The Latest in Breast Cancer with Dr. Lola Fayanju at San Antonio Breast Cancer Symposium (SABCS) 2022
Interviewed by:
Stephanie Chuang
The San Antonio Breast Cancer Symposium (SABCS) provides the latest information in research, prevention, diagnosis, and treatment of breast cancer.
Dr. Oluwadamilola “Lola” Fayanju is the Helen O. Dickens Presidential Associate Professor in the Perelman School of Medicine at the University of Pennsylvania, the Chief of Breast Surgery for the University of Pennsylvania Health System, the Surgical Director of the Rena Rowan Breast Center in the Abramson Cancer Center, and an innovation faculty member at the Penn Center for Cancer Care Innovation (PC3I).
Dr. Fayanju’s focus as an academic breast surgical oncologist is on health disparities, patient-reported outcomes (PROs), and aggressive breast cancer variants.
Dr. Fayanju sat down with The Patient Story to discuss some of the latest news coming out of SABCS 2022.
discusses breast cancer, PROs, the language used around racial health disparities, and the importance of conferences like SABCS.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Introduction to Dr. Fayanju
Dr. Fayanju: I’ve always been interested in women’s health. [I was] one of those kids who always wanted to be a doctor and actually was really leaning towards OB-GYN. [I] was always interested in women’s reproductive rights.
Then when you go to medical school, you find out which parts of the body kind of attract you more. I have to admit, I was actually really attracted to surgical disease, found myself really gravitating towards surgical disease, and really got interested in general surgery.
As often happens, you are drawn into things because of the patients who move you and the mentors who inspire you. I was really moved by a patient who was a lot like me when I was a third-year medical student. She was about my age. She was actually also Nigerian.
She was presenting with a large triple-negative breast cancer, and she was alone. She had no family in the United States. I actually remember her starting to cry as I was examining her. I was seeing her in a safety net clinic. That is a clinic that was staffed primarily by trainees overseen by altruistic attendings at my medical school, who then connected those patients to tertiary care.
[I had] a wonderful couple of mentors, including Julie Margenthaler, who is the Chief of Breast Surgery at Washington University, and Ira Kodner, who was a colorectal surgeon but became very famous in the world of medical ethics, as well as care for the underserved.
Working with them, [I came] to realize that patients who presented through the safety net clinics were more likely to present with delayed care and more likely to present with a more advanced stage. That really launched, I would say, my career as a health services researcher and as someone interested in care that really reflected disparities in our society and our ability to provide equitable care.
I became interested in surgery because of the disease, I became interested in breast cancer because of the patients, [and] I also became inspired by having great mentors.
It all seems very linear, finding myself here now as a breast surgeon, but it was actually multifactorial and looks more clean and neat than it felt in the moment. But here I am today with the privilege of being a breast surgeon.
How did you feel meeting that patient who had delayed care?
I felt anger. I felt frustration. I felt the beginnings of despair, but then held myself back, thinking, “How could I make a difference?” Her experience and my experience working with the safety net clinic there actually led to a research project.
What was exciting about that [research project] is that it actually led to a change in the way that care was provided in St. Louis. It used to be the case that patients who were seen in one of the clinics that were treating patients who had no healthcare or who are underinsured — those patients often had to go back to their primary care providers to get referred to the tertiary clinic to get cancer care.
In fact, through research that we conducted, we were able to demonstrate that this led to delays because of having to redo imaging [and] because of missed appointments. It led to a change through the St. Louis Health Commission in the way that care is provided for these patients.
For me, it was a way to show that research didn’t have to be something that was localized to the ivory tower. It could actually be impactful. It could actually translate into policy and into real-world effectiveness. That was really exciting for me.
The importance of SABCS and other conferences
The importance of conferences like San Antonio, ASCO, ACR, or Society of Surgical Oncology is that we who are engaged in the scientific process take what we learn and implement it in our everyday care.
The tragedy of it is that often it takes too long. We know that the average amount of time it takes for our innovation to be implemented in routine clinical care is about 9 years.
One of the things that are really exciting [is] the field of implementation science, which at my institution, Penn Medicine’s Abramson Cancer Center, we actually have a funded implementation science center, which I’m a part [of].
That works to bridge the disconnect between discovery and delivery to ensure that what is found, what is discovered, and what is innovated by scientists actually makes it to patients.
What I would say is important about San Antonio is one, announcing new medications, devices, or approaches to care that will make a difference in the lives of patients with breast cancer. Two, updates on trials that were announced in the past that we now know more about. Then, three, ways in which we can take knowledge that has been kind of assumed to be standard and how we can actually apply that and update that in regular practice.
[Here are] examples of each of those 3 things. One, we are increasingly weighing the results of trials that will tell us how best to manage HER2-low disease. That is patients who have some HER2 expression, but where they don’t rise [to] the level of expression that we used to think was needed to benefit from targeted therapy.
An example of the middle one is the reporting of our understanding of Oncotype DX as both a prognostic and predictive tool for helping us better treat patients with estrogen-receptor-positive disease.
Then a third example is a talk that I’m giving today as part of a panel on patient-reported outcomes. [PROs] are opportunities for patients to describe how they’re feeling, what symptoms they’re experiencing, [and] what psychosocial challenges they might have that might prevent them from optimizing their breast cancer journey.
Those are 3 ways in which conferences like this allow us to communicate new findings, update knowledge we already have, and translate information and approaches we have into the clinical realm for the benefit of patients. Those are some examples of why San Antonio is important.
HER2-low breast cancer
The way to think about it is we’re looking for more opportunities for treatments. I think of HER2 targeted therapy as really an ideal within oncology because it really has changed our ability to achieve pathologic complete response — that is, eradication of tumor prior to surgery just through the use of systemic therapy.
It really has represented a gold standard that we’re trying to achieve for other types of molecular subtypes. Really, [what] we’re trying to figure out more and more is which types of HER2-low can be treated with systemic therapy. In whom can we deescalate other types of treatment? We know that some of the targeted therapy is very hard on the body, and so that’s something that we’re hoping to learn more about.
What are the new emerging treatments for breast cancer?
One of the big trials that came out several years ago was TAILORx, which allowed us to understand how well Oncotype DX, which is a genomic test that allows us to understand whether or not women with estrogen-receptor-positive breast cancer would benefit from chemotherapy in addition to endocrine therapy in the adjuvant — that is, post-operative setting.
Yesterday, an update on that was provided. It was very important in that it showed that women who had low or intermediate-risk Oncotype scores did not benefit substantially from additional chemotherapy beyond just getting endocrine therapy, except for women who were 50 years or younger. If they had an intermediate risk score, those individuals had some potential benefit from getting chemotherapy.
Worse outcomes reported for people of color
What was an unfortunate finding within the study was that Black women had worse outcomes even when you controlled for other factors. The way that was communicated was, I think, in a way that unfortunately is often communicated when trials are described.
Black race was communicated as an adverse factor, which is really not the way in which we want to describe these types of outcomes in minoritized groups. We know that race is a social construct.
As Dr. Lori Peirce, a very prominent radiation oncologist at the University of Michigan and former president of ASCO, described immediately before that presentation, race is a social construct that nonetheless has power and it is notable that in African Americans for many years, there was the one-drop rule in effect.
It was used to justify the enslavement of children of miscegenation in order to keep those children enslaved. It is also used to withhold rights from people of Native American ancestry by having it be that you have to have a certain minimal amount in order to claim Native American ancestry and take advantage of certain rights that are ascribed to them through the U.S. government.
Again, the use of ancestry is often political; it is not biological. When we ascribe risk or we describe disparities that are observed in certain groups, we need to really tease apart when we’re talking about genetic ancestry and when we’re talking about the systemic racism, bias, and the structures that contribute to seeing untoward outcomes in those groups. That, unfortunately, was not really described in the relaying of those results.
Language around racial disparities in healthcare
\We should never use language that Black race is an adverse factor or Hispanic ethnicity is an adverse factor. People’s identity is not an adverse factor, even if we find disparate results in that group.
The way I would describe those results is to say that, unfortunately, we continue to find worse outcomes amongst Black women. This is an important subject of future inquiry that hopefully will be better understood if we deliberately target Black women for enrollment in these trials, as they continue to be under-included and underrepresented in clinical trials.
Why is there a lack of diversity in clinical trials?
Many of the women who choose not to participate in clinical trials, who are African American, it’s not because they can’t afford to do so. It’s that they have a justified mistrust in the system, a system that has not earned the trustworthiness of people of color.
I think that descriptions of trial results matter. Words matter. As clinical trialists [and] as scientists, we need to think about how the words we put out there will influence [the] future behavior of the people we’re trying to attract to science.
Patient-reported outcomes
Dr. Fayanju: Patient-reported outcomes allow patients to communicate their feelings, sensations, [and] experience without the filter of the physician’s perspective. We know through some landmark work that it may actually improve survival, being able to communicate those experiences directly to their clinicians in a timely fashion.
We also know it is associated with improved shared decision-making, and improved quality of life. In vulnerable populations, it may even allow us to anticipate potential delays in receipt of care and receipt of treatment.
The difficulty is that there’s already a lot of pressure on the patient encounter with regard to what patients are trying to communicate and what doctors are trying to achieve. It’s not that doctors or clinicians as a whole aren’t trying to hear what their patients are trying to say. It’s often you have 15 to 30 minutes to accomplish all of those things.
What I’m hoping to communicate is how best to do that. What are some strategies for collecting that data prior to the patient encounter, during the patient encounter, and potentially afterward? Does it have to be limited to the cancer setting? Are there ways in which we can potentially engage primary care?
Additionally, what are the modalities in which we need to engage patients? How can we it feel less like work? One of the things that we need to think about is how to engage behavioral economics to make it feel easy, both for clinicians and patients. We need to make this not feel like homework, both for patients and for providers.
How can the patient-doctor experience be improved?
We need to be multifaceted. We need to recognize that our patients don’t all engage with patient portals. Many of them have smartphones, but levels of comfort vary. We also don’t want to exacerbate existing disparities by giving some patients a lot of opportunity to communicate with us and other patients the minimal opportunity to communicate with us.
Being able to use both smartphones and simple phones, being able to take advantage of opportunities to communicate in the waiting room, being able to sometimes rely on paper and pencil, and also making sure that we have culturally humble as well as linguistically diverse opportunities for collecting that data are really important.
Looking forward to future research on breast cancer
I’m really excited about the idea [of] precision oncology, which right now focuses on the kind of molecular milieu.
I think it also needs to think about the social milieu of the patients. How can precision oncology take into account the specifics of a patient’s social context and tailor their care to their lives, not just the cells in their body and the DNA of their tumor?
With the increased attention, the social determinants of health that COVID-19 really caused all of us to really focus on, I hope that there’s more research. I hope it’s sustained interest in making all of us believe that data that’s important to collect, act upon, and incorporate into our sense of what health should look like and how we can promote cures by incorporating the whole human into our care of the patient.
When Marsha Calloway-Campbell learned her husband was diagnosed with multiple myeloma, it turned her world upside down. But since his diagnosis, she’s rarely left his side, which at times takes a toll on her health. A myeloma caregiver, she’s learned how to find community support and advocate for her husband.
As the Program Director of HealthTree’s African American Multiple Myeloma initiative, Marsha has a passion for empowering others. She works to address the many obstacles African Americans face in myeloma diagnosis and treatment.
She voices how she took on the role of caregiver by taking on many burdens, how she made sure her husband was getting the best care and treatment, and how she got through the heavy emotions weighing on her.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
I’m a mother of three daughters and a grandmother of a grandson.
Professional, career-oriented, type A overachiever, a Christian, a believer, [and] a family woman.
Pre-diagnosis
[Our] household was crazy busy. [Out of the] three daughters, one dances competitively. We drove all over the US with her. Six years later, her sister came and 20 months later, another sister came.
The two younger ones were athletes. They played basketball, soccer, volleyball… We let them try everything. Then we got into travel ball. There were times that he would put one in the car to go to Atlanta. I would put another in the car to drive to Chicago.
We were gym rats. He was an athlete. I played ball in high school. It continued even into college for the two younger ones. They were student-athletes. That’s the synopsis of us before. Let’s call it 2016. And that’s when he started not to feel well and things started changing.
Initial myeloma symptoms
Armaray is a Black man. I say that because many Black men don’t go to the doctor, but he did. He got yearly physicals.
In 2016, he had gotten a physical, probably July-ish. August [and] September came. He started not to feel well. He started seeing other doctors. He was 57 at the time. They said he had a slightly enlarged prostate. They said, “Go to a urologist.”
Nothing was making him feel better. We get to Thanksgiving. He stayed in bed the whole weekend. We just knew something was going on. We went to his general doctor.
Right around Christmas is when I started getting real concern and pushing his primary care. He told me, and I remember it like it was yesterday, “It looks like Armaray has some compression fractions in his spine.” We’re like, “Why? Where is that coming from?” He had been an athlete and had had some surgery in 2015, but for an L4 and L5. Everything was fine.
He started wondering, Is it related to that? Still, no one knew. They said, “Okay, let’s get scans. Let’s do physical therapy.” Put him in physical therapy. “Let’s get that TENS unit for the pain.” We did all of that. Armaray trying to stretch his back out, thinking that will help.
New Year came and [on] January 12th, he almost collapsed as we were about to go to physical therapy. Instead of driving him to physical therapy, I drove him to the ER. Pulled up at the door, went in, and said, “I need a wheelchair,” and that was that’s the beginning of that story.
Within an hour and a half or so, I heard that ER doctor say, “Put him in room 10.” I go up and say, “Oh, good. You’re admitting him.” He just looked at me [and] said, “Oh, yeah.” I saw the concerned look. He said to me, “How long has he had kidney disease?” I said, “He doesn’t.” And he said, “Well, he does. His kidneys aren’t working.”
Armaray, even at 57, was still the athlete. He worked out four, five, or six times a week. [At] 6’2” and 195 pounds, [he] ate better than anybody in the household. He took care of himself, was not on any kind of medication, no blood pressure medication, nothing.
The nephrologist was called in and they ended up saying to me, “His creatinine is 14.” That didn’t mean anything to me. But she looked at me and said, “It should be under 1. I don’t know how he’s standing.” That’s when the ER doctor looked at me and said, “It might be multiple myeloma.”
I was like, “Okay, but what is that?” I remember saying inquisitively, “Is that cancer?” And he said, “Yeah, I’m not sure yet.” Then he tried to walk it back a little bit, but the nephrologist was standing there and she said to me, “One of my nurses has it.” She needed to let me know that it was not necessarily a death sentence.
She said, “We’ll figure all this out later. I have to get him into dialysis.” They worked their magic. They got that catheter put in and he was [put] in dialysis that night. We stayed in that hospital for one solid month because things were happening fast.
I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.
Realizing he had to be admitted to the hospital
[With] all of those things they were doing, I knew I had to call people. At that time, the oldest daughter was a senior in college, living in the city. The two were in school, one was a senior [and] one was a sophomore in the middle of basketball season.
I knew I had to tell my mom, who was in her 80s at the time. Keep in mind, she’s known him since he was 17. He’s like a son.
He was admitted bright and early the next morning. Here comes the nephrologist and her nurse practitioner. He looks even better from just that one dialysis session. Every single morning that we were in that hospital, the two of them showed up to say, “Here’s what’s going on.”
