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.
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Ebony’s Stage N2 Muscle-Invasive Bladder Cancer Story
Ebony was only 45 years old when she was diagnosed with stage N2 bladder cancer. Having lost her own father at a young age, she had to process the fear of not being there for her 3 sons.
She then underwent MVAC chemotherapy and an 8-hour surgery to remove her bladder. As part of this surgery, part of Ebony’s small intestines were used to create a neobladder.
Ebony shares her cancer journey, including taking control of her hair loss, the experience of African Americans in the medical system, the importance of self-advocacy and support, and using her story to be a light for others.
Name: Ebony G.
1st Symptoms:
Microscopic amount of blood in urine
Increased to visible amount of blood
Pain when urinating
Weight gain in midsection
Diagnosis (DX): Urothelial muscle-invasive bladder cancer
Staging: N2
This means the cancer has spread to 2 or more lymph nodes in the region
Tests for (DX):
CT scans
Checking IUD for issues
Cystoscopy
Biopsy
Treatment:
MVAC chemotherapy
Methotrexate, vinblastine sulfate, doxorubicin hydrochloride (Adriamycin), and cisplatin
This interview has been edited for clarity. This is not medical advice. Consult with your healthcare provider for treatment decisions.
Introduction and First Symptoms
Tell us about yourself
Hi, my name is Ebony, and I was 45 when I was diagnosed with bladder cancer.
I am married. I have 3 sons. I am an engineer by day. I just want to live my best life like everyone else. Those are the biggest things. I really want to live my best life and help others do the same.
What were your first symptoms?
My initial symptom was after a visit with my annual gynecologist, and they noticed that there was blood in my urine [at] a microscopic level. I couldn’t even see it, but a microscopic level of blood in my urine. They referred me to a urologist to try to look into what was going on. [It] kind of freaked me out.
That’s how it started over 2 years ago, pre-COVID actually. I proceeded with the urologist. They couldn’t find anything. I had different scans [and] different scopes that were performed and initially couldn’t find anything.
He said, “We’ll just keep you on a schedule. You’ll just keep coming every 6 months, and we’ll check on you.” I didn’t have any other red flags. Generally very healthy. [I] never went to the doctor except for my physicals. [I was] not on any other medication, [and I had] no high blood pressure, cholesterol, diabetes, no other health issues. [I] was pretty active.
The doctor was kind of like, “We’re not seeing any smoking gun, so we’ll just keep watching you.” That’s how it started. [I] didn’t have any pain [and] no other symptoms.
Looking for potential causes
We looked at several things. We initially thought it was a UTI, so I was prescribed an antibiotic and then thought, “Okay, we’re good to go.” It kept going, so then the next thing was, “Okay, let’s check your IUD. Go back to your gynecologist, check the placement of your ID, [and] make sure that that’s in place.”
[I] did that. [The] gynecologist was like, “Yep, it’s good. No problems.” Then they thought we have to confirm what the source of the blood was. Is it just menopausal stuff going on? What’s going on?
I’ve read and studied that most women are misdiagnosed because I guess our bodies are a little complicated. People go grasp for the initial things that may be probable, but all of those things were batting zero.
He referred me to a kidney doctor to look at the functions of my kidneys, and all was well. I went back to the urologist, and they were like, “Well, we’ll just keep an eye on you.” That eye on me was a check every 6 months.
What scope did they perform?
I can’t remember the technical term right now, but it was a scope where they basically filled my bladder with liquid and checked. It kind of would magnify if there was anything going on in my bladder.
There wasn’t anything to be found. Generally, it made me feel like I needed to urinate. [It] wasn’t the most comfortable feeling. That was one of the initial scopes, and then also a CT.
How were you feeling through this process?
I wanted to trust my doctors to believe that they would know what was wrong. When the doctor was telling me, “Well, we don’t know,” I was like, “Okay, if you don’t know, yeah, I’m a bit concerned.”
He even told me at one point, “There are some people that over time, as they get older, their bodies function differently, and maybe that’s just you. I was like, “No bueno. No, I’ve never had this as a problem.”
I remember telling my husband, “I feel like the woman with the issue of blood, like biblically. It just won’t stop. I don’t understand.” At that point, a year passes, and now I can actually see the blood when I went to the bathroom.
Now it’s more prevalent, and my doctor is still saying, “Maybe this is just what your body’s going to do.” I was like, “This can’t be likely. This can’t make sense.”
I even started gaining weight, particularly in my midsection. I remember thinking I never gain weight in my midsection. With each of my boys, I gained 60 pounds when I was pregnant. But every time, I always gained weight in my hips and thighs.
For me to gain it in my tummy area, I was like, “This doesn’t seem right.” But even the nurse at the practice was like, “You’re in your upper-40s, mid-40s. Maybe that’s just what’s happening. You’re just gaining weight in a different way. I was like, “Yeah, no.”
I was very concerned because they couldn’t figure out what was going on after a year and a half. It got to the point where I was like, “If they don’t find something this time —” fast-forward, that was September 2021, ” — I’m going to someone else.” I also at that point had had the IUD removed. [I was] just trying to remove every possible potential cause, and we still couldn’t find anything.
Can you list those emotions you were feeling during this?
Confusion. Despair at some points because I just really didn’t know. I was wondering if there was some underlying something. I was Googling things [and] trying to figure [it] out. [I was] just kind of confused and lost as to how the professionals don’t know.
Honestly, I had never heard of bladder cancer. It never occurred to me as something to delve more into. To be honest, I don’t ever recall my urologist saying, “If you see this additional sign, then maybe we should dig more, or let me know.” I was very concerned and stressed about what this could be.
Finally Getting Diagnosed
How did you finally get a diagnosis?
The other thing was I’m not sick typically, and I remember actually coming down with COVID [in] August of 2021. Everybody was catching COVID, but still, I was like, “I’m never sick, and now all of a sudden, here we are.”
Then I actually started feeling pain when I urinated. I was supposed to go to the urologist [for] my normal 6-month check that August. Due to him being on vacation, we rescheduled the appointment. When we rescheduled the appointment, then I ended up with COVID, and so that appointment was pushed off to October.
I went in again, and he said, “You know what? We’ll go ahead and do another CT. Then we’ll see from there.” We did another CT in October. Then he called me in his office, and he’s like, “Something’s abnormal here. We’re going to need to have a surgical procedure because I see something.”
He also did that scope, the same scope that he did that year prior. In that scope, he saw something, which freaked me out. Then he’s like, “I actually need to see you in surgery in the next 2 weeks.”
I was like, “What? 2 weeks? Surgery?” My last surgery was, at that point, probably 12 [or] 13 years ago when I’d had my last C-section.
We had the abnormal CT, the extra scope that was abnormal, and then the surgical procedure to biopsy this growth that he saw to see more of what was going on.
Processing the possibility of cancer
That was in person. For that appointment to talk about doing the surgery (prior to the biopsy), I was by myself.He did [describe it as a growth or tumor], and I instantly thought cancer.
I was like a ball of tears, and the nurse that was with me said, “You’re going to be okay.” She was extremely comforting. This was a different nurse. She’s like, “I’ve been through this before. You’re going to be just fine.”
But at that moment, I remember thinking, “I’m going to die. What is this? How did we catapult from, ‘Not only it doesn’t seem like much, [but] this is probably what you’re going to always just deal with, because this is just the way your body is functioning,’ to, ‘We need you to have surgery in 2 weeks and dig further to understand what’s going on.’”
It was pretty traumatic by myself in the office, but the nurse tried to reassure me and tell me, “You’re going to be okay.”
What was the value of having someone trying to comfort you?
Honestly, I didn’t believe her, but it was a bit comforting to know that someone had been through something similar. I didn’t have my wits about me to ask more detail of exactly what she meant that she’d been through it, and I haven’t seen her since.
After that few weeks, the urologist ended up referring me to a surgical urologist, one of the top urologists in the area, to proceed with my treatment. While it was a bit comforting, I was still like, “Yeah, I don’t know that you can relate to what I’m going through. I don’t even know how you know what I’m going through. Did you really have this procedure?”
Did you feel a shift when you found out it could be cancer?
There were 2 shifts. That was one shift because I remember thinking, “I’ve trusted you for a year and a half to try to find something, and what was it about everything that has gone on in the past year and a half where you didn’t find anything?”
Of course, we trust doctors [and] trust that people are going to do things in our best interest. But I began to wonder what other signs were there that maybe you overlooked. I honestly was a bit angry because I thought, “I’ve been coming to you for a year and a half, and you haven’t seen anything. Now, all of a sudden, I need to be in surgery in 2 weeks.”
That was one shift, and then the second shift was when he told me specifically after the surgery that the growth was confirmed to be cancerous and that he wanted to refer me to someone else that could better help me.
Undergoing a biopsy on the growth
November 11th last year (2021) was when I had the surgery. I was extremely scared because even with my 3 C-sections, I was very alert in what was going on. At this point, I’m like, “Oh, you’re going to take me under?”
I’m just a bit paranoid about, like, am I going to come out okay? Then the fact that you have had a challenging time diagnosing me, and now you’re about to take me under to try to figure out what this is. I was Googling left and right [and] Googling the report to try to figure out, “What does this mean?”
That was on November 11th. Then we had plans for Thanksgiving to go visit family. I remember thinking, “You should be able to tell me what the results are almost instantly, even if it’s a week.”
