage for any of your medications, any of your testing you may have received? How did you navigate the cost aspect of your cancer care in terms of the impact that may have had on work and finances related to that?
Asha Miller: Yeah, this is a really important question. I would say it is especially important for the AYA, the adolescent and young adult population of cancer patients, because costs has impacted my life. It impacts so many of our lives. I think that it is a unique and more even difficult challenge when it is done in a significant part of your life, when you are like, okay, I am going to be saving up for a house. I have little kids at home that there is a lot more burden of cost that is around your life. It is that time where you want to take that step up to save money, and to want to do fun things, and to travel. When a lot of that money is tied up in, okay, can I pay for this medication? Can I do this treatment? How much does that scan? If I have great insurance, but then there is also copays, what does that look like?
One of the unique things that happened with me is that I had a divorce right around the time after my chemotherapy, my radiation, and my initial surgeries, my first surgeries, I had my divorce. While it was amicable and he kept me on his insurance as much as possible as long as he could, eventually, I had to come off of it.
That was when I came face-to-face with the real cost of cancer. The hardest time for me was walking in, I had really bad headaches, and I was not sure what was going on. My oncologist was concerned because of other side effects and things that were happening in my life and in my body. He was really concerned about the headaches and the prolonged nature of them.
I walked into my doctor's office, and they sent me to the financial department because they said, you are going to need to do this scan, that scan, and I did not have any insurance. I was in between trying to find a new insurance. I did not have any. I actually had to sit there. I remember just being in tears and saying, I want to know if I have cancer in my brain, but I do not have the money to cover all of these scans. They were just going to be an exorbitant amount.
The resources were not laid out clearly. The help was not going to be sufficient. I actually waited almost 2 months before I was able to do that scan under state insurance. Now I have it. I am so grateful for it. That window of time for me, those couple months, was something that many patients are going through over and over and over again.
I am still a young mom, and I want to still travel and do all these amazing things with my kids and with my life, but I am saddled with thousands of dollars in medical debt. That is the only debt I have. Think about if that cost and if that was not there, what other things I could do with this life that I have been given a new lease on life. We want to do all the things, but we are many times saddled with thousands of dollars in medical debt.
I think that is a huge barrier for care. I think the conversation needs to be clearer. The help and the resources need to be something that the clinicians are very aware of so that the patients like myself can get the scans and the care that we need.
Jerfiz Constanzo: Asha and Kristen also discussed other critical information that could benefit patients with early breast cancer, elaborating on key actions that all underrepresented women of color can consider for taking charge in their cancer journey and to prepare to live a full life after a cancer diagnosis.
Dr. Whitaker: I am curious if there is just any final thoughts you have on what may have been helpful as you navigated this experience of your early-stage breast cancer, especially at such a young age. Oftentimes, the other thing that I think is important and often neglected in the conversations is, what is it like to become a breast cancer survivor, to transition from that active stage of treatment to now a survivorship mode?
Asha Miller: That is one thing that I did not realize when I was diagnosed is that cancer is a lifelong diagnosis. I just thought, I am going to put my head down, I am going to deal with it like many of the things that I have dealt with in my past, and it is going to be over, and I am going to move on. But not realizing that there are huge long-term effects that happens in what they call and what we call survivorship.
I like to call myself a breast cancer veteran versus a survivor, just because so many times when we think of survivors, we think of those who survive, maybe a fire or a car crash. We are never asking those survivors to go back to what I call the scene of the crime, to relive those experiences. We are never telling a fire survivor to say, hey, can you sit in the fire, smell the smoke, and now hold your breath. Okay, now breathe. Okay, do not freak out. It is not that critical. Just stay in the space that burned you and hurt you, or crash a car every once in a while. We do not ask those.
Many times when I think of the word veteran as there is an honor and there is a repetitiveness of it, like, hey, you have to go back, and you usually have to go back and be faced with the trauma over and over again. I think that feels more authentic to me. I have said it to many breast cancer survivors, and they felt the same.
That term of survivorship, while I understand it, it is also feels to the outside community and sometimes to the medical community as, oh, okay, so we are done with active treatment. You go to seeing me once a year, we are like put out to pasture. That is the scariest time for us because now we are not seeing you. We are not hearing what the next steps are. We were just on a schedule, and now we are just left to think, is the cancer completely gone? Are there remnants of it? What is that cough? What is that headache?
Yet we want to live our lives. We want to thrive. We want to dance and go on trips, and we want to experience milestones with our children and our friends, and family. We do not want to have that nagging feeling. It is balancing that fine line of being obsessive enough that you do not miss something that can kill you, and a recurrence happens, but also not so obsessive that you miss out on the most beautiful moments of your one beautiful life.
For me, transitioning into survivorship is like its own experience. There is this expectation that once treatment ends, you go back to normal, but there is no going back to that normal because you are learning to live in a whole new body with whole new awareness. A lot of times, we have these lingering physical and emotional effects. For me, support during that phase is just as important as during treatment.
For me, one of the things that I would say for healthcare professionals is that communication, cultural awareness, and taking the time to truly listen to your patients can completely change a patient's experience. For patients, especially Black women and other underrepresented communities, I just want to let them know that your voice matters. Our stories matter. Asking questions, being your own biggest advocate is not being difficult. It is being informed. You are worthy of asking questions and getting an answer. You are worthy of that time. You are worthy of your one beautiful life. You are worthy of being informed and educated on your own diagnosis.
Jerfiz Constanzo: Recognizing and listening to the unique needs of African American women and other underrepresented patients of color can potentially help bridge the gap between awareness and effecting change.
Take the next step in learning about practical strategies throughout other educational components in this program to configure early breast cancer treatments to be equitable, overcoming critical barriers, and better meet the needs of at risk populations.
I would like to extend warm thanks to Asha Miller and Kristen Whittaker for taking the time to talk with us and share their perspectives in the care of Black patients with early breast cancer in the United States. And many thanks to our listeners for joining us.
As a reminder, to learn more from our educational program titled “Patient Voices, Expert Guidance: Personalizing Treatment of Early Breast Cancer in Patients at Risk of Health Disparities and Common Comorbidities” please click the link in the show notes. Also visit the overall program page to take advantage of certified short educational modules and patient resource on the Decera Clinical Education website.
As always, thanks for listening!