Imagine being in the hospital [for] a month. There were many doctors [and] many specialists. They would come in and give me, “Okay, he’s probably going to have a blank test today,” or “This is probably what’s going to happen.” It kept me [in the know].
My sorority sister gave me a binder that first week. She said, “Listen, it’s going to be a journey. Take this binder. Write everything down. When doctors come in, write down their names and who they are.” I did exactly what she told me. But things started to happen.
They would talk to me. “He needs this surgery.” His lesions were up and down his spine. He needed to have what’s called a kyphoplasty to shore up the spine to make it more stable. He was too sick to give consent so, of course, I had to do that.
We had the pulmonary doctor looking at him. We had a cardiologist looking at him. They finally confirmed the diagnosis and they started to treat him.
We thought he was getting better. [Then] his lungs started to bleed. It was a reaction to the treatment. Now I have pulmonary, cardiology, and hematology kind of pointing the finger at each other like, “What’s going on?” The hematologist was like, “It wasn’t what I did.” It was just all of that.
I sat in that hospital and with all of that going on, I could not leave. I slept in that hospital every single night, but two nights. I was afraid that if I left, a doctor was going to come in and tell him something else.
We knew nothing about multiple myeloma. It still didn’t make sense to me. All I knew was he was not getting better. Things are happening. I need somebody to please, please figure this out.
‘If it is that, here’s the deal. It is incurable, but it is treatable.’ I remember those words distinctly.
Diagnosis
Taking on the myeloma caregiver role
In the beginning, things were happening so fast that I couldn’t fall apart. I had to get the information. I didn’t cry when the doctor would tell me whatever. My crying took place at night when I’m on that couch in the hospital room [where] they made my bed.
He’s sleeping. I’m crying and praying. Prayer got me through. I would leave his room sometimes and sit out in the lobby area. I would call close friends. I have some close friends that are like sisters to me.
I called my own doctor, who’s a very close friend of mine. Doctors just tell you matter-of-factly and that’s how she did it. She was like, “Look, if it is that, here’s the deal. It is incurable, but it is treatable. It’s going to be rough in the beginning.” I remember those words distinctly.
I was having those kinds of conversations with my mom, with my sorority sisters, a friend from church, and my pastor was also dropping in. He would show up at the hospital [late] at night because he could always get in.
I was running on adrenaline. I was in survival mode and all I knew is what I had to do.
Getting help
My pastor was saying to me, “Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?”
I was exhausted by then. I had dropped 27 pounds or so in 4-5 weeks because I was running on adrenaline. I was in survival mode and all I knew is what I had to do. But it wasn’t good for me. That was how things were.
I knew that I needed to talk to somebody. I’m sitting in this hospital room. He can’t communicate with me. The kids weren’t in a position. I knew I had to reach out to my closest circle.
My village is amazing. What I got from them was talking. I would advise [you]: talk to somebody. Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust. That’s how I got through it.
I started to make notes to myself about the business [and] things that needed to be taken care of. That’s when the shift happened. Crying, sitting in that hospital, we had no idea how long we would be there. I knew that I had to take care of some things.
I’m a lawyer. I have been for 37 years. I also have a market research consulting business. I used to work at Procter & Gamble when I was in law school. Meanwhile, I’m sitting in a hospital room, thinking I have a mortgage to pay.
Financially, I had to make sure we were good. But I also knew that there were things like disability. At some point, the diagnosis came so I’m like, “I should probably check about disability.”
I had a fight with an insurance company that I won’t name because they started sending me letters saying you took him to this hospital and it is out of network. I’m like, “You must be kidding me. I don’t know if he’s going to walk out of here and you’re talking about out of network?” I won that fight because I took him to [the] ER and when you go to an ER, who cares about [the] network?
The doctors were cheering me on. I started establishing relationships with all of them. “Marsha, what’s going on today?” They were asking me about the business of it all. “Did you beat the insurance company yet?” “What about Medicare? What about Medicaid? What about disability?” That was the relationship and that was the environment in that room.
If I leave the hospital to come home to shower, to lay down for a minute, a nurse would have my phone number and would promise to call me if anything went down in that hospital room.
My pastor was saying to me, ‘Marsha, you need to stop it. What are you doing? You are not Wonder Woman. You do so much for other people in our congregation. Let somebody help you. What do you need?’
Reaction to the diagnosis as a myeloma care partner
I decided that I have to be part of this medical team.
As lesions were up and down his spine, it affected his entire body. He couldn’t even move his arms. He couldn’t lift them. [On] the hospital bed, he was more comfortable with pillows under each of his elbows. But I had to do the lifting. At times, the nurses wanted to, but they were not gentle enough for me so I did that.
That’s when advocacy started for me. When the doctors would come in, I would connect the dots for them because [there were] so many of them.
Talk to somebody that you can trust, whomever that might be. Trust is a huge thing in our culture. We don’t always trust.
Treatment
The doctors said to me, “We want to start treatment,” which they did, and that was the treatment he was allergic to. It was two shots that I remember that nurse coming in one shot one week, came back, and gave a shot the next week. Then his lungs started bleeding. They figured out that’s what it was.
I have to say that those two shots knocked much of those bad cells out tremendously. There’s always a good and a bad. I’m thankful because it knocked the M protein way down, but they had to stop it.
He had to stop all treatment for some months until his lungs got clear and they figured it out. But the doctor said, “Here’s what can happen. We need to treat him. It could be we’ll never give him that again, but it could be pills.” My big question was always: is it chemotherapy?
They were throwing around the word “immunotherapy” and they had to explain that to me. When they started treatment again, they did start him on a regimen of some of the therapies, the pills.
I had to be very careful with those. Those things were scary. When I came home, they were like, “Don’t touch them, and don’t let anybody who might be pregnant or would get pregnant in the future touch them.”
Pretty early, they started talking to us about a stem cell transplant. He was diagnosed [on] January 17. By March 18, he had a stem cell transplant.
Making medical decisions
The decision was pretty much mine. I share it with him as much as I could, but I didn’t want to burden him with anything. I needed him to concentrate on getting well.
I said, “Listen. He’s not going to worry about anything. He’s not going to worry about finances. He’s not going to worry about this treatment. I’ll tell him what he needs to know.”
Role as care partner post-transplant
Love the team that we worked with. We met a lot beforehand.
He stayed in a wheelchair for a while. He had to learn to walk all over again. But by the time [of] his transplant, he was walking again.
I would take him to the doctor and they explained exactly what was going to happen. “We have to collect those cells. We have to go in the hospital then we’re going to give him this heavy dose of chemo and all of his numbers are going to bottom out.”
That transplant was tough, but he did it. God brought him through that. It was hard. It happened exactly like they told us.
I will say I thank God for that transplant. Put him in complete response. There’s no spike detection, no protein detection. He gets a check every month.
Just a multitude of emotions. It’s a journey. It’s up and down. We’re hopeful.
That transplant was tough, but he did it. God brought him through that. It was hard.
Advocacy
What was the shift for you?
My husband started getting better. That was when it switched in my mind. You can be an advocate for other people because home is taken care of to a degree. Things have settled down. You need to give back.
The advocacy that I do now is the “give back” part. I never want anyone to be caught off guard [by] multiple myeloma. I know there are a lot of other things out there to be caught off guard about, but for me, it’s multiple myeloma.
If you know what it is, know enough to ask your doctor what it is, that is what I’m trying to do. I share with people what it’s about.
Once you are taking care of someone with myeloma, be their advocate because it’s a journey. It can be challenging at times so they need somebody.
We are often diagnosed with low risk. However, we’re dying more.
Learning more about multiple myeloma
In the beginning, I didn’t want to know the details about the disease, let alone how it affects anybody. I just did not. At some point, I decided [I] need to know.
I happened across HealthTree and other organizations that had information about myeloma. What I learned was that Blacks are predisposed to the diagnosis two to three times more likely than Caucasians to be diagnosed with multiple myeloma.
Honestly, my reaction was, “Of course, we are, like other stuff, like everything else.” That was a turning point for me.
The other thing I learned was more men than women are usually diagnosed. I learned that African Americans are, on average, four to five years younger being diagnosed.
The thing that really got me was that African Americans quite often have lower-risk genetic myeloma. There are lots of kinds — low risk, high risk. We are often diagnosed with low risk. However, we’re dying more.
The doctors are saying you’re diagnosed with low risk, more likely, if — and that is the operative word, if — you can receive equitable treatment — the treatment that’s best for you, just like Caucasians would receive the treatment that’s best for them — your outcomes could be better.
Then we’re into the whole health equity, disparities, and inequities space. When I look for people to collaborate with, I’m looking for people in those spaces because those organizations and those people get it. If we could just get equitable treatment, we could have better outcomes.
Now I want to be clear. I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.
It goes back to awareness. We don’t know there’s such a thing so that’s where it starts.
I’m doing a campaign now. “Doctor, could this be multiple myeloma?” If I could teach everybody [that] if you’re not figuring out what the diagnosis is, you don’t know what’s wrong, [and] you have these symptoms, to say to your doc, “Doctor, could it be multiple myeloma?” Because then the testing could start.
The first thing is we just don’t know about it so we’re not aware of it. We’re not educated about it. But then even when you think about diagnosis, there [are] still these disparities.
Before a diagnosis, there are disparities because we’re not always taken seriously when we present our symptoms to a hospital, to a doctor, or to a nurse. Our complaints about what’s going on are sometimes minimized. We’re not heard. Testing is not being done proactively to figure out. That’s even before diagnosis.
Then after diagnosis, we have all these social determinants of health that are still there. We might live in an area where social socioeconomics [is] low. We might not live in an area where an academic cancer institution is. We may not have transportation to get to these academic centers. We may not know. We don’t get that influx of information. It can be all kinds of things.
Then when you talk about clinical trials for African Americans, I might not be in a financial situation [where] I can take off X number of weeks to travel to wherever to be in this trial. We might not have as simple as Internet in [our] homes.
Those are the things that I’ve learned. Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.
I want everyone to have great outcomes, but I also want African Americans to have outcomes that could be greater because we’re getting the same care or equitable care.
Importance of testing
It’s huge. Those are difficult medical things. Some stuff still just kind of goes over my head and I’m just like, “Oh, I can’t even understand that.” But what I do know is: ask. Know enough. For instance, know the common signs and symptoms.
You get your blood work done. It could be high calcium, there could be renal dysfunction so your kidney numbers might not be right, you might be anemic, and you could have bone pain. Those are the big ones. The acronym for that is C.R.A.B.
Know enough about that that if you’re going through something, you ask your doctor. “Doctor, could it be multiple myeloma? Can you test me for it?” You don’t even have to know what the tests are.
Here’s one thing that happens in our community. Everybody Black is told that we’re anemic. At some point, all five of us in our house have been told that we’re anemic. And I heard one of the Black myeloma specialists say, “We’re not anemic just because we’re Black. We’re not anemic because we have this melanin in our skin.”
Push back on your doctor because it could be something very simple — you need to take iron pills — or it could be something very serious — like myeloma.
That’s what I say to people. You don’t have to be a doctor. You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.
I always say to people who are then diagnosed: have somebody go to appointments with you or somebody to be there for you [to] take notes because you can’t get everything. I automatically take notes because that’s what I do, but not everybody does that. You can even take notes on your phone. There has to be a level of self-advocacy in this space that will serve you well.
Myeloma is already a tough journey and now we have to add these kinds of inequities on top of it to try to get through myeloma.
Distrust of the medical system
There’s distrust for good reasons. When I think about my grandparents, that generation was like, “Absolutely not. You will not use me as a guinea pig.” Those were the words because there were situations where Blacks were not done right. We lost lives and it was just a terrible situation.
Those events are in history. We know what they are. It wasn’t even done in a manner that tried to make Blacks feel like we were trying to do the right thing. It just was not right.
Then when I look at my mom’s generation, she still has a lot of distrust. “I’m not sure what these doctors are doing.” You look at my generation, it’s carried down. It’s even carried down when I look at my kids.
Now, I think it’s getting better as we go down the chain. But it’s still very real.
You don’t have to know every single thing but ask questions, demand time to be heard, and push for testing.
Importance of having family conversations
[In] the Black community, we don’t always openly share. It’s not because we don’t want to help our families. I’m thinking about my generation. We were taught that what goes on in our household stays in this household. You will not go out of this household talking about what goes on.
When my husband got sick, my first go-to was we will not play this out [on] social media. Even my generation, that’s what I think about. That can be a concern in the Black community because we absolutely need to share, especially with our immediate families.
I just say to families: share as much as you’re comfortable with. Send this brochure out to your circle. It’s about myeloma. Just share that. You don’t have to share anything about [yourself], personally, but share the information.
Words of advice
This is the work that just brings me joy. I’ve never shared information with people. They thanked me and hugged me.
When I think about [my] career, I’ve talked to a lot of people. I run my businesses. I would have to share about my business. “Come to me. As a lawyer, I can do this for you. I can do that for you.”
Although I was helping people, it pales in comparison to [saying] to someone, “Have you ever heard of multiple myeloma?” “No. What is it?” And I tell them and they’re like, “Ooh. Is there a test? Can I get screened? What do I need to know about it?” That brings me joy that I feel like I’m impacting lives one at a time.
As I look at other people who are doing the same thing and other organizations who are doing the same thing, I’m like, “Yeah, this is the important work.”
I have to thank my family and my close circle. Especially, my family, I can’t do what I do without them. I’m still working my job. My consulting and practice are there for me when I need them. My close circle, that village, is always there.
Barbara Kivowitz, Caregiver Expert & Author “A critical ingredient we need throughout our lives in all circumstances is hope. Hope can exist and persist even when a cure is not possible. You can attach hope to anything.”...
Multiple Myeloma: How Your Race and Age Can Affect Diagnoses and Treatment
Valarie Traynham
Multiple myeloma is the most common blood cancer among Black patients in the U.S., but many of those patients have an entirely different experience.
Studies show that Black patients respond better to newer treatments but are still twice as likely to die from the disease.
Patient advocate Valarie Traynham speaks with Shakira Grant, MBBS, of the UNC Medical Center. They discuss the barriers many Black patients face, how it impacts their care, and what can be done to help improve their outcomes.
Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
Valarie Traynham
Introduction
Valarie Traynham: I was diagnosed with multiple myeloma in 2015. Being a patient advocate, I want to be able to guide others through the process. When I was diagnosed, I did not have someone to go to and I think that’s very important. Newly diagnosed patients [need] someone [who] they can ask questions [and] find out information and where to go for good relevant resources.
I’m just so excited at the work that Dr. Grant is doing because it’s much needed. It’s an area that needs focus and she’s doing a wonderful job [of] getting that focus out there.
She focuses on a population of patients in the myeloma world that oftentimes [is] overlooked. It’s very important for that population of patients to be looked at and cared for and really understand what they are going through.
Dr. Grant is from the University of North Carolina and she focuses on geriatric multiple myeloma, health, and research.
Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for Black older adults with multiple myeloma.
Dr. Shakira Grant
Dr. Shakira Grant: I’m primarily here to talk a little bit about our research and how this fits into sharing stories of patients and caregivers, which our team is really passionate about.
What really drew me to this type of work was this love for trying to bridge this gap in terms of the disparities that we see existing within not only outcomes but also survival for Black and white patients with multiple myeloma.