But it was November 29th, 2021, before I found out that it was cancerous. The crazy thing was, in the meantime, I got this random text from another hospital not even in the state that was something about checking into the cancer center.
[It] freaked me out because at this point, it was in between me having the surgery and getting the results. I remember texting my husband, “Oh my God, does this mean I have cancer?”
But it was a total random text from a hospital not even in the state that we live in. He was like, “Ebony, don’t worry about it. That’s just a random text. It’s nothing.” But I was like, “This is way coincidental.”
Waiting for the biopsy results
It was like 6 in the evening when I received the text. I couldn’t call the doctor’s office because it was after doctor’s hours, so after the working hours. I remember calling the doctor’s office the next day, saying, “Hey, I got this random text. Does this mean that this tumor was deemed to be cancerous?”
The receptionist was like, “Oh, no, no, no, that’s not even affiliated with our practice.” But I was like, “Of all the times to get this random text… Is this the Lord preparing me for what’s about to come?” I’m thinking all the worst.
Nevertheless, we went to visit family for Thanksgiving, but the entire time, in the back of my mind I was like, “Am I going to get this result? When am I going to get the result? And is the result going to be one of my biggest fears?”
Fast-forward to November 29th. They called me in to come get the results. I remember thinking, “Okay, the fact that they’ve called me in can’t be good.” My husband went with me for that appointment, and that’s when I first saw the verbiage on the report to say that I had a high-grade urothelial, muscular-invasive bladder cancer.
I was like, “What? What does this mean? What stage? What?” I remember that was the second shift, where I was just devastated. I don’t know that I’ve ever cried like that after getting those results.
They diagnosed me with stage 2 urothelial muscular-invasive bladder cancer. I want to say it was staged N2 because a couple of my lymph nodes were impacted.
Next Steps After Diagnosis
Processing the full diagnosis
I remember my eyes just welling up. I couldn’t even read what was on the paper just because I was so emotional from what the diagnosis was. He was optimistic and trying to be encouraging in that visit.
I just remember thinking, “What if I hadn’t come back? I’m listening to you all, and you’re saying, ‘Oh, well, it should be fine. Your body’s just maybe designed to work this way.’ What if I hadn’t come back? What if I didn’t prioritize this visit based off of some of the other verbiage that y’all were sharing with me, yet me telling you something doesn’t seem right? What if I hadn’t come back? Now you’re telling me that I’ve got this aggressive tumor growing in my body, and now you’re telling me you’re going to refer me to someone else because it’s a little more complicated than what you thought. Really?”
Losing a parent at a young age
Imagine this. I’m a 45-year-old woman, married with 3 kids. Our sons at the time were 20, 13, and 14. When I was a senior in high school, my father passed.
When I heard the diagnosis, I instantly thought, ‘Here we go. I’m not going to be around for my children.’
It was a pretty quick sickness. I remember thinking, “He’s going to recover just fine.” But I didn’t know the seriousness of what was going on. I was devastated when he died my senior year in high school. There’s always been a part of me that has wondered, “What if that happens to me? What if my boys are left without me?”
I’ve gone through pretty much my whole adult life missing that presence. He wasn’t able to meet my husband. He wasn’t able to meet the boys. He wasn’t able to offer insight on different things. I wasn’t able to ask him questions like, “Daddy, what do you think about this? What do you think about that?” Just input that I would have loved to have received.
Worrying about leaving your kids behind
I’ve always wondered and prayed that that would not be my outcome. When I heard the diagnosis, I instantly thought, “Here we go. I’m not going to be around for my children. What are the things that I’ll be able to do so they’ll remember me, they’ll know me, [and] they’ll know my feelings for them? What can I quickly try to do where they will have fond memories of me?”
They’re still very young, and honestly, there are a lot of memories that I don’t have of my dad because I was young. My instant thought was, “Oh, my God.” I honestly was a bit angry with God.
I’ve had to do a lot of personal work to get beyond missing that presence of my dad and wanting him to be proud and wanting to accomplish certain things. That’s been a lot for me. To think that they would potentially be catapulted into this same space was extremely devastating and challenging for me.
I just remember my instant thought was, “How much time do I have? How much time do I have?” I didn’t know anyone with bladder cancer. I’m a bit of a fluke. The doctors would say, “You’re a unicorn. You’re checking all the boxes, [by] trying to live a healthy lifestyle. Yet here we are. You’ve never smoked. You’re not an older white male, yet here we are.”
It was extremely devastating for me because I remember thinking that my children are going to grow up without their mom. That was a space that I’ve always not wanted to be in because I hated having to experience it myself.
Telling your children about the diagnosis
I’m trying to think how we even came to how we were going to share, because I didn’t want them to worry. We decided not to share much. Initially, we weren’t going to share really much at all because my first appointment with the other urologist, it sounded like, “You’ll still keep your hair. Your hair may thin a little.”
I was planning to continue to work. I was really trying to kind of maintain that normalcy. Fast-forward [to] when we met with the hematologist. He was like, “Oh, no, boo-boo, you’re gonna lose all your hair,” which was extremely devastating. “You’re going to have chemotherapy or infusions every other week. After the second infusion, it’ll be extremely challenging for you.”
Hearing all those things made me say, “Okay, we probably need to share something.” My husband honestly did all the talking when we shared. I’m extremely emotional, and I’m a big crybaby. He was the one that shared. We didn’t discuss details of staging. We weren’t intending to, but the oldest one, who was 20, was instantly like, “Okay, what stage is it?”
We just talked as a family. This is the deal. This is what’s going on, but we will get through this. Like I said, he did all the talking because I would have been a blubbering mess. He did all the talking, and I honestly think that was the best part of it, that he was the one that kind of put a positive spin on it all for them.
How did your urologist describe the results to you?
It was a very short appointment. I remember him asking me if I had any questions, but I was like, “Yeah, I got all the questions, but I don’t know what questions to ask.” I don’t know if he was just struck by the amount of emotion that I was expressing.
It was just more of a, “I’m going to connect you to someone else that is going to help you better than I can.” I remember thinking, “Well, dang.” I was just so overwhelmed. I didn’t know what questions to ask. I had a ton of questions, but I really didn’t even know.
Of course, some of the main questions were, “How serious is this?” There was not any discussion at that time of treatment. No discussion about any of that. I didn’t really get into all of that discussion until I met with my other urologist.
Receiving treatment at Duke Raleigh Hospital
All of my treatments after that point were primarily through Duke Hospital in Raleigh, North Carolina. Honestly, that was probably one of the best decisions for me. It’s great because the treatment was relatively close to us, so we didn’t have to travel far.
After that diagnosis, there was a slew of appointments. I can’t even tell you how many appointments. Every day, it felt like I was at another appointment, and it was a whirlwind of appointments.
That surprised me because I had to go to different doctors for them to check my heart, to check my liver, to check all these different organs. The hematologist knew what my body was about to have to undergo. They were trying to make sure that my organs were going to be able to withstand all of these really harsh treatments that I was about to start taking.
Most of my treatments were at Duke Raleigh. The hematologist and urologist worked hand in hand to enlighten us on what was about to happen.
Ebony with part of her team at Duke Raleigh.
Receiving a binder of information to prepare you
My first appointment with the urologist was accompanied with this huge binder, this 3-inch binder of tons of information, including a section on hospice care.
All of it was about the medications that I was going to have to take, the potential types of urinary diversion, you name it. That binder was the gospel for me for the next several months. [It was] a little daunting to get that binder. Then there was another little pamphlet that had pictures of people, I guess, that had bladder cancer.
I remember thinking on the cover of that little pamphlet, “None of the people that have been diagnosed with this look like me.” There may have been one woman on the picture, but she wasn’t African American. Everyone on that pamphlet looked older and not like me, but I was like, “Okay, here we go.”
Was the pamphlet comforting, or what did you feel looking at it?
I looked at the different types of urinary diversions when I opened it, and I remember thinking, “Wait a minute.” I was actually kind of vain at the time. I was like, “Wait a minute. What is this? Does this mean I’m going to be left with a bag outside of my body? Does this mean I’m going to lose my hair?”
I was physically trying to think through what the impact was going to be. I remember talking to the urologist initially, and he said, “This is the new and improved one.” I remember him saying, “Your hair will likely thin,” and so I remember thinking, “Okay, I can manage that because I had a ton of hair.”
I was okay. Then right after his appointment, I had the appointment with the hematologist [the] same day. The hematologist was like, “You’re going to lose all of your hair.”
I just was devastated at the thought of, ‘How am I going to manage not having hair?’
I went from, “Okay, I think I can manage this,” to, “Like all of it, all of it?” He’s like, “Yeah, no, without a doubt, you’re going to lose all of your hair.” Again, I [was] just devastated, bawling in the doctor’s office. [I] can’t even read the material that they’re handing to me.
We didn’t tell the boys at that point. It wasn’t until for sure we knew I’m going to be physically impacted. I’m not going to be able to hide it per se. That’s when we decided to share with them.
Hair Loss
The importance of hair as a Black woman
As a black woman, actually it takes a long time for our hair to get to the lengths that we enjoy. My crown, as I call it. There’s a lot of pride and joy in my hair. Actually, for about 7 or 8 years, I had decided to become natural, so not having any chemical products in my hair, not having any relaxers to relax my curl pattern.
I had really worked hard to grow those chemicals out of my hair. [I would] keep cutting the hair and just growing out for it to be at its natural state. To get to this point, where it’s 8 years in the game of being what we call ourselves naturalistas, to find out now it’s all going to come out. Like, what?
Then I’m thinking to myself, “Is it going to grow back?” You hear stories, and you see people where it does grow back. I was like, “What does that mean for me? Is it really going to grow back?”
I just was devastated at the thought of, “How am I going to manage not having hair?” That was honestly the tip of all of the side effects that were going to come from it, but the initial thought was no hair. I’ve worked really hard to become a naturalista and take pride in this crown that I wear, and here we are.
It was incredibly devastating.
Can you describe the impacts with lack of control with identity?
I was really disappointed when I found out. I have a bit of a social media presence, too. I like to be out there and sharing with people how they can live as their best selves, how to motivate people, [and how to] encourage people.
I’m like, “Now everybody’s going to know. It’s not going to be my own personal battle, because I refuse to let this stop me from still being an encouraging force to people in my circle.”
I remember thinking, “Lord, I don’t know why you’ve given me this, but I’m going to choose to believe that it’s because you trust that I can still be a light despite whatever is going on.”
I refused. I’m not going to allow this to minimize my presence on social media. I’m not going to allow this to minimize the peace that I bring in my home. I’m not going to allow this to be that.
I remember talking to one of my sorority sisters, and she’s a breast cancer survivor. She suggested to me, “Ebony, I just challenge you, maybe you want to go ahead and cut it, because at least that part you have control over.”
I never had my hair in a short style, and I was like, “You know what? I think I will.” My first chemo infusion was December 22nd, and my birthday’s January 10th. My second infusion was going to be January 5th. I remember the hematologist saying, “After your second infusion is when your hair will likely come out.”
I remember thinking, “I’m going to be optimistic. It’s not going to happen for me in my second infusion.” I can’t remember the actual date, but between December 22nd and January 5th, I was like, “I’m getting my hair cut.”
I remember texting a close friend who owns a salon and was like, “Hey, I need you to cut my hair.” She was like, “What? You sure?” At the time, I didn’t tell her what was going on. When I actually made it for the appointment, I let her know, and she was like, “Oh my God, are you sure? We don’t have to cut it. We can just wait and see. Maybe it’ll just thin.”
I was like, “No, I’m ready to cut it.” It was a very short style. That was one of the best feelings that I had. I remember thinking that I was going to be emotional during the cut, but I wasn’t, because I remember thinking, “I’m going to enjoy this, because based on what the doctor is saying, I’m not going to be able to enjoy it for long.”
I remember getting it cut and coming home that night, and my husband started crying because he was like, “You’re really having to do this. Here we go. But we’ve got this. We’ve got this. We’re going to conquer the day.”
That was something he constantly said to me: “Conquer the day.” I’m a creature of habit. I will look far in the future and think, “Oh, but what if, what if, what if?” He said, “Uh-uh, conquer the day. Stay like a hitch. We’re going to stay right here, between right here and here. We’re just going to conquer the day.”
Getting my hair cut was huge for me in controlling the process. I want to say for my birthday, I still had some hair. I used to wear a scarf around my head just to kind of protect my boys from seeing. Literally every day, I would wake up, [and] there would be hair on the scarf [and] hair on the pillow. It got to the point where I was like, “I’ll just shave it.” Because, again, that was me exercising my control in this situation.
Your husband shaved your head
Yeah, he did. Honestly, that was the best. I remember him thinking, “We can take you somewhere else and get a cut.” I was like, “No.” I thought I was going to be emotional, honestly, in that phase. But I wasn’t. It was honestly freeing because I didn’t have to worry.
Ebony decided to shave her head.
It was coming out in handfuls. It also was denaturing my curl pattern, so my hair was sticking up on the side of my head. It was just not the most attractive. When he agreed to shave it, it was liberating because I knew, at least now, I’m not going to have to deal with seeing it come out. Seeing it come out was the worst part.
Once it was all shaved, I still wore a scarf around my head initially. Then we had a meeting downstairs at the kitchen table. My husband told the boys, “I just wanted to let you know we shaved your mom’s head and wanted to share with you what it looks like.”
We showed the boys. I took the scarf off, and I wondered “What are they going to think?” My oldest son was like, “Wakanda forever,” which was the best feeling, because I was like, “You know what? Yes. Wakanda forever.”
What did that moment mean to you?
I totally was thinking, “I’ve lost something. I’ve lost a lot, and my boys are going to look at me like I look abnormal.” But when my oldest was like, “Wakanda forever,” I honestly remember thinking [about] the movie. It took me back to the movie and how the women whose heads were shaved look like queens. [They] looked like royalty.
There was nothing that I saw in them that was a loss. He probably doesn’t realize it, but when he said that to me, it equated to me like, “Honey, there is nothing here that is a loss. You are still a queen regardless.” Like I said, he probably doesn’t realize it, but for me, that was reassurance that that’s what he saw.
Treatment and Recovery
What was your chemo regimen?
I would go every 2 weeks, every Wednesday, and I had 4 different drugs. The acronym was MVAC, and it was 4 different drugs. I would go in for my blood work at like 8 in the morning, and then they would administer the chemo.
None of it was administered at the same time. There was a series. I can’t remember the order specifically, but there were some drugs that were administered. One of them people affectionately call it the “Red Devil,” and I was like, “Nah, that’s the blood of Jesus.” Anyway, I would try to be very optimistic when I went in there.
When I would see the nurses, they were all suited up with things to protect them from the same chemo, the meds that they’re giving me. I’m like, “This isn’t a good sign.” They would start administering the chemo, [along] with some of the meds.
There were 2 meds that were known to cause neuropathy, and so we would ice my hands and feet while the med was being administered, which was a bit challenging as well because it’s cold. I would sit with my hands in ice and my feet in ice for as long as I could bear it, then take it out for a few minutes, and then submerge everything again for as long as I could while those meds were being administered.
Generally, I would hope for a window seat because I was always surprised at how many people were undergoing care in the infusion center. All of it was in the same place, all still in Duke Raleigh. I would go upstairs to get my blood work [and] go upstairs to get a checkup.
They would tell me about how my blood work was looking, and then I would go back downstairs for the infusions. I would pretty much be there all day until like 3 or 4 in the afternoon. Some gracious souls would bring us food.
One of my close friends set up a meal train for us. People had signed up, and they knew every Wednesday she’s going to have her infusions. People would bring food for dinner on Wednesday nights. That was every other Wednesday for 6 infusions.
It ended up being 12 weeks. From the beginning of December — so through Christmas, my anniversary, my birthday, Valentine’s, all these big markers for me, I was having to go through all of these treatments — until the beginning of March.
How did your doctor describe the treatment regimen to you?
The urologist talked mostly about what the entire treatment would look like. The urologist talked beginning to end. The hematologist specifically talked about my chemo. I knew that there would be some type of surgery at the end of all this.
Actually, what they told me was, “You’ll probably do 2 to 4 infusions.” On the day of my second infusion, my chemo doctor was like, “You’re doing really well with this. We’ll actually go ahead and continue, and you’ll have 6 infusions.”
I came in thinking, “I’m halfway. I’m going to get through today. That’s going to be halfway.” Then he was like, “No, boo-boo, we’re going to sign you up for 4 more.” That was another emotional day because I remember thinking, “Wait a minute. You’re telling me I’m doing well?”
He was like, “Well, yeah, that means your body is tolerating this. We are intending to zap this cancer as much as possible before you have surgery.” Again, that was devastating because I was just like, “I thought we were doing good. We’re close to the finish.”
What the urologist explained to me was that once I was done with my infusion, then we would have to have a surgical procedure. That surgical procedure would absolutely mean the removal of my bladder because of the type of cancer that I had.
Once it was very clear that the tumor had gotten to the muscle wall of my bladder, the bladder has to come out. There’s potential spread to other organs. We were very concerned about that. I had to do additional scans to see how far potentially it spread.
Those additional scans confirmed that it only spread to lymph nodes in the immediate area. At that time, the urologist thought we may actually have to proceed with a hysterectomy in addition to bladder removal, in addition to whatever urinary diversion they would have to do.
I remember thinking, “Can’t we get a bladder? Like, can I get something donated from somebody? Surely, I don’t have to lose [it].” It seems pretty extreme.
I remember another breast cancer survivor telling me, “Ebony, at least it’s not breast cancer.” I remember thinking, “Girlfriend, no shade on whatever else you went through, but I’m about to lose a bladder. I’m about to potentially have to wear a bag outside of my body.” We don’t even know yet what the outcome is going to be, and I can make a choice.
The other concern I had with my doctor [was], “Wait a minute, how many women have you done the surgery on? I know you typically do this on older white men, but how many have you done [like] this? I need to see statistics.” The engineer was coming out in me at that point, and I was very concerned because I was reading, Googling.
I asked the doctor, “Is there a support group that I can connect with?” The nurse said, “There is, but honestly, Ebony, the people that are going to be in that support group that’s through this medical center are likely not going to look like you. You’re not going to be able to relate to [them].”
I was like, “Another day, another devastating assessment.” But then my husband was like, “Chase on the case.” I never even thought about this because I was so emotionally triggered. He looked on social media and found a group for me of women with bladder cancer, which was huge.
While there are no doctors or medical professionals in there, it was just comforting to me to know there are other women out there. It was a very small group, but there were other women out there. I can go look at their posts [and] see what treatment they chose.