Unfortunately, because multiple myeloma is also a disease that impacts older adults, we see this compounding effect, especially for older Black adults with multiple myeloma. It’s really important for us as a research team to address some of these healthcare access barriers, which largely drive the disparate outcomes that we see in multiple myeloma.
We presented two studies. For the first one, we wanted to understand what barriers patients and their caregivers encounter when trying to seek care for multiple myeloma.
The top takeaway from that study is that many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms. Often, patients reported being dismissed by their doctors and being chalked up to just getting older and then repeating labs again in three months.
From this particular study, while we identified other barriers, including financial barriers, we do recognize that there is a need to focus on how we make the diagnosis, ensuring that patients are getting the diagnosis on time, which would allow them to enter into a care pathway where they can begin their treatment and minimize any chances that they will have any poor or adverse effects from multiple myeloma.
In terms of the other study, we wanted to look at factors that influence the participation in clinical trials for Black patients in particular. We did this by looking at the perspectives of patients with multiple myeloma as well as their hematologists.
One of our main takeaways from this is that the patient and their relationship with their doctor is really critical when trying to decide if a patient is going to be offered the opportunity to participate in a trial. Based on these findings, we do recognize that there is a need for more targeted interventions that address several steps in terms of communication between patients and their doctors to ensure that we have the best chances of offering clinical trials to a diverse patient population.
Many of our patients report that there’s really a delay in getting the diagnosis of myeloma and this results in them going to multiple specialists with their symptoms.
Dr. Grant
How do we get more diversity in clinical trials?
Valarie: I heard a lot about clinical trials. How can we get more minorities involved? What is that like for the older population that you see in the clinic?
Dr. Grant: Overall, when we think about increasing representation in clinical trials, we are coming up against two compounding factors. One is the older adult and then it’s the older adult who also identifies as having Black race.
For me, in clinical practice, one of the things that we try to do is to not only look at [the] patient’s chronologic age, but we also look at the functional age of patients. How well are they able to do their activity and to get around day to day? I believe that [is] probably better to assess eligibility for these particular patients for clinical trials in terms of Black representation or increasing representation of minoritized populations.
It is important for us to realize that myeloma does tend to affect an older adult population. We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together. Our efforts to increase representation should be geared towards the older adult population, as well as thinking about the racial, ethnic, and minoritized populations.
We cannot really distill out and think about age and race separately, but we really should be thinking about these two things together.
Dr. Grant
How would you advise older multiple myeloma patients to stay positive?
Valarie: For a newly diagnosed older patient, how would you advise them? [There’s] so much going on. They’re getting the diagnosis. They’re trying to make it to the clinic. How would you advise them to stay positive and look for the good in the situation that they’re facing?
Dr. Grant: The thing that is really important that I’ve seen come out not only [from] our research but in my own clinical practice is the need to have a social support system. In our study, we looked at informal caregivers who were oftentimes spouses and, in some cases, adult children.
I really do think that having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you with the amount of information that you’re getting, scheduling, [and monitoring] any potential treatment-related side effects.
I think [it’s] really important for patients to also seek knowledge about multiple myeloma from credible resources. Read as much as possible what you can about this disease, about things that you can expect, and then come to your provider’s visit prepared with those questions ready.
Having that support when you’re first diagnosed is really critical because you have, in essence, [a] second set of ears, [a] second set of eyes to help you.
Dr. Grant
Ask [about] things like clinical trial participation, if your doctor hasn’t mentioned it. It’s really important for patients to take that first bold step and say, “I’ve read about clinical trials. Do you think this could be a potential option for me?”
This really moves into this idea that we want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Valarie: I’m so glad you said that because that is one thing that I always try to tell newly diagnosed patients as a patient advocate. Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
We want our patients to not only have a really great social support system but also to be empowered to be able to ask the questions that they need of their physicians without feeling fearful or intimidated.
Dr. Grant
How do you build medical trust in Black communities?
Valarie: We know that trust in the African-American community is a big deal and that’s what we are focusing [on], too: raise trust and build trust in the community. As a physician, what are some of the things that patients are mainly dealing with?
I was listening to something and they talked about words matter — how you talk to patients, understanding patients, words that you use, words that the patient uses, and understanding and gathering information. Tell me [about] your thoughts on that.
Dr. Grant: What we’ve seen in our studies time and time again is that there is this legacy of medical mistrust that has been brought on by past research events where Black patients were intentionally harmed by the research enterprise and so it takes quite a while to be able to reverse those effects.
Things that we’ve learned from talking to patients [and] caregivers that can help close that trust gap is really working on our communication style as physicians, making sure that we’re using empathic communication, [and] letting our patients see that beyond the doctor title, we also are real people with real lives and lived experiences.
Don’t be afraid to pull back that curtain sometimes and let patients see that that relationship between patients and providers really helps to build up trust.
Find reputable material. Find out everything that you can about the disease. Don’t be afraid of it. It’s something that you’re going to be living with indefinitely.
Valarie
I think of a particular quote from one of our studies where a patient said that it’s all about [the] relationship and if we need to build trust, we really need to be focused on the relationship. That particular participant went on to say that really they believe that the physicians could benefit from relationship-building training.
That really stuck with me because I recognized that trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
When it comes time to think about the research, there are different strategies that our team [uses] to really help foster trust and to help engage Black participants in our study. Some of those strategies have been described in the literature, but really it’s about having a team that is representative of the population that we’re trying to engage and helping them realize the value of this research and why we need to do this, especially for the Black community.
Trust is so difficult to address. These are some strategies that, as a physician, we can do to at least start to build that and close that potential gap.
Dr. Grant
We need to recognize that access to healthcare is dependent on several steps. This includes the patient’s ability to perceive their need for healthcare. Then they need to be able to seek out those services, reach the services, pay for the services, and engage with their healthcare provider.
I would encourage patients: if you are experiencing symptoms you’re concerned about and you’re seeing your provider and you don’t think your provider is necessarily answering or addressing those questions, don’t be afraid to talk to somebody else. Talk to another provider and do some additional research and see if there is potentially another option for you to have your symptoms examined.
They have to think about [the] costs of medications but also when they’re coming to the cancer center, the cost of parking, the cost of gas… all these things are really additive for patients, especially when they’re on a fixed income. This idea about having to pay twice was centered around the need to pay for all of these other healthcare services while also attending to the high cost associated with paying for parking at the health center.
In terms of other economic impacts, things like parking, don’t be afraid to tell your provider, “This is challenging for me to pay for parking,” or, “I’m having challenges just paying for my medications.” Because honestly, sometimes the visit time is so short that we don’t always have the time to ask if you are having financial concerns. We don’t want that. These financial challenges are a limitation to you getting your care on time.
Don’t be afraid to talk to your providers if you have concerns. Make those concerns known… If you’re having financial challenges, continue to share those concerns and ask about available resources.
Dr. Grant
Barriers patients face that prevent their care
Valarie: How often do you have patients that [face financial limitations?]
Dr. Grant: We actually see this, in my practice especially, quite often. It’s not uncommon at all for patients to be concerned about the cost of parking. Patients would express concerns about their ability to pay for parking. Sometimes it’s a bit of a challenge knowing what to do in those scenarios.
There are some efforts now at our cancer center to try to provide more accessible parking in terms of financial costs and reducing the cost of that, but it’s not always widely available to patients.
Don’t be afraid to talk to your providers if you have concerns. Make those concerns known. That goes from even when you’re first presenting, before you’re diagnosed and you’re concerned about it, keep sharing those concerns with your provider.
If you’re having financial challenges, continue to share those concerns and ask about available resources. There are more resources out there than sometimes patients may actually think or may actually have knowledge about.
Conclusion
Valarie: Thank you for joining us today and going over all of this. It’s so important what you do in the field of myeloma.
What we’re dealing with is meaningful. It’s life-impacting so it’s very important that you understand if you’re not being treated right or you feel that something is not right, say something because it’s not okay.
You have the right as a patient to have something done about that. You are in control of your health. Don’t settle. Without you, it would just be a missing piece.
Dr. Grant: Thank you for having me.
If you’re not being treated right or you feel that something is not right, say something because it’s not okay. You have the right as a patient to have something done about that. You are in control of your health. Don’t settle.
Valarie
Special thanks again to AbbVie for its support of our independent patient education content. The Patient Story retains full editorial control.
Dr. Samuel Washington is a urologist oncologist and assistant professor in-residence at the University of California, San Francisco. Dr. Washington’s research focuses on healthcare disparities.
In this conversation, he discusses how he became a doctor, the racial disparities in bladder cancer treatment and how to address those gaps.
Goldberg-Benioff Endowed Professorship in Cancer Biology, USCF
Education:
2007, UC Davis Bachelor of Science in Genetics, Minor in Latin
2012, UCSF Medical School
2018, UCSF Department of Urology, Residency
2019, UCSF Master’s Degree in Clinical Research
2020, UCSF Department of Urology, Urologic Oncology Fellowship
I commonly say no one’s intentionally contributing to disparities, but also very few of us are actively monitoring our own outcomes. We often see differences and attribute those entirely to the patient, [but] there could be things in our clinic or our clinical environment that we could impact.
I was introduced to medicine when I was 7 years old, so I was one of those lucky ones that got early exposure. As a child, it was just the fascination of what people are doing. It hit all of the bases in terms of being a way to help people, but also a way to engage in an academic sense in something that was quite interesting.
You’ll see a lot of us, particularly those in academics, there is an intellectual component to what we do that drives our research. The research drives the questions, and how to improve patient care feeds into the research in and of itself. It becomes this kind of self-fulfilling, self-enriching cycle.
How were you introduced to medicine?
I grew up in Houston and a town outside of Houston called Sugar Land, Texas.
No one in my immediate family was in medicine, but my mother had a friend who was a cardiothoracic surgeon. She was always trying to get us exposed early to different professions, and thankfully she was in a job that allowed us to do that.
Once my family heard that, they kind of fostered that throughout. It became really trying to find ways to volunteer or get more exposure throughout my entire career up through college to understand what medicine looked like.
Underrepresentation in the number of Black physicians
I think even throughout medical school, we’re always told that Black patients are at greater risk of X, Y, or Z. It was just a way things were explained. We were supposed to memorize that these medicines work better in Black patients. Black patients were at greater risk of X, Y, and Z, and that’s just the way it is.
I think when you start to question that and understand the why, rather than just being presented with observations, it becomes a little bit more interesting. You see where the large gaps are. Then for me personally, we talk about Black men being at increased risk of prostate cancer, for example.
I’ve yet to see anything that could tell me what my personal risk is, myself being a Black man, a physician [with] higher education, formal education. The fact that we don’t have that, but we continue to talk about disparities just tells me there’s a lot we don’t know. Not much has been done to really flesh that out, generally speaking, within the field of urology. There’s a lot of area of improvement there that needs to be addressed.
Muscle-invasive bladder cancer
Disparities in the bladder cancer population
Overall, in general, we think of bladder cancer as either being muscle invasive, so growing into the muscle wall of the bladder — as I call the bladder kind of a balloon made out of muscle — versus non-muscle invasive, where it’s just on the surface or lining the inside of the bladder itself.
Our treatments are different, depending on which group you’re in. We know that for patients for whom the bladder cancer has grown into the muscle, across the board, people are not getting what our guidelines say they should be getting. Depending on the cohort you’re thinking about, half of people will get some guideline-concordant treatment.
There’s a question of guidelines being appropriate versus equitable, but we know that based on where you live, how far you are from a facility that treats bladder cancer routinely, [and] who you are are all things that can impact the quality of care and the type of care that you get. I think those are the key things that we see in bladder cancer that we hope to look at with some of our research.
What does “who you are” mean in this context?
It can mean a lot of things. A lot of the research that I’ve looked at is around race as a social construct, so not just biology and seeing that there’s a biological difference between these peoples and that that is the cause of the differences and outcomes that we’re seeing.
[We’re looking at] how society is framing these people, Black versus White, insured versus not, educated versus not. All these different identities impact one another to lead to these outcomes that we’re seeing that are differences between groups.
How many bladder cancer patients have muscle-invasive cancer?
When we look at the overall cohort, I would say, depending on what you’re looking at, 25%, around there, 20%.
More aggressive treatment and worse prognosis for muscle-invasive cancer
If we are talking about bladder cancer that’s grown into the muscle, that’s muscle invasive, the gold standard for the last 20, 30 years has been removal of the bladder and rerouting the urine through one of many different ways.
What has been increasing in interest recently is trimodal therapy, which means using 3 different methods to preserve the bladder but still treat that aggressive bladder cancer. We know the type of treatment you get [and] how long it takes for you to get that treatment are all factors that impact your survival after diagnosis.
Recommended guidelines for muscle-invasive bladder cancer
I’d say broadly for muscle-invasive disease, our two options currently would either be radical cystectomy, which means surgery to remove the prostate and bladder and reroute the urine, versus trimodal therapy. It’s a combination of radiation, chemotherapy, and scraping out any residual cancer there may be to treat the cancer but leave the bladder in place.
As part of that workup and evaluation, you should be getting scans to understand if all the cancer is just in the bladder or if it is moved outside the bladder. As part of that, you should be talking with a medical oncologist to understand if you can get chemotherapy beforehand or after to help treat the cancer in any small cells that may be in the bladder or outside. If those things aren’t happening, if you’re not getting guideline-concordant care, then we know we’re chipping away at your survival risk over time.
What other treatment could they be getting, and how does that affect the outcome?
What that means is if patients aren’t getting treatment within 90 days of their diagnosis, if they’re not getting guideline-concordant care, they’re getting care that may not cure or control the cancer. Functionally, what that means is they’re going to be at higher risk of the cancer spreading [and] higher risk of eventual mortality or death caused by the bladder cancer, which is what we want to avoid.
Gaps and disparities in treatment
What are the current gaps in guideline-based treatment?
Guidelines in general are a set of recommendations by our overarching governing body telling us, based on the most updated literature in research and the consensus statement of experts, what this patient should have based on the type of cancer or disease that they have.
Those are what our guidelines are. It’s taking the mystery out of medicine, but it’s really kind of an algorithm. We find where these people fit in terms of the cancer staging and characteristics. Then we look at the guidelines, and they tell us what should offer the best outcomes for them.
Major governing bodies
There are a few — there’s our National American Urological Association, there’s the NCCN (National Comprehensive Cancer Network) — that are overarching organizations that accrue recommendations from experts in the literature to give evidence-based recommendations of what we should do.
Frequency of updates
Almost every year or every few years, particularly if there’s a new clinical trial or a new change that really changes the way that we practice in terms of a new study or a new drug.
Results of studies on treatment impact by race
From a study that we did using National Cancer registry data, we saw that when you start looking at not only disease characteristics but other non-clinical factors — so patients’ education, their insurance, so on and so forth — we saw that Black patients had 20 to 25% decreased odds or likelihood of getting guideline-concordant care compared to white counterparts with the same disease treated in the same location.
You start to see differences like that across different groups. The issue is that it’s not uniform, so each group has a different relationship or association that we’re seeing there, and we don’t have a clear understanding of why that is.
What’s causing these differences in outcomes?
It’s a good question. Thankfully, there are large studies happening now focused on patient-reported outcomes, so what’s going on from the patient perspective. I would say what’s not happening now is what’s happening at the physician or the facility level.
We have cancer registry data that is collected, organized, and reviewed by different research groups, but it doesn’t really tell us in a way that gives us feedback how our practice is performing. It doesn’t tell us, are there disparities at our practice? That requires a large infrastructure of a practice or an institution to be able to do that, and that’s not present everywhere yet.
What could be causing different treatment for White and Black patients with the same diagnosis?
Thankfully, over the last few years, we started to address structural issues related to differences in care, structural racism, [and] institutional barriers to care for some people. We’ve seen this come into play even with telehealth. Functionally, patients need to have a smartphone or a laptop in order to participate in telehealth. If you don’t have those, [if] you don’t have access to broadband, or reliable Internet, you can’t have the same outcomes. We’re not measuring any of this stuff.
We also have to take a look at the providers themselves. I commonly say no one’s intentionally contributing to disparities, but also very few of us are actively monitoring our own outcomes. We often see differences and attribute those entirely to the patient, [but] there could be things in our clinic or our clinical environment that we could impact:
The educational materials that we use and the required health literacy level for that.
How we provide access to care for different patients.
Are there things that could help patients in terms of transportation, social work, and so on and so forth?
Those things are not commonly measured at the same level that we monitor cancer diagnoses.
What cultural nuances affect the difference in treatment?
I think part of it is an understandable, and I would argue justified, mistrust in the healthcare system, given the history that we’ve had in the approach that medicine has used to justify some societal pressures and patterns.
I think what it comes down to often for patients that see me is for them, there is a shared life experience that we have that provides more comfort. That doesn’t mean that other practitioners that don’t look like them will not offer good care, but it does potentially provide a level of comfort that is not something that they’ve encountered before.
Instances of that that we’ve seen would even be prostate cancer screening, for example, in barbershops or in churches, bringing information to the patients, rather than us in our sterile clinical environment telling patients what they should have.
It does impact patients’ perception of care. We’ve seen how it impacts patients’ reluctance with new medications [and] adherence to different protocols. It does have an impact. It’s just that we haven’t measured it all that well thus far.
Advice for patients
What are some tips for patients?
I would say, generally speaking, if you see blood in your urine at any point, I would ask that that be worked up. That could be either just repeating a test, but oftentimes if you’re seeing blood in your urine, you need to see a urologist.
That’s kind of right up front in terms of not missing a timely diagnosis evaluation of potential cancer. If you have cancer that’s invading into the muscle, it’s worth asking, “Can I speak to someone that treats this routinely?” Because all urologists do not treat everything routinely.
I think that it becomes an issue when you see someone who does bladder cancer management as their primary focus versus someone who treats 1 or 2 bladder cancer patients a year. Both are trying to help you, but the comfort [and] the level of expertise in the nuanced information may be different between those 2 providers.
What should patients do if they feel something isn’t fine when their doctor says it is?
I think it’s worth asking, “Why is it fine? What would make it not fine?” I just have to remind people that everyone’s doing this already. I commonly get questions about negative tests [and] about positive tests. People are asking for more information. They’re looking for more information.
I think when people are worried about upsetting their doctor or getting the doctor mad for asking too many questions, that’s not really a thing. That’s already happening. I feel like people don’t understand that it’s happening all around us all the time in general anyway. It’s much more common than people would guess.
How to advocate for yourself with your doctor
I’d say the key things that I try to tell everyone are you need to feel comfortable with what’s happening. If you’re not feeling comfortable with the provider or the information, you need to feel comfortable.
If that means asking more questions of that provider, if it means finding other ways to get more information like the Bladder Cancer Advocacy Network, if it means going through support groups or peer groups for others who’ve been down that road. Getting more information is key so you feel comfortable.
Sometimes that’s a second opinion. Sometimes that’s just, “Hey, can I ask this doctor a few questions in an informal setting?” At the end of the day, you have to feel comfortable, so whatever it takes for that, because people are already doing it.
Other factors that can affect diagnosis and treatment
Generational differences in comfort level at the doctor
Depending on the generation, people’s background, [and] their comfort with health literature and all of the jargon we use, there’s different levels of how comfortable people will feel asking questions of the provider or asking for a second opinion in general. But that’s always an option. It’s covered by most insurances, and there are ways to ask questions in a manner that will not alienate your provider if that’s a concern.
It may take longer for older women, particularly women of color, to be diagnosed
I’d say women who are found to have repeated tests of blood in the urine or they see blood in the urine, sometimes these can be attributed to recurrent urinary tract infections. Whether or not there’s a positive urine culture [or] urine test showing bacteria, they will be routinely treated with antibiotics.
But what is missing is the workup to make sure that it’s not a cancer that’s hiding there and causing the bleeding. That can lead to delays as people get treated with antibiotics, and you don’t see any change in the symptoms. It’s because we’re not treating it correctly.
Particularly in those settings, particularly in women who are past menopause, postmenopausal bleeding is most certainly a concern to make sure we don’t miss a cancer diagnosis or something else that may be going on.
Psychological barrier of seeing blood in your urine
I would say I would feel incredibly worried if I saw blood in my urine. It takes a little bit of time and a little bit of effort to get past that and understand that is not something that’s normal.
I always tell people I would rather you ask the question, get it evaluated, and catch something early or it be nothing than the other way around, delay things, and miss a timely diagnosis.
If nothing’s changing, that’s a huge red flag that it’s not being addressed properly
I tell everyone that we are just humans who practice medicine. We are not infallible. We don’t know everything. It goes against the idea of a physician knowing everything. There’s a lot we don’t know.
I think at the end of the day, you need to make sure you know if there’s cancer or if there’s something else there. Understanding that a workup needs to be done and if you’re trying things and there’s no change, it’s time to reevaluate things.
Addressing these issues
What can we do to comprehensively address the inequity?
I think there are a few different facets to this. What is done currently, I would say, in some of the patients that I even see, when they are not getting satisfactory answers from their provider, they reach out to friends, or they ask, “Hey, can I see your doctor? Hey, do you know a doctor? Can I talk with that person?”
That happens to me. It happens [to] my colleagues all the time. That’s a way to get more information. I think what needs to be happening kind of at a systems level is checks. We need to monitor these things. What is happening with patients? Are we seeing differences in outcomes in our own practice?
I think intuitively all providers will say, “No, there’s not,” but we know that that’s not true. It’s not intentional, but no one’s looking. I think that when it comes to advocacy groups, advocating to be part of these research projects [and] focusing on projects that are relevant and pertinent to the patient, rather than just the investigator or the clinician, is important.
I think when it comes on a regulatory standpoint, it’s very tough to pull that nuance into regulations without cherry-picking happening, so people kind of selecting or ignoring specific patients to buffer or pad their outcomes. There are a few different ways for us to improve it at different levels. At the end of the day, I think this is a multi-level issue that’s not just the patients. It’s not just providers, not just system.
Representation in clinical trials
There’s a whole different discussion of how clinical trials don’t reflect the population. How can we take information from a clinical trial and apply it to a population that wasn’t included in the study?
I would argue my goal would be to find patients and treat them so patients don’t need a clinical trial. Their disease hasn’t progressed to the point where they need that. That’s a goal that I have and others have, but it’s a little bit different than the recent push to include representation in drug clinical trials, for example.
Have you had Black patients thankful to have a doctor who looks like them?
I get it not infrequently that a Black patient will just say that they’re happy to see me or someone that looks like me. It just reminds me that of the urologic workforce, it’s less than 3% of us, for all of urology, that are African-American [or] Black. [It’s] a much smaller percentage when you start to chip away and look at different subspecialties.
Again, it’s a level of comfort and shared lived experience that some patients have. Multiple patients or just advocates come up to me and just say they’re glad that there’s someone that looks like them. They’ve never met a Black urologist or a Black urologic oncologist, and I think that matters.
It may not be important for everyone, but I think for some patients, it is a game changer in their comfort with the care that they’re getting. It has absolutely nothing to do with the quality of the care I’m actually providing.
What can treatment providers do to make their patients more comfortable when they don’t have shared lived experiences?
I think embracing shared decision-making in general. It’s become part of our guidelines. Everyone says it should happen. Understanding patients’ level of comfort with our jargon, understanding if patients have questions, asking them what other questions they have, [and] making sure that they truly understand what’s going on are little things that we can do.
When you start to see patients who are lost to follow-up or missing appointments, simply asking them, “Is there something that can be helped? Or what barriers are you dealing with?”
[These] are questions that are not part of our questionnaires. They are not part of our clinical algorithm, but they’re very impactful for the care for the patient. I think asking those questions, which only takes another minute or two, can be hugely impactful.
Upcoming research on bladder cancer
I’d say that there’s a lot of ongoing research. I would tell patients who are interested in more information about bladder cancer, the treatments, support groups, and ongoing research, there are many outlets out there.
Bladder Cancer Advocacy Network is one that is focused entirely on this. Also, just asking your provider, “Are there resources here that I can look at? Are there clinical trials or support groups or information?” [That’s] another thing that I would like to get across.
Role: Center Director Urologic Oncology Focus: Urological oncology, including kidney, prostate, bladder cancers Provider: Cleveland Clinic ...
Dr. Babis Andreadis of UCSF shares his approach with patients, the importance of patient self-advocacy, whether to ask for a second opinion, and more on shared treatment decision-making...
Oncologist: Specializing in breast cancer | HER2, Estrogen+, Triple Negative, Lumpectomy vs. Mastectomy Experience: 30+ years Institution: Stanford Medical ...
Role: Radiation oncologist Focus: Specializing in radiation therapy treatment for all cancers | Brachytherapy, External Beam Radiation Treatment, IMRT Provider: Salinas Valley Memorial Health ...
Before being diagnosed with multiple myeloma and breast cancer, Valarie Traynham worked in the human resources field. Since being on the cancer journey, her focus has shifted to patient education and advocacy.
As a cancer survivor, her goal is to learn more about the diseases, educate others and bring light to health inequity. She wants to use her voice for those who cannot speak up for themselves to ensure that they receive equitable access to good healthcare, clinical trials and proper treatment.
Valarie’s journey in patient education, mentorship and advocacy began when she became a support group leader. She is now a myeloma coach, mentor angel and leader of the Black Myeloma Health Community. She has had the opportunity to talk about disparities myeloma patients face and looks for solutions through partnerships with healthcare providers.
Name: Valarie T.
Primary Diagnosis:
Multiple Myeloma
Initial Symptoms:
Nose bleeds
Fatigue
Back pain
Treatment:
Chemotherapy
Stem cell transplant
Secondary Diagnosis:
Breast Cancer, Triple-Negative
Staging: 1A
Initial Symptoms:
None; caught at a regular screening mammogram
Treatment:
Chemotherapy
Mastectomy
Get educated about your disease. Understand what it is. Knowledge is power. When you get that knowledge, do something with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Pre-diagnosis
Introduction
I’m [a] pretty down-to-earth person. I enjoy the great outdoors when it’s warm [and] spending time with friends and family.
What I do is work that’s around myeloma and patient education. I also enjoy doing things at my church. I’m really involved with my church and that brings me great joy.
Initial symptoms
It was late 2014. The first incident happened around Thanksgiving. I went back to school. I was studying and working on some homework on my computer [when] I got a nosebleed. I didn’t think anything of it. I just stopped for a little bit, held my head back, and [it] kind of dissipated [so] I got back to doing what I was doing.
The exact same thing happened [again] a couple of weeks later but this time, it bled a little bit more, a little longer than the first time. I still wasn’t concerned. I thought it was the weather. I’d asked some of my friends, “What do you think’s going on?” And they’re like, “Oh, it’s changing seasons and you probably got just some dry sinuses.” They told me to “just put a little Vaseline in there. You’ll be okay and keep going.” I did that and I thought it was working.
When I got a bout of flu, it just wouldn’t go away.
About a month later, I got sick with the flu and I just felt tired, overly tired. At that time, I was working full-time in HR. I was overly tired when it came to work, but I didn’t think anything of it. I was working, doing schoolwork, [and] very involved in church, so I just chalked it up to just trying to do too much at one time.
But when I got a bout of flu, it just wouldn’t go away. I went to the doctor. I got all the things that you take [that] should [make you] feel better. It was Christmas Day [and] I couldn’t even celebrate because I was sick in bed so I knew something was going on. I went over to my local [pharmacy]. They gave me more meds and said, “If you’re not better by Monday, go see your primary care.” And that’s what I did.
I went to see my primary care physician. I told her what was going on with the tiredness. At that time, I did have some back pain. It was nothing major. I told her about the back pain and the nosebleeds. She listened to what I had to say. She ran a complete panel of blood work and that came back showing high protein so immediately, she sent me to see a hematologist-oncologist. That’s how things started.
When she sent me to the hematologist and I saw ‘oncologist’ tagged on, I knew something was not like it should have been.
Initial hematologist-oncologist appointment
When my primary care referred me to the hematologist, I didn’t think anything of that because I had been diagnosed with anemia many, many years ago and I was taking iron supplements.
It wasn’t until I went to see the hematologist and found out that he was an oncologist as well. I’m like, “Why would I need to see an oncologist?” It was something that snapped in my head at that moment. This is a little bit more than what I’m thinking, but I still didn’t think anything too drastic.
I make this joke all the time. I tell people, “I went to see my hematologist thinking I was going to get a prescription for iron and I came back with a cancer diagnosis.” That’s literally how it happened.
When she sent me to the hematologist and I saw “oncologist” tagged on, I knew something was not like it should have been.
I heard the term ‘biopsy’ and I’m like, ‘Okay, this is really serious.’
Testing
They were a little suspicious from the blood work. At this time, they were still doing the full body X-ray. It was when they did the full body X-rays and the bone marrow biopsy [that] all the pieces started to come together.
Another incident that let me know it was a little bit more serious [was] when they asked me to come back. I went and did blood work for the hematologist early one morning and before I had gotten home, the nurse called and said, “We need you to come back. The doctor wants to do some more tests.” I’m like, “Well, what does he see? What is he expecting?” She wouldn’t say anything so that was another thing. Something’s going on because I haven’t even gotten home and you want me to come back right away.
She told me to come back because they needed to do a bone test. I didn’t know what that was. Little did I know that that was a bone marrow biopsy. When I got there, I heard the term “biopsy” and I’m like, “Okay, this is really serious.”
Importance of a good support system
Luckily, my friend went with me. She said, “I’m not going to let you go back over there by yourself.” I did have some support when things started to unfold.
I remember the doctor talking to me and I heard the words, “You have myeloma. It’s incurable.” I went blank for a minute. It is always helpful to have someone with you [to] maybe ask some questions that you wouldn’t even think to ask [or be] a second set of ears, second set of hands. You want to have somebody there.
It wasn’t as shocking because I had just learned about my chart. I had been looking at every single test that had come back. If this is high, what does it mean? Multiple myeloma kept coming up and I’m like, “What in the world is that?” But I still put it out of my head.
It wasn’t until that moment I went into the office and was sitting there and heard those words. It was like somebody kicking me in the gut. What? Cancer? An incurable cancer? And that’s when the flood of fear came. I’m going to die. I’m too young to die. Why me? All of those range of emotions. How am I going to tell my family? What do I say? Where do I even start to talk about this?
My friend, Judy, went with me to that appointment. She’s a cancer survivor as well so she was like, “I’m not going to let you go by yourself.” That was very helpful to have someone who has heard those words before. She knew exactly what I could have been feeling so she was there to help me keep it together.