There were 3 different types, 3 different potential urinary diversion surgeries that I could have. [I was] just trying to figure out what their quality of life was after their surgery. That was a little bit more about what he shared and how we connected the dots on what I wanted to do.
Importance of hearing from people you can relate to
The doctor can say all day, “You’re going to lose your hair, but it’s going to grow back. Your nails are going to turn black, but they’re going to grow back.”
It’s so incredibly helpful to know that there is someone else, a woman like you who’s probably married, who has kids, [and] who’s concerned about the effects of chemotherapy on her reproductive organs.
I wanted to see if people were able to return to their previous level of quality of life. You have a doctor saying, “You’re going to be fine.” Hearing someone else say, “Look at me. Yes, I’m fine. Yes, I can still run. Yes, I can still go to the swimming pool.” That was extremely comforting.
What were your options for removing your bladder?
There were a few options, actually. As far as what science dictates, there are 3 different options. My surgeon made it very clear that he did 2, that there were 2 options.
I could have the bag outside of the body. There’s a more technical term for it, but I can’t remember. In my brain, I was like, “Okay, that’s the option. Bag outside of my body that I would need to empty.”
Then there was an Indiana pouch, which my doctor didn’t do, and then there was the neobladder, which is what I decided to go with. The key thing that he let me know was even if I decided on the neobladder, in the surgery, they would have to determine if my body was the best candidate to undergo specifically the neobladder diversion.
I’m skipping way ahead, but even literally right before the surgery, like a day [or] 2 days before the surgery, I was marked for the procedure that would make me have to wear a bag outside of my body. I had a physical marking on my belly because they actually wanted to see how I sit, like the folds of my tummy, in the case that my intestines weren’t deemed viable.
The neobladder consists of taking a portion of your intestines, your small intestines, and creating a new bladder. If they determined in the middle of surgery that that small portion of my intestines was not viable to be used as a bladder, then that meant that they would have to punt and go back to the bag-outside-of-the-body option.
I would not know until I woke up from surgery what I ended up with. My prayer was neobladder. That was ultimately what I decided to go with, but he also made it very, very clear that the neobladder surgery is incredibly invasive and much more involved and a longer recovery time.
I was like, “Yeah, no, that’s what I want. We’re going to figure this out.” After researching and seeing the image, he also made it very clear that a lot of people, like from surveys, 50-50 will say that their quality of life is back to where it was before the surgery.
Ebony on the day of the surgery.
It’s pretty much split down the board. Some people love the neobladder. Some people love the other diversion (ostomy). I decided to go the neobladder route. That’s an 8-hour surgery because they have to do 3 different things: remove your bladder, take some of your intestines, create a new bladder, and then reconnect everything.
How long was the surgery?
It was 8 hours. It may have been a little bit longer for me. My husband told me recently, that apparently when they do the surgery — I didn’t remember this data point — you’re inverted.
My surgery was a robotic procedure. There are 5 incisions on my belly now to do all of that, and it blows my mind sometimes. I’m like, “That’s all? For all that you just did in my body, 5 small incisions?”
They inverted me, apparently, during the surgery. When I came out of the surgery, I was incredibly swollen. It kind of really concerned my husband. They were like, “That’s normal. She’s just been inverted. Yada, yada, yada.” The surgery itself was between 8 and 9 hours.
Recovering from the surgery
In all the materials [and] that huge binder, it talked about so many things. It talked about the meds that I was taking. I’ll definitely talk about the continence piece, but I was taking so many meds and steroids to circumvent the side effects of the chemo. That was just one thing already.
There were other sections in the binder to talk about what could happen after the surgery. One of those things was you could be hypercontinent [and] lose all ability to control how you use the bathroom. Those were the fears that I had.
Then also [it covered] how it could impact your sexual relationships, your sexual relationship with your spouse. I just remember thinking, “Okay, look, this is a whole lot more than what I initially bargained for.”
I would find myself stressing for what the outcome would be. That’s when my husband would come back and say, “Right here. We’re going to conquer the day. We’re just going to conquer the day.”
I was extremely concerned about [if] I [was] going to have to wear products to manage through the day. I work in a manufacturing facility. I was wondering how my clothes are going to fit. Am I going to have to have additional things to use the bathroom? Am I going to have to change what I wear? I usually would wear fitted things, and so now am I going to have to have this bag that’s going to dictate [that]? Am I still going to be what I thought was attractive? You name it. I thought all those thoughts.
Recovery in terms of sexual health
Some of my biggest fears started with the chemo because I also started experiencing hot flashes. There were instructions as far as after you have chemotherapy to not engage in sexual relationship because of the chemo and potentially endangering your spouse or whatever.
I remember thinking, “As a woman, am I going to be able to help you meet your needs? Are you going to be disappointed still being married to me? Because now this ‘for better or worse’ is looking a whole lot worse than when we started 16 years ago.”
He reassures me even now, “Bae, the same guy that helped you through this cancer is going to be with us as we work through getting you back to where you feel comfortable with different things.” He doesn’t pressure me. It’s just more of a, “I’m patient. I’m here.” That’s been extremely comforting as I try to figure out how to get my body to work.
How long has it been since the surgery?
The surgery was March 30th. I was in the hospital until April 27th. I came home for 4 days and then was back in the hospital with sepsis for another week and a half. That was extremely challenging.
I knew the doctor said the recovery period would be difficult. Even still, when I came home, I still had bags hanging from my kidneys because we were trying to figure out my kidney. My right kidney decided, “I don’t know if I want to work right.” That was a bit challenging.
I had a nephrostomy tube and an external bag that I would wear to help drain urine out of my right kidney. That was all the way until June 19th. I wasn’t feeling very attractive. [I] wasn’t feeling like my best person. That [was] on top of a lot of bone pain from the chemotherapy.
My husband tried his best. He was home with me the entire time. He took leave from his job. Literally from December until June, we didn’t go back. Both of us went back to work the week of Independence Day. He was with me the entire time.
It was funny because when we went back to work, our sons were like, “Wait, you’re going back to work?” It was incredibly comforting to me to be able to be home when they came home from school. Even though I wasn’t feeling up to cooking, [it was comforting] for us to still eat dinners as family when I felt able to do so. It’s been a lot.
My husband kept encouraging me to try to stay active as much as possible. That activity sometimes was just walking. Literally, when I came home from the hospital, it was walking for 10 minutes, walking around the house with the physical therapist, just to halfway get my mobility back after atrophy from being in the hospital for so long and having issues with my heart also while I was in the hospital.
He’s been extremely patient from a standpoint of, “I’m just here with you to figure it all out.” That’s been incredibly reassuring.
Finding Support and Advice
Importance of finding other patients who you have more in common with
Looking in that social media group, [I was] trying to just scroll and see who I can relate to. Even still, as I was scrolling, while there were women in the group, because it’s a group for women with bladder cancer, there weren’t any African American women. I hadn’t found one until on the day of my first chemotherapy infusion.
I have some sorority sisters that actually went and found the representative colors for bladder cancer. I didn’t even know there was a ribbon for bladder cancer. I knew about the pink ribbon for breast cancer. I didn’t even think that there are ribbons for different cancers.
They had Googled, I guess, on the side and found out what the colors were: blue, gold, and a royal purple. They knew that I was going in for my first infusion. In our separate chat on the day of my infusion, they start posting pictures. They all have on some version of blue, gold, and purple.
I’m like, “I don’t understand,” because our college colors are blue and gold. I was like, “I’m not getting it. I don’t understand.” It wasn’t until someone said, “We’ve got on our colors for you, Ebony,” and then they sent the ribbon.
I was like, “Oh my gosh.” I was so flattered, and I was just sharing with them, “Hey, y’all, this is my first infusion day, if y’all can be in prayer.” Not only were they in prayer; they all decided to be on a united front and share that with me.
I collected all of their pictures, put them in a collage, and shared it in this social media group with the women to say, “I’m just so grateful for my sorority sisters, who are standing in agreement with me today.”
There’s a hand gesture that we use, too, to indicate our sorority. From that picture LaSonya found, [it[ turns out LaSonya is part of the same sorority. [She] was like, “OMG, hi, sorority sister. We’re here together.”
That was so encouraging because I was looking for someone that looked like me. I’d scoured Instagram, trying to find different hashtags, [but I] hadn’t found anything or anyone that looked like me that was fighting and winning at bladder cancer. To find her was huge for me, because it’s like, “Yes, we can absolutely identify on even more levels.”
What does having LaSonya mean in your life?
It’s so hard. Number one, nobody wants to get diagnosed. No one wants to hear the dreaded C, right? Of course, not to downplay breast cancer. You see a lot of stories. I’ve unfortunately had a lot of friends that have been diagnosed with breast cancer.
Because more friends have been diagnosed with breast cancer, you instantly have someone that you can think of that you can say, “Hey, here’s my friend such-and-such. If you have any questions or any parts you want to relate to, she’s here. You can connect with her.”
With bladder cancer, I couldn’t find one soul that I could say, “Hey, what are you doing? How are you feeling about losing your hair? Are you going to wear a wig?” Just all that. Honestly, it wasn’t like there were that many different questions that I would ask her.
It just was an instant, “You know everything that I’m feeling. You can relate specifically to the loss of hair. You can relate specifically to darkening complexions.” [The chemotherapy] also made certain parts of my skin darker
“You can relate specifically to all those things. You’re taking likely the same medications that I’m taking.” She was actually like a month ahead of me in her journey, so I was watching her as she was going through her journey and how optimistic she still was. I was like, “Okay, you can do this, Ebony. You can do this.” That was huge for me.
Becoming a light for others
I want people to know you’re not the only one. I have fought through this. Unfortunately, there are going to be people out there — I mean, I had people coming up to me and telling me, “Some of the side effects of chemotherapy are your food is going to taste like metals. You’re not going to want to do yada, yada, yada.”
Then I said, “How do you know this?” “My husband died from it.” Thanks, I don’t want to hear those stories. I want to be the evidence, the example. I try to tell people, “I do consider myself a miracle, and if you’re ever looking for the evidence to help encourage you, let me be your evidence. Your current-day 2022 evidence that you can fight this and win.”
Knowledge and advice from other women
One of the doctors in the practice, I remember reaching out to her and saying, “Wait a minute. He’s done this surgery on men. Am I going to be good?” She’s like, “Oh, absolutely.” She actually ended up giving me another name of another doctor within Duke that I could also reach out to.
I did not end up reaching out to the other doctor because the practice really comforted me. This practice, honestly, has spoiled me. I don’t even know if I want to go back to a regular doctor because they seem to be so genuinely concerned about my welfare [and] genuinely wanting to help me.
One of the things that comes with when you have the neobladder is self-catheterization. Everyone’s outcome may be different. Some people may only have to catheterize at night. Some people may have to self-catheterize during the day.
I remember not even knowing that my urine came out of a different hole. I didn’t know. Having the nurse share with me, “I will help you find your urethra. You can try it at first. Here’s the DVD. You can look this up.”
I remember propping, being in the bathroom for the first time and having the laptop with the DVD loaded, trying to get a mirror, trying to get this catheter, and trying to figure out where to stick it. I felt like I’d struck gold when I finally was able to empty my bladder with this catheter.
It was helpful because she talked with me. I said, “Are there any things that I can do prior to surgery to help in this recovery?” She talked about strengthening my pelvic floor by doing the Kegel exercises. I hadn’t heard anything about Kegel exercises since I was pregnant like 13 years ago. I was like, “Okay, that I can do.”
Then she talked to me about finding my urethra prior to the surgery, because likely after the surgery, I would be in pain, which was another great piece. I kept putting it off. I literally found my urethra maybe 2 days before surgery. I was like, “Okay, you’re a grown woman. You’ve done things. You’ve birthed 3 children. You should be able to do this.” I had to psych myself up [and] have the pep talk.
It was very helpful to have women in the practice that could help me work through that. I said that I was marked for the urostomy bag. We even talked about different types of panties or undergarments, bathing suits, just different things that would make me feel comfortable with my quality of life if that was the route that we ended up with.
You don’t know, again, until you wake up out of surgery. [It was great] having those women present to help me find my urethra [and] to help me work through those emotions of what happens if I do have to have a hysterectomy, which I didn’t. What happens if? All the ifs. That was extremely helpful.
Advice for dealing with a neobladder
Know that you don’t have to do everything. As women, we’re used to doing everything. Let your body heal. Don’t be in a hurry to do all the things. Make sure that you stay active, even on days that you don’t want to.
Have an accountability partner that will help you stay active. Even if it’s walking 10 minutes a day, and then, in the following week, you’re walking 12 minutes and 15 minutes. Having someone meet you to say, “Okay, girlfriend, let’s go walk.” That activity was huge for me, even if nothing more than just getting out.
I had a playlist that was also encouraging to me. On those days that were rough for me, I would put that playlist on, and that would typically help me feel better. Those were some of the main things.
From a vain sense, because I keep talking about vanity, I had several loose dresses for me because I had that extra bag. I remember one of the first things when I went home from the hospital was, because I wasn’t expecting to have this extra bag, but I just wanted to go to Target. I remember not having clothes. Some of my dresses were shorter prior to, and so I needed a midi length that was loose.
I remember going to Walmart and just having dresses to wear where I still felt pretty. I also had comfortable shoes as well. My husband [and I] ordered some extra sneakers because despite all of the extra things to try to prevent neuropathy, I still have neuropathy in my feet.
Initially, I just needed comfortable sneakers to be able to get around. Not going overboard and buying a ton of stuff, but having a couple of things where you still feel cute. It’s funny because after you have a baby, they tell you you’re not going to lose all the weight immediately, and they tell you to have comfy clothing.
That, for me, was extremely helpful, and having those couple dresses to be able to [go] if I just wanted to ride to Walmart, because that’s literally what we were doing half the time.
Then when I built up the stamina to walk a little more, literally, we would walk to Target of all places, and then just walk through the aisles with the buggy to help stabilize me. My youngest son was like, “Why Target?” I was like, “Everybody loves Target.”
You got your popcorn. You got your Starbucks. You got just a normalcy. I wouldn’t even buy anything most days. Just walking around, feeling somewhat normal, was helpful for me.
Transitioning to the neobladder
There are tons of concerns because you could potentially have a UTI. I guess we’re highly susceptible to UTIs. I had issues with my kidneys. There were a lot of complications with that, but the biggest thing as far as recovery was training my neobladder.
Now you’ve got this neobladder. It can only hold so much, and so you have to train it. There was a schedule that was also in that binder that was shared with me on how to empty [it]. I would have to empty my bladder on a certain cadence.
I remember the first time I tried to do it, it took me a minute to kind of get the sensation down to understand how I actually empty it. It’s hard to describe, but I remember thinking, “Okay, Kegel exercise. Kegel, okay.”
It was the relaxation. Doing the exercise itself and relaxing the muscle is what helped me. That’s how I would use the bathroom. Anyway, there was a schedule for that. Every 2 or 3 hours, I would initially be trying to empty my bladder.
Then that period of time extended overnight. I would try to always catheter before I went to bed. I would also wear a pad when I went to sleep because I was nervous about wetting the bed. I don’t have to do that now. I do wake up in the middle of the night still to empty my bladder. Sometimes that includes a catheter at night just because it takes me time to empty the bladder.
Even now, sometimes, I’m a bit paranoid if I go to a public restroom, even at work. This is something I’m still working through. When I go to the bathroom at work, I have so many meetings that are back to back.
I can go in a stall, and another woman can come in the stall. She can empty her bladder and be done. Literally, I’m in there trying to do exercises to empty my bladder. I always wonder, “Is the person next to me thinking, ‘What’s going on over there?'” I’m still working through that, but I’m comforted in knowing that I’m alive. I need not worry about what someone else is thinking is going on in my stall.
I’m grappling with, “Do I want to tell my manager?” Sometimes I may be late for a meeting because I’m emptying my bladder. I haven’t had that conversation because I’m trying to work through that.
Sometimes, because there are meetings after meetings after meetings, I don’t have [time]. I have to literally make the time to go empty my bladder. That’s a bit of a challenge for me because if it gets too full, there’s potential for infection and all the things. I’m still working through that.
When I’m home, it’s easy. I can just go to the bathroom [and] not worry about how long I’m in there emptying my bladder. I still, straight up, have a hard time finding my urethra without a mirror. The nurse reassured me eventually it’ll be like a tampon. It’ll be where you can find it without even looking.
I’m looking forward to that day, because honestly, it is a challenge. It’s things that you don’t think about. When I travel and I’m in the hotel room — this may be TMI. I don’t know. When I’m in the bathroom at home, I have a self-standing mirror that will help me find what I need to find so that I can fully empty my bladder.
When you travel, you don’t typically have a self-standing mirror, so you’re either trying to prop your leg up or trying to find your phone, but you don’t have that many hands. You literally need a third hand to use the catheter, have something to locate the catheter, and then aim. It’s a challenge, but I’m working through that, and I am just conquering the day.
Reflections
How important is self-advocacy?
At the end of the day, no one knows your body like you do. In hindsight, I wish I’d possibly gone somewhere else sooner. I just challenge everyone out there. At the end of the day, doctors are doctors, but they are practicing medicine. They’re practicing, so they will not know everything. You know your body more than anyone else.
All I can challenge anyone out there that’s debating or [wondering], “Is there something wrong? Should I do more?” Yes, you absolutely should. Don’t debate. Don’t delay. Don’t let months go by before you inquire or search more.
Again, always remember that you know your body more than anyone else. Don’t be fearful of what the outcome can be, because the sooner you find whatever is going on, the sooner you can start treatment, the sooner you can do the life-saving work so that you can be around for those that love you.
Healthcare system and the experiences of African Americans
It’s unfortunate that this is the case. I know for African Americans, we don’t see a lot of ourselves in a positive light. We don’t see us conquering things on a basis. What we do see is negative outcomes.
We see a lot of loss or, “It’s just the way it is. This is just the way it’s going to be [and] the way it’s always been. No one’s going to help you. No one really cares about you. You can be lost, and people would care less.” If you can’t afford something, you’re doomed to whatever you can piece together.
When you’ve seen that for generations — sometimes, [for] people who are not African American, it’s hard to relate. But when all you see is something negative, when all you see is, “This is the outcome. This is just the way it’s supposed to be,” it is extremely hard.
Again, I know it may not make sense. It’s extremely hard, though, for you to envision that someone does care. It’s extremely hard for you to envision that you can win. You can beat this. You can succeed. This is in every area.
I think what the medical industry can do is to put more faces in the forefront of people who are doing well, who are receiving the treatment, who have found their way, [and] who are winners.