Breaking the news to loved ones
It was hard. I didn’t do it right away. It [took] a couple of weeks. I knew they would have questions that I didn’t know [the] answers [to] or where to even begin.
My friends see me every day and they want to know what’s going on. It was easier for me to say, “Hey, this is what’s going on,” and just left it at that because I didn’t know what to expect.
I don’t live near my family so it was a little difficult. It was hard because I didn’t know what to tell them. I didn’t know the answers. That was one of the most difficult things to do. I finally got the courage to just say, “I’ve got multiple myeloma and this is what it is. I don’t know where it came from. I don’t know anything, but this is what I’ve got. This is what I’m looking at.”
What was very helpful to me was the advocacy agencies… Places like that are very good to provide information.
Learning about multiple myeloma
It was tough to begin with because [of] the shock that you have myeloma. But I learned very, very early. I wanted to learn as much as I possibly could about whatever was invading my body. If I can learn about it, I can at least try to get one step ahead.
For me, I always say it was just a control thing. I felt the more I knew about it, at least I would have some control. That was my mindset so I went on this mission to find out whatever I could about the disease.
It just stuck with me, actually, this whole time. I’m always on a mission to find out a little bit more about the disease.
Finding the right information
It’s different for everyone. What was very helpful to me was the advocacy agencies. I went to the IMF (International Myeloma Foundation) website to find out what you’re going to need to know and some questions. They have some cool tip cards and brochures.
I utilized the MMRF (Multiple Myeloma Research Foundation) website [and] found out what was going on. Places like that are very good to provide information.
At that time, HealthTree was just coming up so I was looking to see what I could find that was going to help me figure out what to ask at what point in the journey.
I got diagnosed and they wanted me to start treatment the next day. I was like, “Okay, I guess I should go ahead and do this,” because what do you do when you get cancer? You want to get it out of you.
I didn’t start right away. It was probably a week or two later when I went in. I followed what they said because I didn’t know the right questions to ask. I went along with what the doctor [said]. I hadn’t sought a second opinion. I didn’t realize that I needed to see a specialist.
I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility.
Deciding to get a second opinion
About three treatments [in], I just felt horrible. At the urging of my family, they were like, “You got to get a second opinion. You have to. You’re up there where all those doctors are. You have the ability to do that.” I decided to get a second opinion and it’s one of the best things that I could have ever done.
I saw a hematologist at a local hospital. He treated other cancers as well so I realized that that was not the best thing for me.
They started me out with Thalidomide, Velcade, and Dex — that was my treatment regimen to begin with. I didn’t realize that was an old regimen that wasn’t being used and my doctor probably didn’t realize that either that’s why he gave me that. I did about three- or four-week cycles worth and by that time, I was able to get that second opinion.
I was in really bad shape at this point. I had to have a wheelchair to get from the car to inside the facility. I knew something was wrong because that was not me at all. Two months ago, I could still walk and was coherent.
Where I live, there is a facility called the Cancer Treatment Centers of America. Everyone was like, “You’ve got to go there. That’s all they do — cancer, cancer, cancer. You’re going to be in good hands.” I decided to go there.
It was[then] I started learning a lot more about myeloma and the different treatments available. It was through them that I got connected with the specialists.
I came to find out that my hemoglobin was at 4.6 so that’s why I was feeling horrible. I learned that [my regimen] was not the latest treatment. [It] was standard of care, but there was something better.
I also learned about stem cell transplant. We talked about [it] and what that looked like. I learned a lot more than what my local oncologist shared with me. I feel that with my local oncologist, [there] was a lack of communication. I was told, “You’re going to do four cycles of this, then you’re going to go for a stem cell transplant, then you may do a couple more cycles, and then you’ll be back to your new normal.” And I was like, “Oh, okay, so maybe [in] a year things will be back to normal?” And that was not the case.
When I got to the other doctor, he really explained what the process entailed and [that] there’s no certain time. It’s not like you’re going to do this and you’ll be back to your normal life. It was eye-opening because I wanted to believe what I had been told. It sounded so much better and it would have worked for me if that were the case. But life’s not like that.
At first, I was a little angry. How does this even happen? But it happens. It helped me understand that there has to be more done when it comes to awareness and letting people know about myeloma. Letting people know that this is what myeloma is, but also letting them know what treatments are out there, what you should be getting and what [is] probably not the best thing for you to be receiving either.
Side effects
When I switched from Revlimid to Pomalyst, it took a little bit of getting used to because my body was like, “Oh, I don’t think I like that.” I had major GI issues and most people don’t have GI issues with Pomalyst but that’s something that I was struggling with.
Taking those in combination, I had shortness of breath [which] slowed me down even further. I was concerned. There’s the risk of cardiac issues when you’re taking Kyprolis. I got afraid. I’m like, “I don’t want to take that because it may be doing something to my heart. I’m having shortness of breath already.” They sent me to see a cardiologist a couple of times just to make sure everything was okay and [it’s] one of the side effects. I eventually adjusted to that. That’s just part of the new normal so I adjusted and kept going.
I was very vocal. Even if I thought it was a side effect, I would say something because I didn’t know. I looked at the list of everything that could happen but maybe this is something that hadn’t been reported. It is possible.
With Velcade, I did have some neuropathy in my toe area to start with. My doctors would always ask, every week when I would come in to get it, “Are you feeling any numbness, tingling, or anything of that nature?” Even if it was a small amount, I would make sure that I said something so they could do something about it and that was very helpful.
Velcade is a subcu (subcutaneous injection) and I’m sure most people would have those little spots on their abdominal area wherever the shot was given. Sometimes it could be painful and I would tell them so they could guide me on what to do. [There] wasn’t a whole bunch they could do. It’s just unsightly. It’s a reminder of what you’re going through but still, I was very vocal in letting them know what was going on.
With Revlimid, one of the first things that scared me is I woke up itching one morning. It started as an itch on my legs. Did something bite me? Is it a mosquito bite? Before the end of the day, I was just itching all over uncontrollably. The more I scratched, the worse it got. Nothing would take it away. I called the doctor and they called in a prescription that would help. But people need to be aware of that. I didn’t know that could happen. I was surprised. What the heck is going on? It was really bad.
I realized that I’m not in control of this or anything else.
Dealing with treatment roadblocks
It was that word: control. It was then that I realized I’m not in control of this or anything else. I did all the things that I was supposed to do. I got my knowledge. I have no control.
All of those feelings, I just sat with them. I didn’t try to push them away. I just said, “You’ve got to deal with this. You’re going to have to deal with this.” And I just dealt with it.
My faith played a very important role. I had my prayer partners praying and that helped me tremendously. And I sought some therapy because I knew I can’t do this by myself. It’s not something that I can just pray away. I really needed some outside help.
I needed somebody that was going to listen and just listen. I couldn’t talk to my friends because they didn’t understand. They just hadn’t been there. They didn’t know. Therapy was one of the best things I could have done because my therapists helped me through the process.
My faith played a very important role… And I sought some therapy because I knew I can’t do this by myself.
Stem cell transplant
Preparing for stem cell transplant
I did four cycles of treatment thinking it was going to bring down the disease burden to where I could move forward with [the] transplant. At the end of my four cycles, I’m thinking, “Yes! It’s [the] transplant.” It didn’t happen. I hadn’t eliminated enough of the cancer cells in order to move forward.
Then comes the conversation of [needing] to do more therapy. We’re going to continue the induction therapy. That’s when I found out about myeloma clones. Never heard of that until I was about six months in. It’s those little things that if you know, then you can be better prepared.
I wasn’t prepared to be told [I] can’t go to transplant. It’s so funny because I went and shaved my head. I was like, “I’m going to shave it all off before it happens.” And they’re like, “No, you can’t. You’re not ready for that yet.” I was disappointed, a little angry, [and] just bewildered. What’s happening now? Another gut punch.
I got switched to Revlimid, Velcade, and Dex. I did four additional cycles. [When] it wasn’t working anymore, I was switched over to Kyprolis, Pomalyst and Dex, and I had [an] immediate response. That’s what really got me ready for the transplant.
Expectation setting
Going into the transplant, I was told what I could expect. I used to follow The Myeloma Beacon. I started following Pat Killingsworth and listened to what he said. I got his book about stem cell transplants. I read the book and I’m like, “I’m going to make sure I do everything that they say to do.”
Follow the advice of your doctors and nurses. They do this every single day. They can tell you how to prepare. I listened and followed some of the big names out there. These people know what’s going on and that helped me prepare for the transplant.
The week before the transplant, I found out my insurance was not going to cover [it] where I wanted to do it. That was something else that had to be worked out. Eventually, we got it taken care of but that was a very stressful time just trying to figure [it] out. What am I going to do if the insurance is not going to cover it here? What do I do?
Dealing with insurance issues
I was working with the stem cell transplant navigator at the hospital. She was such a godsend because I didn’t know what to do. I did not need the stress. She was like, “Hey, this happened. We’re going to take care of it,” and she just knew the right things to do.
I had everything in place. My family was coming out to spend time with me. A couple of my friends had taken off work. They had taken vacation time to be there for me. So when I heard this, I’m like, “Whoa, everything’s in place. It can’t just not happen because it’s going to affect other things.”
She helped me get it all worked out. Have somebody working on your behalf. Don’t try to do it all by yourself. If you’re one of those people [who thinks] you don’t need help, you do need help. Someone to help you with paperwork, to make phone calls for you, to do that type of work for you. People want to do that so let them.
The stem cell transplant navigator was excellent. My other friend, Karen, was excellent [at] making phone calls and doing things. I didn’t have to stress a lot because they made sure that things were taken care of. They [took] the pressure off of me.
Don’t try to do it all by yourself. If you’re one of those people that think you don’t need help, you do need help. People want to do that so let them. When things come up, let them.
Stem cell transplant process
It was a little scary at first. I was going into the unknown. I didn’t know what to expect. They told me, “On this day, you’ll go in. You’ll get the high-dose Melphalan. Make sure you chew ice chips. Then you’ll have a rest day and then you’ll get your stem cells back.”
A couple of weeks before, they give you shots that stimulate the stem cells. I had to give myself those shots in my stomach and that was a process because I never had to give myself shots before.
After four days of shots, I went to the facility to harvest the stem cells. They put this big catheter in your neck, which feels really, really weird. It was very painful for me to do the apheresis and get the circulating stem cells from the blood. That process was a little scary because you don’t know what to expect. You’re laying in bed hooked up to this machine and you see the blood going out of your body and being flushed back in.
I was very fortunate. I got all of the cells I needed in two days so I didn’t have to come back. They told me it could take four days to collect the cells.
I didn’t go for the transplant right away. I waited a couple of weeks and something was going on with my schedule and I wasn’t able to go.
Then came the insurance issue. My cells were frozen for a couple of weeks. I [went] back to the facility and had to reinsert the Hickman port — very uncomfortable to go through that process.
I’m admitted to the hospital. They test for C. diff (clostridium difficile infection) and lo and behold, I’m positive for C. diff so there’s another component that you don’t expect. That means I’ve got to be isolated in addition to the transplant. Other precautions had to be taken as well.
I remember it was a Wednesday evening. It was a very long day. I get the high-dose Melphalan and I’m chewing on ice chips. Thursday was my rest day. Bright and early Friday morning, the nurse comes in, checks all my vitals and she’s like, “This is it. This is the big day.”
A couple of hours later, the other nurse came in with this little bag of cells and I’m like, “This is the life-sustaining things that I’m going to get back.” At that time, a couple of members of my family had come up. My friends had taken off work to be there for me, supporting me. They kept a chart to let me know what was going on outside of the hospital.
I received my cells back. It was Friday morning [at] about 11:40, [I] celebrated my new birthday and the rest is just waiting to see what happens.
Recovering from the stem cell transplant
One of the most trying times was waiting for that engraftment period. I didn’t feel too bad the first couple of days. [On] the third day, I could start to feel something’s going on. The fourth day [was] okay.
On the fifth day, my head started to hurt. Every time I would run my fingers through my hair, it would just hurt tremendously. I’m like, “What the heck is going on?” Little did I know that was the beginning of the hair getting ready to fall out. And that was tough, even though I knew it was going to happen. It was still tough when it did happen.
Like clockwork, on day five, all my numbers bottomed out. I was feeling horrible [and] had the worst diarrhea that you can imagine. I felt that I was going to die. I woke up that morning and I was like, “Oh my God, I could die from this.” At that time, I was alone. My visitors hadn’t come in yet and I was just sitting there like, “I could die. If I get an infection, I could die. There’s no way I can fight it off.”
There was another patient undergoing stem cell transplant [who] had been there a few days before I’d gotten there, caught an infection and didn’t make it. Just knowing that on top of everything else, I was a basket case.
But I had great doctors, great nurses [and] a great team of people [who] took care of me and pulled me through it. They would come in every day, check on me, do what they had to do, and say, “Hey, you got to keep positive. You will get through this.” And I believed them because they do this every day. Why would I doubt them?
Recovery was really hard. The thing that surprised me most was the overwhelming fatigue. I would get up, sit on the side of the bed and go, “Oh, I can’t do this today,” and lay back down for a little bit. Then realize, “Okay, you’ve got to get up. You can’t just lay here in the bed. That’s not going to be helpful to you,” so I managed to get up. Then it was like, “Okay, let’s get to the shower,” so I would manage to get a shower, but I [got] out of the shower and I [had] to lay back down again. I’m like, “What in the world is going on? I can’t even hold my arm up.” That went on for a pretty good while.
I didn’t have to worry about cooking, cleaning, or anything like that. My friends were very good with making sure I was taken care of [so I could] take my time and get better. I made myself get out, walk to the mailbox, [and] walk around the block just to get some exercise. When I did that, I did feel better. There were times when it was 1:00 or 2:00 in the afternoon and I felt I needed a nap. I listened to my body.
Maintenance therapy post-SCT
We talked about what was going to happen after the transplant and we agreed on consolidation therapy. That was very popular at the time. Some doctors were doing it, some were [not]. We talked about doing consolidation for about two to three months after the stem cell transplant.
Consolidation therapy is just a continuation of the therapy you were on before you went for the transplant. You just do it a little bit longer to deepen the response to try and get rid of more of the disease burden.
When you look at that myeloma iceberg, consolidation therapy chips away at that iceberg a little bit more. We talked about doing that for two to three cycles more and that eventually turned into a 12-month cycle.
I really didn’t fully understand that at first. “We talked about two to three months. What are you talking about?” But when they explained to me how we want to deepen the response, I’m like, “Oh, okay. I guess I can go through this a little bit longer.” In my mind, that’s going to give me a longer remission, help me live longer, [and] help me live as much as normal life as I possibly can. I fought it at first but when I saw the risk-benefit, why not?
Consolidation therapy
We talked about what’s next long before the end of 12 months because I [didn’t] want any surprises. We talked about just doing Pomalyst, going on a single regimen for maintenance.
[While] I was going through consolidation therapy, I did MRD testing. I did find out I was MRD negative, which I was really excited about. I understood what MRD negative meant so I [asked], “Do I still need to do maintenance?” Because we had talked about going on maintenance indefinitely.
Side effects from Pomalyst
Once I completed the consolidation therapy, I went right into maintenance therapy. I didn’t have any problems with it [initially] but eventually, it did weaken my immune system to a greater magnitude to where my counts were always low.
I was doing monthly blood work. I had to do that in order to get Pomalyst. My counts were consistently low. I was having to get the Neupogen [and] Neulasta shots to build my ANC (absolute neutrophil count) up.
At that time, my hemoglobin was still borderline. I was still often fatigued. I had a conversation with my doctor about that and they were like, “Okay, maybe we can do a dose reduction.” We talked about that, what that meant and what it looked like. I did a dose reduction and that did help improve my numbers to where I was not as bad all of the time.
I stayed on that particular dose for a couple of years then the same thing started to happen. I was experiencing bone marrow suppression. It was really bad so we did another dose reduction. I told him what was going on, how I was feeling, [and] how it wasn’t improving. You could see it in my blood work. Every month, it was the same thing.
We decided to do another dose reduction and found a happy spot where I’m comfortable. I can live freely, so to speak. I’m comfortable doing things without fear my counts are low. And this is before COVID. You have to go out in a mask and it’s like, “I don’t want to do this.” You [can’t] participate in events because you’re afraid. If I get this least little thing, I’m going to be sick and down for days. It relieved that. It made things better.
Testing for minimal residual disease (MRD)
MRD stands for minimal residual disease. It is the test to determine if they can detect any myeloma cells after transplant or induction therapy. It wasn’t something they did on a regular basis back [then]. When I had that test done, I was very happy to hear that I was MRD negative.
My doctor and I had talked. “After you finish consolidation therapy, we’re going to put you on a single agent Pomalyst as maintenance.” My question was, “What if I’m MRD negative? You just said I don’t have any traces. Why should I take this? Why should I want to continue with the maintenance again?” They explained to me [that] the goal is to get rid of as much myeloma as possible, chip away at as much of that iceberg as possible.
When I saw the benefits, I made that [decision]. It was ultimately up to me if I didn’t want to do maintenance. All I had to do was say, “No, I don’t want to do that.” The doctors would have been okay with that.
That’s one thing I learned: shared decision-making. You have to have a say in it because ultimately, it’s your body, it’s your quality of life so make sure you have a say in what’s going on. Don’t just go along with it.
Receiving a second cancer diagnosis
I was doing well, trying to get back on track to my new normal and along came a breast cancer diagnosis. This was out of nowhere.
I was going for my yearly mammograms and always was told, “You have dense breasts. Just keep an eye out for things and we’ll see you back next year.” At this particular time, I went for my mammogram and got a callback. They [said] “We want you to come back. We need to do an ultrasound.” I didn’t think anything of it. I’m going to go back and they’ll do an ultrasound and tell me I’m good. That was not the case this time.
They picked up something on the screening mammogram [so] they pulled me back for a diagnostic mammogram and ultrasound. When they did the ultrasound, they did see a couple of things that were not on the previous year’s ultrasound so I was sent for a biopsy.
I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better.
I was scared. At that point, I knew what biopsy meant. They’re looking for something. They don’t just send you for a biopsy. It was breast cancer. Here I am again, that whole gut kick. Again? Really? Where did this come from? What did I do to deserve this?
But I will say, having been on the myeloma journey and knowing a little bit more, it was a little easier to manage this. I’m not saying the treatment was easy — it wasn’t — but knowing the right questions to ask at the right time, I knew how to advocate for myself a lot better than I did going into the multiple myeloma. That’s been an added step to my journey. I’d like to say [that] myeloma prepared me for the things that I went through with breast cancer.
Dealing with a second cancer diagnosis on top of myeloma treatment
With the breast cancer diagnosis, I was terribly scared. I’m going to have to get treatment for this. Is that going to trigger something in the myeloma? That brought about this fear. Am I safe to do this?
The breast cancer diagnosis was very early stage — it was stage 1A. There was no lymph node involvement but the location of the tumors [meant] I [had] to have a mastectomy. That is a whole ’nother beast. The blood cancer was almost like an invisible cancer. It was something that was going on within your body.
With breast cancer, it was a lot different. It was harder. Having to have [my] breast removed was very difficult for me to accept in the beginning. This was just too much. I can’t go through this. I just can’t do this. It’s just the thought of amputation. I was very fearful.
Even though I was prepared as a patient, I was still very fearful because I didn’t know what the treatment would bring. I didn’t know [what] the side effects would be. Again, I tried to be positive about things and look for the silver lining.
My breast cancer was triple negative. There’s no pill that I can take to suppress anything. Again, I was very fearful. What if I go through all this — I have this chemo and I have my breast removed — what if it’s still there? What if it comes back because it’s triple negative and it’s not as easy to treat? I was dealing with a lot of fear in that instance as well, just like I was with the myeloma.
What helped me was I just sat there in the fear. I acknowledged that fear. I was thinking, Okay, you’ve gotten through myeloma. You can get through this, too. It’s very early stage. I was in a good position, if that makes sense. I don’t [think you’re] ever in a good position with any cancer, but I was in a good position where I wasn’t too concerned.
My doctor assured me early on. “We can take care of it. This will not take you out, Valarie.” That was very reassuring to hear. The oncologist said that the surgeon said the very same thing. Very supportive and [guided] me through that process as well.
How culture influences health care
There are so many things that vary from culture to culture. A lot of times, cultural beliefs prevent people from moving forward with a certain treatment. Not just stem cell transplants, but certain treatments. Receiving blood — certain cultures just don’t do that. Those things have to be acknowledged.
You have to understand someone’s culture in order to understand why they would make certain decisions. Culture is a big influence on decision-making in many instances.
Dealing with the healthcare system as a black woman in America
Being a myeloma coach, I get to talk to myeloma patients, many [of] who have been newly diagnosed and [have] been on the journey for a while. I get to hear a lot of what they have been through or how many times they had to go to the doctor to get a proper diagnosis.
I realize that I’m very fortunate. My primary care knew the tests to run, picked up on the high protein, and sent me to see a hematologist. I know that is not always the case. People may have to go to the doctor two or three times before they even are heard to say, “Hey, this is what’s going on.”
I talked to many people who, when they get to the doctor, find out that they’re in kidney failure. On top of having the disease, it’s the shock of how you are told that you have the disease. Those are the types of things patients deal with.
I was talking to this lady. She went to the doctor [and] finally got the diagnosis, but they wanted her to wait to start treatment. They didn’t want to start treatment right away. Why would they want you to wait? That doesn’t make sense. I see that that doesn’t make sense, but as a patient who doesn’t know how things are supposed to work, that may seem normal.
I was told about [the] stem cell transplant early on in the process. There are patients [who] are not told about that. They’re just told, “We’re going to utilize this treatment and if this doesn’t work, then we’ll go to something else.” This was before we had so many novel therapies so it’s not like you had a lot to choose from. It was just assumed you don’t want a stem cell transplant, you may not be able to get to the facility, or you may not have the support to go through a transplant. It’s just varying things that patients have to deal with when it comes to health inequities.
As a doctor, you have to talk to your patient and find out where there is hesitancy. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it.
Sometimes it’s not discussed simply because it’s not talked about. And that’s very unfortunate because of the bias. You’re making that assumption just because I live in a certain zip code that maybe I shouldn’t do this, I wouldn’t want to do this or I don’t have the ability?
A lot of it is just access to care. We [have] to make sure that we’re getting the patients to the right place at the right time. We have to break down those barriers.
I’m not a doctor, but as a doctor, you have to talk to your patient and find out where there is hesitancy. Let’s say you talk to someone about a stem cell transplant and they decide they don’t want to do it. You have to find out why. Is it that they don’t want to do it or [do] they have other things creating barriers [that don’t allow] them to do it?
Child care. If you have children, you can’t just say, “Hey, I’m going to shut down for two weeks to be in the hospital and then I’ve got 100 days of recoup time.” Who’s going to take care of things? Who’s going to take care of the house, particularly if it’s not a two-person home? Getting back and forth to the clinic [for] follow-up visits. All of those things need to be taken into consideration. You can’t make the assumption that someone just doesn’t want to do it because they just don’t want to do it. There may be underlying reasons.
People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow.
Importance of shared treatment decision-making
It’s a game changer, particularly for patients who are accustomed to just going along with what the doctors say. In the African-American community, that’s kind of the norm. The doctor knows best. He knows more than you do about the disease. You need to follow what you’ve been told. That’s just instilled in a lot of us. But that’s not the case. It doesn’t have to be like that.
People need to understand that they play a very important role in their treatment decisions. You don’t have to just go with the flow. You don’t have to follow what the doctor is saying blindly because you don’t think you can say anything. You can say something and you should. Because again, it’s your life. You have to live with the side effects. You have to live with the treatment schedule so you want to have as much say as possible in that.
All of those feelings that I was still in, I just sat with them. I didn’t try to push them away.
Words of advice
It was my faith that really pulled me through and knowing I’m going to get through this. I believe that I’m going to get through this. I’m trusting the process, as they say. Just trust the process.
You have to acknowledge those feelings that you have because if you don’t acknowledge them, they would just eat away at you. Tell somebody. I told my friend, “I felt like I was going to die this morning. I really felt that. I didn’t know what was going to happen, what could happen.” And that was very helpful when I let that out, when I released that and said something.
You can’t ignore your feelings because they are not going to go anywhere. They’re going to be there. They want to be acknowledged. I acknowledged every thought that came. I’m scared.I might die. It was just getting it out there and releasing it. Having that release was very helpful in my situation.
Find something that’s going to give you hope. Very early on with the myeloma, I got connected with others [who] were on the journey. Get connected with others that have been on the journey.
About six months into my diagnosis, I met a 26-year survivor and that just brought me so much joy. I was like, “26 years? You lived? I can do that, too! It’s possible for me, too.” Meeting that individual gave me so much hope.
Don’t think you’re alone in this. You’re not alone. There are so many people dealing with a lot of the same things that you’re dealing with. Reach out to those people. Get connected. Whether it’s through a support group or a group at your church, get connected.
One thing that you don’t want to do is shut yourself off from people. Don’t shut yourself off because that’s not going to do you any good.
Make your needs known. People don’t know what you need. They can speculate. “Oh, she’s going through cancer. She may need this,” or “Oh, she just got out of the hospital. She may need this,” but don’t make people guess. Let it be known because people want to help. They’re willing to help but a lot of times, they just don’t know what to do so you got to tell them.
Get educated about your disease whether it’s myeloma, breast cancer or any other kind of cancer. Find out about the disease. Understand what it is. Don’t just listen to what people tell you. I’m not saying you have to be this research advocate. Knowledge is power.
When you get that knowledge, do something with it. Don’t just sit on it. I think that’s where we make the mistake a lot of times. We have all this knowledge and then we don’t do anything with it. Learn how to advocate for yourself. You have a voice. Your voice deserves to be heard so use your voice.
Look for the positive. I try to be positive about everything. [There’s] a silver lining somewhere. Find that silver lining.
Listen to your body. Don’t think that you have to get back to life. You have to heal. You have to listen to your body and take the time that you need to get well.
Sometimes, people are afraid to speak up because of embarrassment. “I’ll just deal with it.” Don’t suffer through. There are things that can help you get through so take advantage of those things. Utilize those things. Communicate with your doctor. I know a lot of people are not comfortable talking to their doctors. Talk to the physician’s assistant. Talk with the nurse practitioner. That’s what they’re there for.
You [have] to speak up. If patients are heard or feel they are heard, that would change the whole dynamic. A lot of people, if they feel they’re not heard, they’re going to stop talking. It’s not going to benefit them.
Listening and understanding — listening for understanding and not just listening to say, “Well, I heard what they say. It still doesn’t make sense to me.” It may not make sense to you, but it’s still acknowledging what the patient said, what’s been said.
Find others on the journey. Connect with others. Educate yourself. Knowledge is power.
Don’t think you’re alone in this. You’re not alone.
My Dad Was Diagnosed with Prostate Cancer. Now I’m Fighting It.
Dr. Leanne Burnham: A Caregiver, Patient, and a Doctor’s Journey
Motivated by her father’s prostate cancer journey, Dr. Leanne Burnham, scientist and community program coordinator at the City of Hope, dedicates her time and expertise so that communities of people of color could better understand prostate cancer and its specific risk factors.
Not only has Dr. Burnham been been a caregiver to both parents with cancer, she’s a lymphoma survivor, herself.
Her mission has been to raise more conscious and open conversations among families about their risks of cancer. That makes her a perfect fit in her department: Division of Health Equities at City of Hope.
Dr. Leanne Burnham is doing such amazing and inspiring work, not just in prostate cancer diagnosis and treatment clinical trials but also in patient self-advocacy, support, and other important socio-cultural factors around cancer. Explore our entire conversation below.
I am Leanne Burnham. I was born and raised in Akron, Ohio. Home of Lebron, we like to say. I live in California now. I am a wife and a mom of three. I have a 17-year-old, a 12-year-old and a 10-year-old.
I’m a scientist at the City of Hope, that’s what I do. I do experiments at the bench for sure. We call it at the bench when we’re in the lab, but I also do a lot of community work and work in clinical trials.
Prostate Cancer
What is prostate cancer?
There’s a lot to unpack. But first of all, women don’t have prostate, so it’s just a male disease.
Another thing that seems silly to say, but the prostate and the colon are two separate things. A lot of times people think they’ve had a colonoscopy means they’ve gotten their prostate checked. But that’s not the case.
According to the American Cancer Society, prostate cancer is one of those diseases with a 100% cure rate at five years if you catch it when the disease is still localized or confined in the prostate.
That’s amazing because not a lot of cancers are like that. Many people would hear, “Prostate cancer is one of the better cancers to get,” or they hear, “Prostate cancer happens to older men,” which is true.
It’s a disease of age, and there have been some studies that by the time men reach their 70s and 80s, many men, if not most, have prostate cancer at some point. But prostate cancer isn’t what ultimately kills a lot of men that have it.
For that reason, a lot of people tend to not get so stressed when they think about prostate cancer and their risk of it.
But it’s important to realize that the second you have prostate cancer cells escape out of the prostate and spread in the body, you go from a 100% cure rate in five years to there is no cure.
There’s no in-between, so all of the treatments we have once the cancer cells have escaped are to prolong life or improve quality of life.
We’ve got some really great treatments out there. We’ve got cutting-edge treatments nationwide that are really extending the lives of many patients, and they’re living great lives. But I’m at the City of Hope, so, of course, I’m partial.
It is also important to point out that, yes, prostate cancer is very curable, it happens a lot to older men, but that doesn’t mean it doesn’t happen in younger men.
It doesn’t mean that there are no aggressive forms in younger men. It certainly doesn’t mean that if you have prostate cancer, you’re just going to be cured and be fine because it’s not that way for everyone.
Diagnosing and Staging
First of all, you start with a PSA test. That’s testing your prostate-specific antigen, which is a protein secreted by the prostate. It’s circulating in your blood, so that’s one of the first markers they can test and say, “Hey, something is going on with your prostate. It might not be cancer, but something is going on.”
After a PSA test, men will get a biopsy, then they get a Gleason score. Pathologists look at the tumor under the microscope and assign a score based on how cancerous the cells are looking.
The higher your Gleason score, the more aggressive your cancer is.
There are genetic mutations that not everyone has access to, but some physicians provide that for their patients. Especially if they have a lot of family members that have had prostate cancer.