Put people out there not only from people who have won the fight, but put people out there who are open and willing to help people win the fight. We need to see that the system cares about us. We need to see that, because for decades, we’ve seen so many systems that don’t.
Do you still question why this happened to you?
No. It’s crazy because it’s just been a year. It honestly hasn’t even been a year since the diagnosis. I keep like looking at my watch like, “Okay, no, it hasn’t even been a year. What a year it’s been.”
Maybe it’s Pollyanna-ish, but my belief is that God trusted me to go through this and be positive regardless. To go through this and show people how to overcome in the face of death. To go through this and show people that I did and they can, too.
There are times when I’m like, “I don’t like certain things.” I don’t like the whole catheter thing. I don’t like the aches in my body. But again, I remind myself, “Grace, girl. It’s not even been a year.”
I’ve had so many people message me since I shared on social media last December. They’ve either shared that they’ve received a diagnosis, not necessarily bladder cancer, but they’ve received another cancer diagnosis. They’ve been motivated by what I’ve shared.
I remember thinking when I was going through, “Lord, just get me through the surgery. Let me just get through.” It seemed like it was so far between November 29th and March 30th. It seems so far, and I still had no idea all the craziness that was going to happen after March 30th.
I just was like, “Just get me through to the end.” I thought the end was going to be, “Let’s get through the surgery, and you’re going to be good.” I had a friend share with me recently, “Ebony, maybe that was just the beginning, like the beginning of helping other people [and] the beginning of changing lives. The beginning.”
Again, I wanted to be like, “Whoa, okay, let me live my life now.” I’m looking at it now more so like, “Okay. God, me and you, we’re going to share.” I’m one that’s open to sharing. I could be wrong, but sometimes I think that he thought he could trust me to share the journey and be an encouragement to others.
What is your last message to readers?
I debated over how much I wanted to share on Instagram, to be honest, because I was like, “That’s a little bit open. People can find anything.” I remember thinking, “I couldn’t find anyone when I was looking. I’m searching all the hashtags, [but I] couldn’t find anyone.”
In general, what I would share with people is I know we have a lot of things that we go through in life. I used to think my weeks were rough prior to this, and I’m like, “Psh, that ain’t nothing compared. You’ve been there, done that.”
Anyway, I think it’s important for people to recognize that whatever they’re going through — it might not be a cancer battle. It could be a divorce, it could be depression, it could be job loss, layoff, or issues with your kids. It can be so many things.
Whatever you’re going through, you don’t have to put everything on social media, but know that social media could be a tool to help change the life of someone that you don’t even know just because you were willing to be transparent enough to say, “Hey, I’m making it through this, and I believe you can, too.”
Whatever it is, whatever you have going on, if you can, share a bit of it. I know people say social media is fake or it’s not the real deal, but I think that there are people out there that if we continue to share the real deal and share how we’re making it, it can help others.
I truly do believe that’s why we’re here: to help each other and not just kind of live in a silo. If there was anything I would share, that would be to just know that you have a voice, you have a light, and to let your light shine because it will absolutely help someone else.
Symptoms: Irregular occurrences of seeing streaks of blood in urine, specific type of pain when bladder is full, unexplained weight loss, urinary urgency, malaise, fatigue Treatments: Chemotherapy (gemcitabine), surgery (TURBT: transurethral resection of bladder tumor)
When it comes to cancer, the truth is different people need different approaches so equity refers to people getting what they need based on what they’re presenting with. That distinction is really important.
Dr. Kim Rhoads with her family, pre-pandemic
What drew you to medicine?
Stephanie Chuang, The Patient Story: What initially drew you to medicine and what drew you eventually to the area of cancer?
Kim Rhoads, MD, MS, MPH: Before we had the DEI language, I was in one of these pipeline programs in 1985 and 86. My mom happened to work at the School of Medicine at UC San Diego and she was in administration. They used to call her The Oracle. She was friends with the woman who started, I would argue, one of the first pipeline programs for underrepresented groups in medicine.
At 14, I worked in a lipid metabolism lab at UC San Diego for two summers in a row. I remember telling my mom, “Don’t get excited. I’m not going into medicine.” But the money was really good.
People in the lab took an interest in me and I liked science so it was fun for me to be in a laboratory. I already had a little bit of experience and the folks in my lab encouraged me to think about medical school. I was not thinking about that.
I majored in linguistics. I was not interested in being in the rat race. But as a junior in college and thinking about what a linguist does for a job, I decided to pursue the coursework to go to medical school.
I knew that it was a big commitment and that I needed to be making a conscious choice about going to medical school.
What personal experience really shaped you?
Stephanie, TPS: You were primed from a very young age, being in a lab at 14. You pursue medicine and, at some point, something personal happened that really shaped you.
Dr. Rhoads: I’d taken all the coursework [for medical school], but I decided to take a year off between college and medical school. Because I had worked in a lab, I was referred by my lab PI (principal investigator) to a lab in Washington, DC. I decided to move for a year [to] take some time and figure out, “Is this really what I want to do?” I wanted to take some time to make a decision [and] casually take the entrance exams.
I worked in an HIV lab at the time and my family is from Virginia, so I had a car. I would drive to Virginia on the weekends and spend time with my favorite cousin and my favorite aunt.
During that period, once I decided to apply for medical school, I was talking to them about interactions black people have with the healthcare system. My aunt was expressing that something was missing from her interactions with healthcare. I remember distinctly, she said, “I just want to be able to go to a clinic where when you walk in, people know your name.” But what I realized is she was asking for community. She wanted to feel like she was part of something, not like she was going into a situation where she would be judged for the choices she had made or how she lived her life.
I don’t want to be on a treadmill and then get to the end and find out that this isn’t what I really want.
What I didn’t know at the time was she had breast cancer. Nobody in the family knew. By my second year in medical school, the cancer had become so advanced she was not even offered surgery. She was treated with chemotherapy and died in the hospital. All contrary to having [a] choice, being supported, [and] feeling that warmth people need in a vulnerable time.
Because I’m [a] first-generation college graduate and [the] first doctor in my family, I thought, “Let me make a phone call. Maybe I could translate,” because I know that medicalese is being spoken and that people are probably not understanding what’s going on. When I called the hospital in Virginia, I was given a little bit of information. I asked if there was a specialist involved and was told, “General surgeons take care of breast cancer and we’re not operating anyway because the tumor is too large.” A lot of dismissive interaction.
By the end of the conversation, the person on the other end of the phone said, “Are you a nurse?” Because clearly, I had enough medicalese to get by as a second-year medical student. I said, “No, I’m a medical student,” and they hung up on me. That really stuck with me. This is not how it’s supposed to go, especially in that vulnerable time. That set me on a course of my original pathway in research, understanding the experiences of black women facing breast cancer and [their] relationship with surgeons.
What is that relationship like? Is it kind and caring? Did you feel taken care of and that somebody was looking after you? I remember one of the questions was, “Did your doctor make a U-turn at the foot of the bed?” It got me thinking about the fact that she never got radiation, which she needed based on the description of the tumor. That’s when I started to look into and think about it.
Many years into my surgical residency, comparing the different settings I had trained in — a Kaiser, a private institution, the academic center, the safety net hospital, the Veterans Administration — and seeing all kinds of different care provided for the same problem and making me wonder: Does this have anything to do with the difference in resources that are available? Going back to my aunt and asking the question: Was there radiation available at that hospital? As it turns out, there wasn’t so that’s why she wasn’t offered radiation. That started to form how I think about disparities because my suspicion was that you get the kind of care you get based on the institution that you select. And that brings us back to our question of inequities. Are people able to get what they need based on where they choose to get their care or where they’re forced to get their care based on their circumstances?
What is health equity?
Stephanie, TPS: What does health equity mean, Dr. Rhoads? We hear this now constantly. We hear about DEI in healthcare. What does that actually mean on a human level?
Dr. Rhoads: Health equity refers to everybody getting what they need. I think we started [with] liberation movements with the language of equality. But when it comes to cancer, the truth is different people need different approaches so equity refers to people getting what they need based on what they’re presenting with. That distinction is really important.
The word is now being overused. It is now being substituted for disparities. When we put the word inequity on top of disparities, what people are trying to refer to is the fact that these are addressable because if something is inequitable, it means it can be shifted towards equity. But by putting it over and covering over disparities, what we are effectively doing is trying to erase a state of being that exists as a result of inequity. It is the final common pathway of inequity. You end up with disparities. As long as we have inequities, we’re going to have disparities. But what we want to stay tuned for is the elimination of disparities by intervening to promote equity.
Stephanie, TPS: At the end of the day, words really matter and sometimes, it’s not really clear how powerful they are.
As long as we have inequities, we’re going to have disparities. What we want to stay tuned for is the elimination of disparities by intervening to promote equity.
What have you learned since then?
Stephanie, TPS: You were very conscious of this from the very beginning, even before you officially started seeing patients and becoming a surgeon. In the many years since then, what have you learned? Has it changed over time or are we still at the same place, depending on where you go for care?
Dr. Rhoads: Are we still there? Yes. The answer is yes. Most people don’t know because we don’t have a Consumer Report on what hospital you want to go to. There is website [for California] – CalHospitalCompare.org. You plug in your zip code, find the nearest hospitals, and look at their quality ratings. There were some efforts to try to promote better outcomes by ranking quality and letting providers know where the high quality is, letting the insurance companies know where is the high-quality care. There were several studies around 2005 [and] 2006 that came out showing that nobody was using those rankings. Referrals were being made based on personal networks.