You can look at the genetics and see if there are some mutations that make the tumors more aggressive. What makes it hard to pinpoint treatments for prostate cancer, and to find a cure ultimately, is that prostate cancer tumors are very heterogeneous.
If you’re taking a sample from one part of the prostate and another sample from another part of the prostate and you’re looking under the microscope, they look different. There are different genetic mutational landscapes in those tumors.
Prostate cancer cells are very smart. Every cancer cell is smart. I’ve had cancer but I also have tremendous respect for the cancer cell, its ability to navigate its way and go undetected by the immune system, its ability to receive treatments and figure out ways to resist those treatments and form mutations.
The ability of resistant cells to keep growing is truly amazing. Cancer cells find a way, I tell you, but the key to its science is when they find a way, we have to tackle that new way.
It was totally unfamiliar to me. I don’t really have a family history of cancer at all. My dad was relatively young. He was like 50 at the time. He worked out a lot, he ate very well, he was going to Mustard Seed (organic grocery store) and things like this.
One day, he called me as I walk out of a physics class. I picked up the phone but he wasn’t talking; he was just crying.
I was like, “What in the world is happening?”
I just heard him crying on the phone, and he said, “I have prostate cancer. You’re the first person I’m telling. I haven’t told your sisters, so if you can come to the house when you get out of class and I’m going to talk to all of you guys. I’m just letting you know.”
At the time, I was a premed student, so he was reaching out to see if I had any advice, which I didn’t know about prostate cancer at all.
That experience really kicked off my passion for understanding what was going on with him. But beyond his diagnosis of prostate cancer, I started to notice that Black men in our community were getting that, as well.
It was just something I hadn’t noticed before, so I’m like, “Oh wow, this person at church has it. Oh wow, this person at the grocery store has it.” Different men were getting prostate cancer in their 40s and 50s. It was younger than what I would have thought.
So since I was a student and I had some shadowing opportunities and some research opportunities, I decided to get those hours at Cleveland Clinic, which is number one in urology in the nation, and that’s where my dad is a patient.
I went, and I was able to spend quite some time there. I was with a physician one time when he walked into a room with a Black patient with prostate cancer, and when he walked in the hallway with me, he said, “I hate these cases.”
He said, “Because every time I see a Black man in their 40s, or 50s with prostate cancer, it’s almost like it’s a different disease than other prostate cancers.” He was like, “You have to treat it so much more aggressively. It’s just a different ballgame.”
That’s when I thought, “Wow. I never had thought about it. Was there a difference in race and all that?”
From that point, when I went on to Loma Linda University to get my doctorate, I decided that I was going to focus my dissertation on prostate cancer and Black men specifically, and looking at reasons why their tumors might be more aggressive.
Prostate cancer in Black men
There are so many reasons why that is, and there’s been a lot of research that goes into looking at the multifactorial reasons behind that. We do know that Black men are much more likely to get prostate cancer.
Different numbers float around.
The American Cancer Society says that Black men are 76% more likely to be diagnosed. We do know that Black men are much more likely to be diagnosed at younger ages. When they show up to the clinic, they’re at a more advanced stage.
We also know that they are more than two times more likely to die from prostate cancer.
But what’s new on the forefront that we have found in the past five years doing clinical trials that include Black men is that when Black men are given cutting-edge treatments that are out, they actually respond better to treatments than men of other ethnicities, which is really exciting for any disease that you look at.
You can look at breast cancer, colon cancer, or others. If you have a certain demographic that is most high risk and doing the worse, if you can show that if you give them medications, they’ll do better, that’s a win-win for everybody at the end of the day.
Disproportionate risk to prostate cancer
Watching him go through his surgery and radiation and seeing his medications and things that he was on made me realize how private prostate cancer can be.
I really have never even talked to him about this, so dad, don’t get mad when you watch. I noticed some issues come up that maybe men would be embarrassed about. That was the first time I saw it with him.
Now that I’ve worked with hundreds of men with prostate cancer, that appears as a common theme.
Men are scared of certain treatments. They don’t want to have the side effects and don’t necessarily feel comfortable talking to people. They feel isolated sometimes.
That was the first time I saw my dad not be such a superhero. He became more human at that moment. Maybe he was embarrassed or nervous. I wasn’t used to seeing him like that.
DNA and genetic component
In terms of different reasons why he got prostate cancer younger, or Black men in general, for sure, there is a genetic component. I’ll start with the things you can’t change.
You can’t change your DNA. The reason that Black men in the United States specifically are at increased risk for aggressive prostate cancer is because their DNA happens to trace back to the DNA of West African men.
This makes sense because, in the history of the US, the transatlantic slave trade, Black people in the US came from the western portion of Africa. Not surprisingly, men in West Africa have very high rates of aggressive prostate cancer as well, so that DNA matches.
There are certain variations on certain chromosomes that we know that are more likely to occur in Black men than other ethnicities that makes them more likely to get aggressive prostate cancer.
Role of Vitamin D
In addition to that, my boss, Dr. Rick Kittles, the Director of the Division of Health Equity at the City of Hope and an internationally known geneticist and prostate cancer researcher, has shown for a decade that there’s a link between vitamin D deficiency and prostate cancer risk.
People may have heard about COVID going on, like, “If you’re vitamin D deficient and have COVID, that’s not a coincidence.” Vitamin D deficiency leads to a lot of pathogenic trends.
With prostate cancer specifically, we know that vitamin D deficiency leads to tumor aggressiveness. But how that relates to Black men is that our bodies make vitamin D from the sun, and our bodies are dependent on sunlight.
The more melanin you have in your skin, the less vitamin D your body can synthesize.
If you have darker skin, and then in our lifestyles now, we’re not outside in the sun as much as we used to be, we’re much more likely to be vitamin D deficient.
In the African-American population, about 70% are vitamin D deficient or insufficient. There’s a vitamin D link to prostate cancer as well, then we know that there’s diet and lifestyle, of course.
It’s always good to have a healthy diet, of course. But we’re doing studies at the City of Hope right now where we’re looking at the link between charred foods, like barbecue or grilled foods, and the ability of the consumption of that to contribute to more aggressive tumors.
Socioeconomic factors
There’s also socioeconomic status, which goes a lot of different ways. But first of all, it controls your access to healthcare that you have.
Of course, if you have better access to healthcare, you’re going to have earlier screening, maybe a better team of doctors who will treat your case with a precision medicine approach, and you’ll have access to newer cutting-edge treatments.
But the other part of socioeconomic status that we’ve really dived into in 2020, given our nation’s culture, is looking at discrimination, especially in healthcare and medicine and in science really.
We know that stress kills, literally. And there are studies out there, and I published on it, on how much cumulative stress somebody’s taken on over their lifetime. We know it occurs more often in Black people.
If you have that cumulative stress, it dysregulates your HPA axis. It dysregulates how much cortisol your body is making and how your body responds to that cortisol and looks at glucocorticoid receptors. But that’s real science; we don’t have to go all into that.
Comparing cancer cells in Black and white men
Basically, what I’ve shown previously is that when I treated Black prostate cancer cells that I was growing in the lab with cortisol and compared them to Caucasian cells. I had Black cells and I had White prostate cancer cells.
The Black cancer cells grew more aggressively, and they upregulated these genes in these proteins that made them more likely to resist therapy. You could have this cumulative stress that would dysregulate your stress hormone system, making you more likely to get cancer. Then once you do get cancer, it makes you less likely to respond well to treatment.
That’s a very interesting concept that’s being studied right now. There’s a lot of research dollars going into that nationwide. I’m not working on that anymore, but I can’t wait to see like the results that come out of that.
Ignoring the risk factors
This is something that infuriates me, for sure. I’ve also published on this.
First of all, in Southern California, where I live, we did a study looking at more than 400 men and found that with 54% of Black men, their doctors never even talked to them about prostate cancer screening. We have to start with that.
A lot of men are not even getting screened when they should. That is because prostate cancer screening recommendations for a while we’re saying, “Okay, screen every man at 50,” and then in 2012, the US Preventive Taskforce said, “We’re not screening men at 50 anymore.”
The problem is that it really hurt Black men, and that recommendation was based on studies that looked at 200,000 men that did not have prostate cancer.
They had done the PSA test to see if it was indicative that they would get prostate cancer in the future, but the studies say over 95% were men of European ancestry.
This recommendation is applied to everyone, but it didn’t consider a racial difference in prostate cancer risk.
The American Cancer Society and Prostate Cancer Foundation says that if you’re Black, and you’re 45, you need to get your PSA tested. If you’re Black, and you have family members that have prostate cancer, you need to get tested at 40.
This is the recommendation, and then you go to the doctor and your doctor says, ‘Actually, no, you don’t need to be screened.’ That’s a big problem.
That happens so many times. Of course, if you go to the doctor and the doctor says you don’t need to test, who would want to get the test? You’re just like, “Okay, I’m good. I don’t need to get the test.”
That’s the first thing. But then once you do get the test and you get your PSA results back, there are differences in how those numbers should translate based on race.
For a while, the number that men would look at is four nanograms per milliliter of your PSA. If it’s higher than four, then maybe you want to do some follow-up.
It’s actually 2.5 for Black men, according to the American Cancer Society. Dr. Rick Kittles has published that, actually. You can look at numbers of 1.5 in Black men and it can be predictive years down the road that it’s going to transform into prostate cancer.
A PSA of 14 is quite alarming and then by the time he was diagnosed, it was 64, as far as I can remember.
When you go to the doctor, and you have an elevated PSA, and a high Gleason, I can’t tell you how many times where I’ve had people reach out to me and they’ll say, “Hey, my Gleason score is seven and my doctor says that I should do watchful waiting.” I say, “Did they look at you? Do they know that you’re Black? Did they get the memo?”
It’s not a one-size-fits-all blanket approach sometimes. You really want to make sure that your physician, first of all, is referring you to a urologist. I would definitely say, go to a urologist at that point and have them help you make the decision and hopefully with somebody that’s well-versed in how this disease affects men differentially.
Watching out your genetics and mutations
You hear about BRCA mutations of breast cancer. Not surprisingly, if you have a high risk of breast cancer in your family, that also translates to prostate cancer.
They’re both hormonal cancers, but particularly, if you have BRCA mutations that run in families, we can treat patients with those mutations with PARP inhibitors. There are different kinds of PARP inhibitors that are in clinical trials right now. You’d have to check and see what’s available for you.
Oftentimes, we know that these mutations lead to more aggressive tumors. But sometimes, it’s like hitting the jackpot because then you have access to an additional line of therapy compared other patients that don’t have those mutations.
Genetic Testing
I think it would be individualized, and that the urologist would discuss with the patient their family history and just get a sense of how high their risk is. I don’t believe that it’s offered to everyone. Just because you want it, I’m not sure that you can necessarily get it or your insurance would cover it.
You could always pay for it out of pocket, but not everybody has that luxury. But if you have multiple family members that have prostate cancer, it is definitely something worth looking into.
Ongoing studies on PARP inhibitors
Dilemmas and decisions
I love working on clinical trials, because to me clinical trials, how I try to explain it to people, is like a VIP access to cutting-edge treatment.
Many people can be afraid of clinical trials because you might think that you’re going to be a guinea pig. There’s a lot of mistrust in clinical trials in the Black community, for sure. Number one, because of the Tuskegee syphilis experiment that was just a trial gone completely wrong for 40 years.
There’s a lot of mistrust about clinical trials and who’s funding it and who’s behind it, and if I will be a guinea pig or get a placebo.
A lot of people have an idea that they’re going to get a placebo when in actuality, if you participate in a clinical trial, you are either going to get standard of care, which is what’s offered in the clinic to anybody that have your particular disease, or have the option get the VIP treatment on top of the standard of care or in place of the standard of care.
The VIP drugs don’t get to that stage just like that. It’s years and years in the making so by the time it’s to that point, we, scientists and physicians, feel very confident that this is going to work.
Thus, it is important to point where it’s at in a clinical trial and that there are different phases of clinical trials too. There’s phase 1, phase 2, phase 3. Obviously, the later the phase, the more people have used that drug in that disease setting before. So you can decide if you want to do a phase 1 trial or feel better with a phase 2 or phase 3.
Stratified Clinical Trials
With clinical trials, they typically, in the past, have not included a lot of minority populations—Black, Latino, Asian, Native American, for sure. So it really does a disservice to everyone because you need to know how a drug would work in the context of different genetic variations.
One drug may work really well in one demographic, and it might not work as well in another, so we really try to accrue.
This means recruiting and enroll Black men in prostate cancer clinical trials, which makes sense because they’re more likely to get the disease and die younger.
It’s important to look at these new VIP cutting-edge drugs and Black men could really benefit from them. As I mentioned before, some recent trials enrolled a lot of Black men. We call it race stratified clinical trials.
There were a few studies where one was looking at hormone therapy, one was looking at chemotherapy, and one was looking at immunotherapy. In all three of them, the Black men that participated in the trial had longer survival than men of other races and ethnicities.
When we looked at that, scientists like me who do health disparities research were like, “Wow, that’s so encouraging.”
At the City of Hope, we have a team of scientists and physicians and clinical research nurses, and statisticians who come together and think about diseases and ways to help people who suffer the most from that disease.
Talazoparib clinical trial
Alongside Dr. Rick Kittles, Dr. Tanya Dorff, who’s the Director of the Genital Urinary Program there, and Dr. Zijie Sun, who’s another prostate cancer researcher, we designed a clinical trial to use a PARP inhibitor called talazoparib. It’s a newer-generation drug that Pfizer makes.
This trial is also sponsored by Prostate Cancer Foundation and we’re going to be using PARP inhibitors in a racially diverse group of patients so we are going to have a third of the patients be white men, a third of the patients be Black men, and a third of patients be Asian-American.
The Asian population is very heterogeneous, so I just hate to throw it all into one.
Many Asian-American men actually do better with prostate cancer than white men. Black men do the worst. So we want to see how this drug works in different races. But we’re not just picking races just to see; there has to be some sort of a scientific reason.
Racial Differences in Androgen and Androgen Receptors
The reasoning there is an interplay at the cellular level between PARP and androgen receptor. Androgen receptor has some variations that affect its function.
Androgen and androgen receptors are crucial for prostate cancer cells to grow. That’s why if you get prostate cancer, one of the treatments is hormone therapy because we want to block androgen and the androgen receptor.
There are racial differences due to genetics where different trinucleotide repeats that exist in the antigen receptor. There’s different links, so they’re shorter repeat links and there’s longer repeat links.
Asian men, not just American, tend to have longer repeats, and African-American men tend to have shorter repeats. The repeat length may affect the men’s response to this PARP inhibitor with the talazoparib. We’re going to see.
The study just kicked off this past month and we’re starting to accrue patients. It would be one more drug in the arsenal because as I said, this is going to be offered to patients who already have metastasis.
They can do different drugs that are out there, but this PARP inhibitor could be something that’s extra added to their hormone therapy, and that’s what we’re looking at. We’re looking at the Talazoparib specifically with Abiraterone acetate at this point in time.
Developing targeted therapy according to race
That’s something that we could check in the future. We could look at their androgen receptor, look at your trinucleotide repeats, then we could say, look, you’ll be a great candidate for this drug in the future beyond clinical trials.
But it’s not going to target the shorter. It’s the same with everyone. We think that there may be differences in response in the androgen receptor and the trinucleotide repeats within that receptor, within that gene. But we don’t know what to expect.
It may work well for everyone, but if there is a difference, we want to tease that out.
This is a two-year study, and we assess the study. You don’t just start the study and then just let it go and check at the end. You’re constantly tracking your progress as it goes, so we should have a good idea by the end of the year.
Building trust in clinical trials
That to me is the most important part of it.
In the past 20 years, there has not been an increase in the number of Black physicians accepted into medical school. That’s the problem. It’s not making it through medical school; it’s getting accepted into it.
A study came out of Oakland last year that showed how much better the outcomes were and how much more the diseases were addressed when Black people went to Black physicians.
We look at it in Black maternal death rates and infant mortality, and we know that just by the presence of a Black nurse or a Black physician in the room, the mortality rates go down, just by them being in the room.
That is a lot to unpack on why that is, but there is a trust factor when you have cultural competency in the room. Race doesn’t have to match all the time as long as your physician is culturally competent and sensitive to different communication styles and cultural contexts. It can work just fine, but we know that there are still many barriers, for sure.
When they go into the office, the patients feel the bias going both ways. There’s bias on the part of the patient, and then there’s bias on the part of physicians.
First of all, increasing the number of minority physicians, in general, would help. But what we like to do is to have a diverse team—diversity, in terms of race, gender, age, and occupation. We have physicians, nurses, scientists, and many of us who work within the Division of Health Equities at the City of Hope have personal ties to how we even got into this.
I got into this because of my dad, and so I’m speaking to Black men, and they’re saying:
“Oh, I feel fine. I don’t have any symptoms.”
“Really? Because my dad didn’t have any symptoms either.”
“Oh, I don’t know if I get that done. I’m not going to have a normal life.”
“My dad had that, and he’s doing great.”
That works on these teams who have personal ties, and so it comes across as more genuine, for sure.
We’re not just going to collect samples for research and just leave. We are there to help the men. We do actual prostate cancer screening in the community.
I know people freak out. We don’t do digital rectal exams in the community, but we do the blood tests, we provide the men their results and then we offer follow-up care and it’s not just at the City of Hope.
We partner with community clinics for men who may not have insurance or under-insured to make sure that they get that follow-up care, especially if their numbers are low enough that we think it could be caught early.
That’s really the goal of everything that we do. But, yes, the mistrust is a real thing and we try to tackle it that way.
Another way to really increase minority enrollment in clinical trials is just to provide access in communities of color.
Not everybody can travel to your main clinical trial center. I know at the City of Hope, we’re very fortunate to have community sites in Pasadena, Antelope Valley, or Santa Clarita, Pomona.
There are different locations to make it easier for patients to go from their neighborhood to a closer location to get treatment, which helps.
There’s financial incentives as well, and that can be controversial for sure.
Some of our trials offer them, and some of them don’t. But a lot of times, when you’re a cancer patient, getting to clinical trials is expensive. You and your caretaker have to call off work, you might have to get lodging, have transportation costs, and so a clinical trial can provide some financial incentive to help overcome that. It can really open the door for a lot of people.
Telemedicine as a tool
Telemedicine definitely has its pros and cons we’ve all learned during quarantine, for sure.
That translates to prostate cancer as well. If you don’t live close and have the technology and the app you need to communicate with your provider, it can give you access to perhaps more than you were exposed to before.
City of Hope Work in Communities
It’s our community-based prostate cancer program directed by Dr. Rick Kittles. I am lucky and blessed that he allows me to be the project coordinator for that. I work under him to recruit licensed phlebotomists. We recruit volunteers.
It is not hard to recruit volunteers because these events are the highlight of our week. They’re so fun. We get so much more out of these events.
Anything that we give back, we receive back in the energy of the individuals that we meet and we touch.
First of all, we provide education.
Let’s say we’re at a church. Usually, the pastor will let us get on stage for five minutes to say what we are doing and why it is important.
We know in the literature that, unfortunately, the men who are most at risk for aggressive prostate cancer don’t think that they are. So the first piece is letting people know they belong to the high-risk group.
Then a lot of men are afraid of the digital rectal exam. We let them know that it’s the PSA test now. You can get the DRE when you go to the doctor, but since 2017, you lead with the PSA.
A lot of times, when they find that out, they say, “Oh, okay. You don’t have to do that. Then I’ll do the blood test.” That’s the next part of it.
We also let them know that most of the time, with prostate cancer, you don’t have any symptoms. Men will be at Taste of Soul or the Long Beach Jazz Festival and are sitting there with their drinks and their cigars, and they’re, “I feel great. I feel great.” On the other hand, you might frequently be urinating at night.
We go into the communities, educate, interact, do the blood tests, and then follow up within two weeks. And we tell them, “Don’t freak out. That doesn’t mean you have prostate cancer. But either way, you just want to stay on top of your prostate health.”
We send every person an individualized letter. By individualized, it’s an official letter from the City of Hope. It gives them their PSA level. Based on their race and age, we translate to them what that means for them. Not everybody’s letter is going to look the same.
If they are at a younger age but they are showing a 2.5 or a 3 PSA, we’re like, “You really want to follow up and get this double-checked.” We follow up within two weeks.
If a man has very high PSA levels, we will call to make sure they got that letter. We tend to follow up after a few weeks for everyone who has elevated PSA, anyway, just to see, “What have you done with that?”
Many men find out and haven’t told anybody and they’re nervous to take the next step. So we help them with that.
Then we have social workers that help to navigate them getting to their next follow-up person. Whether it’s at the City of Hope, we would love to offer the different treatments that we have there.
But not everyone can travel that far, or maybe their insurance doesn’t allow them to. We partner with community clinics in the LA area where patients can go there as well.
Lessons from Community Work
I’ve learned how much people trust their doctor without knowing their personal risk. They trust their doctor knows their risk. It’s scary how often it doesn’t necessarily seem to be the case.
I’ll talk to men sometimes, and they’ll say, “Oh, I had that test done.” Then I’ll say, “You went and got the blood test?” They’ll say, “No.” Then I find out they’re talking about the colonoscopy. That’s one thing.
A lot of times, I hear, “I got all my blood work. My doctor does all my blood work every year.” Then I’ll say, “Well, did they include that in your blood work?”
A lot of times, it’s not included. They’re checking your blood sugar and your enzymes but not the PSA. Now that you have medicine apps on your phone, they’ll say, “No, I did it. My doctor ordered it.” They’ll pull it up. I say, “If you don’t mind, let’s look and see. What was your PSA?” Then it’s not in there, and then they’re like, “What? My doctor was not testing?”
It’s endearing how a lot of people do trust their doctor. Then it is sad to see sometimes they’re let down, but it’s like, “Now you have the tools. Now you email your doctor, and next time you’re in there, you let them know that you want to have this test, but actually, you don’t have to because we’re going to do the test now, and we’re going to give you a letter, and you can show your doctor.”
Hopes and prospects in prostate cancer research
I think we’re so close. When I got into this when my dad was sick, his doctor told him at that time, “Oh, you have a set amount of years.”
He’s passed that amount of years, and he’s doing well. We know he’s not curable still, but I hope to change that. When I got into this, I said, “I’m going to find a cure for my dad,” many people say. That’s the goal of a lot of scientists. They have a loved one, and that’s why they got into it in the first place.
I’m at a place at City of Hope where we have so many clinical trials, so many cutting-edge treatments, and we’re seeing patients that are really doing well. I just feel like we’re just at the cusp of it.
I’m just like, “Dad, hold on. Just hold on. We’re at the cusp of it.” I do think that it’s around the corner. I don’t think that it’s something that’s decades away. I think it’s sooner than we think and I’m really hoping that’s the case.
Being on both sides: Survivorship and cancer research
I was in science before I got cancer. My dad had cancer first. Then I was in science. But I was walking around with cancer for six months myself, and then I had to do chemo in the whole nine yards.
After that, it just completely changed my thought process and my approach. It changed my outlook on life, first of all. Everything I did became urgent. I don’t know if I’ll be here tomorrow. Everything is urgent.
One in two men is diagnosed with cancer, one in three women. I walk through life like, “Listen, it’s morbid as it sounds.” I’m like, “It’s not a matter of if you’re going to get cancer. It’s just like, ‘When? At what age?'” It’s just so common. We really need to get a handle on something, and I’m so glad we have so many scientists really dedicated to that cause.
It changed my outlook on life, and then it changed my outlook on scientific approaches. I used to sit in scientific meetings, and it’s like, ‘Oh, we can use this drug. Let’s try this and that.’
Sometimes I would open my mouth and say, ‘These are people. Imagine what all of those drugs are going to feel like.’
I know with my lymphoma, I had four chemo drugs at each session. That just was not fun. The idea of like, “You really want to be able to treat your patients with the least invasive method. You don’t want to go so hard on the pain all the time. You want to find something that works, but it’s not so toxic to the patient.”
Then I also think I know what it’s like to walk around with cancer and not know that you have it. You think it could be anything else, and that applies to a lot of people.
When I’m out in the community and people will say, “Oh, I don’t feel like I have cancer.” Sometimes you don’t feel like it, but sometimes you get used to those nagging little symptoms that have formed over a few weeks or a few months. You never want to go off of how you feel when it comes to screenings.
Another thing, because I’m a cancer survivor, I have to go to my oncologist. But that’s always so weird to me. I’m in the lab and working in the hospital then, “Oh, it’s now my turn to go to the oncologist.” It’s just always weird.
When I went, they said, “Listen, we want to do a colonoscopy on you.” I was young. I wasn’t 40 yet. I’m like, “Fine. Another test.” So I did it. When I woke up, they said, “You know what? We found several pre-cancerous polyps.” I was like, “What?”
I was so happy that I did that colonoscopy that young. If I hadn’t had lymphoma, they wouldn’t have thought to do it that young. Now I know. I don’t wait as long as other people. Now I’ll be referred for a colonoscopy much more frequently than anybody else.
Don’t put off symptoms. If your doctor thinks that you have a reason to be screened for something, don’t be afraid because trust me, you want to be diagnosed at an earlier stage and save yourself some of the hassles, please.
Especially with prostate cancer because it’s curable if you catch it early. That’s literally life or death. You want to screen for that sooner rather than later.
Approaching conversations on cancer risks
I try not to freak out on him all the time. He’s 17 so it’s like, “Oh, everything’s fine.”
Just the other day, he texted me and said, “Oh mom, I’m having an allergic reaction to like 30 things.” Then I responded, “Oh my gosh, what are your symptoms?” Then he didn’t respond. Then I’m calling his girlfriend, calling every everybody to see, “Is he gone into anaphylactic shock?” I just assumed the worst all the time.
He’s used to, “Oh, mom’s just freaking out,” but I look at every symptom as like, “Oh my goodness.” He did have some swollen lymph nodes at one point. I thought it’s lymphoma because it’s hereditary. But it was not the case.
I don’t really talk to him because I take action. We’re going to see what happens when he becomes an adult and has to make decisions independently.
At that point, he knew his grandfather, who’s my dad. He was like, “Oh, well, he has cancer, and he’s okay.” I don’t know if he thought, “Oh, she has cancer. She’ll be okay.”
He saw my hair fall out and he saw me being sick and tired from the chemo all the time, and he seemed okay.
On my final PET scan, the day that I found out that there was no evidence of disease, I sat him on the couch, and I showed him the picture. Because at that point, my son is a little nerd like me, so he knew like, “Oh my mom. I’ve seen her cancer cells. There’s two nuclei instead of one.” He knew what the cancer cell looked like.
I said, “Let me show you the PET scan. This one, this is the before, and this is the after.” He said, “[gasps] there’s nothing there.” I said, “Yes.”
His shoulders just dropped. It’s like he sighed. I didn’t realize, in that moment, that he had been walking around like this for months.
I saw it, and I was like, “Oh my gosh. It’s the little boy Beck that I remember that’s worried for you.” I don’t think he worries about it anymore right now. It doesn’t seem like it. That’s going to be something interesting to navigate as he will not be missing any screenings.
Normalize these conversations
It’s super important. I hope it changes with younger generations because my sister-in-law just beat triple-negative breast cancer last year during COVID, and she’s only 40, the same age as me.
When she was asked about family history, it was difficult to think who had what cancer? I know it’s the same with me. People died, and you don’t really know what they died of.
I hope that really changes moving forward and we become more open to sharing. I know in my family and my husband’s family, prostate cancer is not limited to one person. It’s rampant. The more you talk about it, the more you normalize it.
It’s difficult because a lot of older generations may have had prostate cancer, treatments are not the same as they were then. Maybe you hear horror stories, and then the younger guys are like, “Oh, I really don’t want to do it.”
We really try to stress that the testing is different, the treatments are different, the outcomes are different. The side effects after the treatments are different because things are improving. It is important to talk about it as a family to know that your individual risks are based on your family members.
Patient Self-Advocacy
I am just so grateful that Al Roker shared his story like that. A lot of people know him, and they’re going to think, “Wow. He had this, and he’s doing well. I can get a screening for this. If I get that diagnosis, it’s not the end of the world. I can come through it on the other side.”
It’s important, and I recognize that importance. When we’re out in the community, I recognize my limitation. I’m a woman. I don’t have a prostate.
I can talk, turn blue in the face, but it’s not a one-person job. I make sure I show up with people who have been previous patients because men want to see somebody they can relate to that has been through and come out on the other side.
I really think support groups are a great thing as well for men who have been diagnosed with prostate cancer. Just seeing men talk about it and be open about it definitely helps with anything in life, for sure.
We see it with the COVID vaccine now, too.
One person in the family gets it, you talk about it, now the cousins get it. I was the first person in my family. Now everybody’s gotten it. But it’s taken weeks and weeks to get to that point. That’s an example of you just talk about it and then it normalizes it for everybody else.
Message to Black men cancer community
Well, that’s something I hear in the community a lot too. Men will say, “Oh, I don’t want to have this treatment because I’m afraid that I won’t be able to have sex anymore.” That is true for a lot of different treatments.
One thing I tell men, it’s funny, but it’s not, but I’ll say, “Listen, if you don’t treat it at all, you won’t be able to have sex anyway, and you’re definitely not going to have sex when you’re six feet underground. It’s just not going to happen.” I make sure that they know that, but that’s just more on the joking side.
There are nerve-sparing surgeries offered now where results are not the same as they were 10 years ago. Your chances of regaining that function are so much better. Al Roker spoke about how he was able to regain that function. So don’t let that hinder you.
At the same time, I’ve been a patient, and I firmly believe that it’s the patient’s choice. Some patients decide, “I don’t want to do any treatment.” It’s their life, and that’s totally fine.
I’ll never forget when I spoke to a man who had a very elevated PSA and a Gleason of 9, and he was like, “I don’t want to have anything done.”
He was in a support group, and other men—it was a room of all black men —were telling him, “Oh, I had this treatment, and I had that treatment,” and at the end of the day, he was like, “I just would rather just see what happens, and I’m just going to live with my decision.”
You just have to respect that at the end of the day. I don’t know if I could have done that before I was a patient myself.
That is an example of you just wanting somebody to be able to make an informed and educated decision.
If you know all that and that’s what you want to do, do you boo. Because you’re going to have to live with that. You should be allowed to make your own choice.
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