My suspicion was that you get the kind of care you get based on the institution that you select… People don’t know that where you go determines what you get.
Whenever you talk about personal networks in [the] field of higher education, you know that those networks are going to be segregated. You can imagine how that can play out. Especially with the history in this country, for example, of black doctors only being allowed to train at certain institutions, only being allowed to practice in certain areas and in certain hospitals, [and] not being allowed to join professional societies with white physicians. That then is going to determine where your patients can go to get care.
California hospitals are still segregated by race [and] ethnicity but also by insurance status. That all came from policy, redlining, exclusion, and segregation in all of those layers — education and where you practice. That’s where patients are able to go.
Have things changed over time?
Stephanie, TPS: What you described, people might think, “Oh, that’s from before,” but what you’re saying is it’s very clearly still here.
Dr. Rhoads: It is. My aunt was treated in a safety net hospital and that’s the hospital that has to take you as a patient, regardless of your ability to pay. Your county has designated where those hospitals are. Those hospitals largely serve patients who have no insurance or Medi-Cal (when we’re talking California) [or] Medicaid (when you’re talking nationally).
If you rewind back to [the] ’64, ’65 civil rights era when Medicare and Medicaid legislation [was] being advanced at the federal level, the American Medical Association — which was very exclusive at the time, did not allow participants who were of color — [was] advocating against these policies. I don’t understand why, that doesn’t quite make sense to me. But the National Medical Association, a professional society created by black physicians out of exclusion, [was] heavily advocating for the passage of this legislation, in particular Medicaid, because they knew that those dollars were going to come to the hospitals where they were working and would have the opportunity for their patients to be covered by some kind of public insurance.
Dr. Rhoads with San Francisco Supervisor Shamann Walton
Now, what you’ve got across the country are hospitals that serve a disproportionate share of patients who have Medicaid or no insurance at all. What you’ll find is those tend to be your safety net hospitals so their revenues are not that high because they’re being paid by an insurer that doesn’t reimburse at a high rate. For example, Medicaid pays somewhere between $0.05 and $0.15 [per] dollar. If your total hospital bill is $10, you may get $1.50 back to the hospital to reinvest in their plants, property, and equipment.
Cancer care is expensive. A radiation machine costs money. A specialized CAT scanner costs money. If your revenues are low, those are not the investments you’re going to be making. That’s how you start to see a segregation of patients of color using high Medicaid hospitals for cancer care and then having to get whatever is available. That may not be the high-end PET scanner, may not be the CAT scanner that can slice the pancreas into thin enough slices that you can see a teeny little tiny tumor. If you need radiation and that hospital doesn’t have some kind of agreement with a place to provide radiation, you’re not getting radiation. That has a direct impact on outcomes.
When we looked back in about 2014 [and] 2015, we used publicly available data and asked which hospitals provide care to a high percentage of different racial and ethnic groups. We had what we called white-serving, Hispanic-serving, black-serving, [and] Asian-serving.
The one very notable thing is that white-serving hospitals do not overlap with black-serving hospitals and that they only overlap with Asian-serving hospitals. Hispanic- and black-serving hospitals are completely segregated. There are hospitals in California we can show you that have had zero black patients over a period of 10 years.
It really is segregated in a way that has not been amplified. We were looking at what was called minority-serving, so that was any non-white-serving hospitals. Those do not overlap with white-serving hospitals either. It is a pretty segregated system in California.
Across the country, minority-serving hospitals are black-serving hospitals. In California, minority-serving hospitals are Latino- or Hispanic-serving hospitals. Those are just some ways that we have looked at the data to understand the landscape of segregation that is still persistent in our healthcare system in a very liberal and very diverse state.
We used publicly available data and asked which hospitals provide care to a high percentage of different racial and ethnic groups… It really is segregated in a way that has not been amplified.
Why do people go where they go?
Stephanie, TPS: Sometimes, when we talk about these things, about race as a social construct and not just biology, I thought a lot of this is socioeconomic. If you live in a certain area and have limited means, you’re limited in terms of options. The most accessible hospital may be a safety net hospital. But you’re saying this is down racial lines. Can you talk about that? I know there’s another layer there. We talk about socioeconomic, but it’s very clear what you just described.
Dr. Rhoads: Socioeconomic factors — like income, education, [and] employment — track along racial lines as well. It’s hard to pull them apart.
We did publish a series of papers asking the question, “Why do people go where they go?” As you suggested, maybe you just live near the safety net hospital so that’s where you get your care.
We asked racial and ethnic minoritized communities [and] populations in California, “Would you use a National Cancer Institute-designated comprehensive cancer center?” That’s where the best outcomes, all the high-quality services, [and] all the specialists are. Then we also asked, “Would you use a high-volume hospital?” Because practice makes perfect, right? If you’re taking care of a lot of cancer, then your outcomes tend to be better. We’ve shown that that’s true.
We started off by asking, “What is the median travel distance that people will go in California to get colorectal cancer treatment?” We found that the median travel distance was five miles. Now there are all kinds of discussions that can be had about that. Five miles doesn’t seem like a lot. If you have a car, that’s short. If you’re on the bus, it might take longer. If you don’t have the access to either of those things, five miles is impossible.
We used that as a marker then we said, “What proportion of each racial and ethnic group lives within five miles of a National Cancer Institute comprehensive cancer center or a high-volume center?” It turns out that racial and ethnic minorities are the groups that live closest to these centers because they tend to be in non-rural areas in California. They live closer.
Then we said, “Of those who live within five miles, are you using them?” A lower percentage of racial and ethnic minorities who live within five miles of an NCI center or of a high-volume center were using them.
What’s going on here? Is it because some people are actually going where they can get better quality and going to a safety net hospital or high Medicaid hospital? Because that’s where the clustering of racial and ethnic minorities [is]. We asked, “Is this because of insurance?” The answer is no. Insurance did not move the needle. Insurance was not as statistically significant in its correlation. It did not explain this difference.
Then we asked, “Is it travel distance?” We counted everybody in because some people will be further than five miles out and travel distance did make a difference. So that was comforting because it makes sense. It has face validity.
But then we asked, “Is it possible that the neighborhood characteristics determine where you go?” We used education as the socioeconomic factor and it overrode travel distance. It neutralized the effect of travel distance. Travel distance did not matter. What mattered was [the] neighborhood education level. I know when I give this presentation on this series of papers, a lot of people will say, “I knew it.” They just don’t know better. But lots of people know better and still don’t pick the highest quality hospital, including insurers [and] referring providers.
The way I try to explain this is we looked at neighborhood-level education. It’s not the education of the individual; it’s the characteristics of the neighborhood. What we say is you are like your neighborhood. You’re like your neighbors in terms of your health behaviors because that is a marker of socioeconomics: What’s your neighborhood like? In your neighborhood, you’re in range with everybody else because you can afford to live there [and] you chose to live there. What we’re saying is neighborhoods develop patterns of where they get their care and that trumps quality and travel distance.
So that’s where my aunt went. If that’s where my grandma used to go, where my mom went, then that’s where we’re going because that’s our hospital. The problem is that if you peel back another social determinant — which is redlining and say, “Where are people allowed to live?” — then you become like your neighbors and you establish a relationship with the hospitals that serve that neighborhood. And those tend to be the safety net hospitals for racial and ethnic minorities.
Stephanie, TPS: Wow. You did ask all of the important questions. If not this, then what? While you were talking, I did think, “Oh, it must be the insurance.” And it’s not. The community events build a bridge of true understanding, not just, “You don’t know any better. You should be going here and this is why.” None of that.
What’s embedded in that history is a relationship and what that offers an opportunity to do is to have a different relationship.
Dr. Rhoads with her family
What are the solutions?
Stephanie, TPS: What are the solutions?
Dr. Rhoads: What’s happened is a relationship has been developed, whether that relationship is for better or for worse. You might not be aware that you could get better outcomes somewhere else because that’s always where everybody’s gone. The crazy things that happen there that don’t make sense are perfectly acceptable because that’s the relationship and that’s where you’re talking about history.
What’s embedded in that history is a relationship and what that offers is an opportunity to have a different relationship. But what about now? And what about going forward into the future? That is, I would argue, the foundation of Umoja Health — building a relationship and not building a relationship like it’s a destination. Understanding that relationships evolve over time.
Trust is the equity of relationships. You build it up as you go through good and bad things together. Not just all good things, but the bad things, too. I think [what] we have forgotten in medicine, in healthcare, is our own humanity. We’ve forgotten that we are also simply people. I don’t care if you’re green, purple, brown, [or] whatever. That’s the one thing I have in common with everybody. We need to be making relationships with communities that are around us in the same way we would be thinking about and making relationships with our friends.
We don’t have to tell them all our personal secrets but we shouldn’t be thinking about those relationships as, “I have all the resources and you do not.” There’s that way in which we otherize the patient. It happens in medicine, just in that doctor-patient interaction. The doctor is coming with some information. The patients come in with a lot more information than the doctor could ever have because they’re living in that body every day. But there’s some way in which we exalt the doctor, [as if] the doctor could never be the patient, which is a ridiculous proposition.
Similarly, as institutions, when we partner with [the] community, we otherize them. There’s a lot of paternalism. There [are] things that we want to hide and don’t want to say. Failing to recognize that.
If we came with transparency and said, “These are the hard parts. Let’s work on the hard parts together,” that is going to build trust faster. Then it all looks good and everything we do is great.
We need to be making relationships with communities that are around us in the same way we would be thinking about and making relationships with our friends.
How can we start the relationship on the right foot?
Stephanie, TPS: What are some things people could say to be more transparent and kick off the right conversation to lead to a good relationship?
Dr. Rhoads: First of all, it’s an acknowledgment that this one interaction is not our whole relationship. This is the beginning. I will see you again. In the process, as a human being, I will be making some mistakes. You will be making some mistakes. We will have some miscommunications. But the commitment to the relationship is that we will work through those together. I think that’s what can happen in the doctor-patient interaction.
In the institutional interaction, there also needs to be some humility. We talk about truth and reconciliation. We want to do the reconciliation; we don’t want to do the truth. That’s the hard part. Part of that is getting out of the building and being in community in whatever way you can. You don’t have to be in community as the doctor. Be in community just as an individual human, experiencing life in the same geographic territory as other people but obviously having a different experience. I think that’s what helped Umoja move along.
I also think people buy into Umoja and link into Umoja because even though it’s focused on COVID for the moment, it came out of our relationship with our partners around cancer. They asked us specifically to focus on COVID when the pandemic hit and we said we will do that because we committed ourselves. Year-round — not just when cancer is a problem. Non-transactional — we’re not here just because there’s a study and we need you to get in our study and diversify our study. We’re here because we want to be in partnership. It’s year-round, non-transactional community engagement.
I don’t think people really thought about the non-transactional part. They think about being nice. It’s not about being nice. It’s about being on a shared mission and sticking around when times get tough.
We need to build relationships and that’s where you’re going to get people wanting to be part of the solution.
When you get caught in a problem that gets posted on social media of your institution or a representative of your institution doing something that none of us want to see happen, what needs to be done is a confrontation of that behavior, an admission that that was not only wrong but is not what we are intending to do, and to sit with the community that’s impacted and listen as they express their frustration. Then figure out together how you can take action to avoid it in the future. It doesn’t mean that we’ll be perfect. Again, there’s a disclaimer. We’re going to continue to make mistakes. But what you’re committing to is continuing to work together. That’s the investment that is absent in all this DEI and DEIA conversation — the commitment to humility and transparency is what is always, always missing.
With Umoja, we’re out in the community. I’m wearing an Umoja T-shirt just like the volunteers who are there, just like any other medical provider volunteer who comes out — we all look the same. It gets me back to what my aunt was looking for. She’s looking for her neighbor to be at the clinic, to be the person to welcome her. When [you] take away that self-exaltation, holding ourselves more important than other people because we have special knowledge, you end up with the ability to connect with people. For the person coming into that setting, you also get rid of the feeling like they’re going to be judged for their life choices. If they feel like they’re judged, they’re going to lie about their life choices. They’re not going to be totally forthcoming. They’re not going to feel that they have permission to be fully who they are. And that’s where I think we’ve gone wrong with all of healthcare.
We do not train healthcare providers [to see] people in their full humanity without judgment. We provide rules of what’s good and what’s bad, and then you judge the people who are doing it wrong. Then if you layer racism in there, you have a quicker judgment [of] different people because there is a belief that they are inherently not good or inherently better than other people. Racism can go both ways. It’s not just thinking people are bad. It’s any judgment at all.
We need to build relationships and that’s where you’re going to get people wanting to be part of the solution, wanting to promote your study, wanting to participate in your study, because that’s not the primary thing you asked. The primary thing you asked them for was a relationship.
Racism can go both ways. It’s not just thinking people are bad. It’s any judgment at all.
How can small steps lead to big changes?
Stephanie, TPS: What you just said is really powerful. This piece about judgment is huge and that’s what you cut through when you started Umoja. You were in the community. You were leading. You were modeling. Something as simple as not wearing a UCSF shirt. It’s a simple decision but it sends a message.
Because of the timing, COVID is where a lot of the attention was paid. Can you give an example of how what seems like small steps and small decisions can actually really change someone’s mind if you really want to get them involved?
Dr. Rhoads: I’ve been doing community engagement work since 1993 and in 2020, I had a number of eye-opening revelations.
We started Umoja as United in Health District 10. It was an offshoot of Unidos en Salud and I always have to give credit to Diane Havlir for the brilliance of bringing COVID testing into the community when people didn’t have access. We were working in Bayview, southeast sector San Francisco — a large African American population, relatively speaking to the rest of the city — and then Sunnydale where we picked up Pacific Islander communities and then Latino population all throughout.
I remember having a conversation with my department chair and saying, “It really strikes me that the tents for the testing efforts were all just white tents. There was no signage anywhere that said Public Health Department or UCSF and I think that’s actually why people were willing to come.” That was my suspicion.
Then to bolster that, a participant I was speaking to — I had no idea she had gotten tested at our site — brought it up and said, “The only reason I answered your survey questions was [that] my neighbor was the person asking the questions.” Throughout setting these pop-ups, we would track the volunteers who are working the site: Do they match the demographic distribution in the neighborhood? Are we capturing the neighborhood people? Are we engaging the neighborhood people? So that was a big deal when she said, “I only answered because it was my neighbor. Otherwise, I wouldn’t answer any of those questions.” The trust was already there. The relationship was already there so that gives us an advantage.
Engaging people in the process changes how people perceive who you are.
Once we became Umoja Health in late 2020, people were coming out to work together who had never worked together before. I didn’t know because there were these community-based organizations [that] would come together under this umbrella. Thank you to the Brotherhood of Elders Network who opened the door.
We would get out into the field and I would have to say to people, “I know you’re really happy to see people, but please don’t hug each other.” It’s still COVID. There was joy inside of the pandemic and that joy was for us, by us, or FUBU work. Community saving the community. Community delivering the services. Community being valued for what they bring to the table, which is a relationship we don’t have.
That relationship translates because what you could see happening in the informational sessions we were doing in between the service events was people really understanding COVID in their own terms, in their own ability, to explain why social distancing mattered, why wearing a mask mattered, what is exponential spread… People just started to get it on their own. And that was huge. I realized these organizations suddenly are working together and have networks that we haven’t even seen.
By participating in delivering the services [and] setting up the site with COVID safety in mind, these people are going to go home to their families, they’re going to be in their social settings with their friends, and they’re going to be talking like this because it’s part of what they’re doing. It’s not because they’re now a doctor. It’s not anything formal. It’s the informal influence, the informal authority that they have within their groups that they could use to start promoting uptake and participation in COVID mitigation.
By the time we finished our first run of Umoja in the fall of 2020, African American people had gone from being the lowest testers in the county to being the highest testers in the county. We didn’t even work the entire county, but we had people in our informational meetings taking that information to their networks. People started really emphasizing and highlighting as credible messengers.
Those are examples of how engaging people in the process changes how people perceive who you are. Now, we get a lot of calls like, “Somebody has cancer. We need a second opinion. How can we get into UCSF?” People who would not have otherwise even considered talking to UCSF. These are people from our Umoja community, COVID-focused, calling us about cancer.
It just goes to show that the relationship is what matters. They perceive that we care because we’re willing to come out, to employ community people, [and] to make spaces for the community to be an active and primary part of the solution. We’re not looking at people as needing transportation and child care or you’re poor and you don’t know anything and we’re ministering to you. No, we’re saying we need what you know because that’s going to help us get the information out and that is what is going to help move us truly toward health equity.
Stephanie, TPS: Everything that you just described is so powerful. Those were really incredible examples. At the core of it, it’s about really building real relationships. People can feel it. They know. They know when you’re approaching them and they feel like, “Are you coming in thinking you’re going to save me?” Let’s go in equally because that’s what we are.
How can we avoid otherization?
Stephanie, TPS: For people who feel, “Well, that’s the other community,” what’s the message about why it’s so important for everybody? We’re not only talking about lifting black Americans or Latino Americans or Asian Americans or Pacific Islanders. What is that message to people who don’t get that part?
Dr. Rhoads: Otherization is really central to how I think about any of the work that we do in any community. You can be a short white man who is not aggressive and be otherized. There are a million ways to be otherized. What I go back to is the way to avoid otherization is to recognize your own humanity because that is the link you have to every single other person on the face of this earth. And I guarantee if you spend more time, you’ll find other similarities and other commonalities so you don’t have to separate yourself in that way. I think that’s core to what the problems are in healthcare.
What I would also point out is Umoja Health in Alameda County focuses on the African American community but in San Mateo County, it focuses on the Pacific Islander community and the Latino community. It’s whoever comes to the table. [It] really is people-powered. It is whatever resources. It is the actualization of stone soup. Whatever you can bring to the table, that’s the soup we’re making and that’s the soup that we’re having.
The way to avoid otherization is to recognize your own humanity because that is the link you have to every single other person on the face of this earth.
If what you’re bringing to the table is your ability to access resources from other spaces, even better, but it allows an opportunity for everybody to fully be who they are and not have to be other. We’re in this together. Everybody is susceptible to COVID. Everybody can actually come to the table and not be judged, “Well, you’re not bringing anything and so we’re here saving you.” No.
You can volunteer. You can encourage people to come to the site. You can educate people with what you’re learning in the meetings. You can invite people to the meetings. Everybody can contribute something. Until we get a handle on that, on believing that, and on operationalizing that, we’re going to be stuck.
For now, the paradigm we have is some people are better than others and have more than others and they need to give to or minister to those who have less. It discounts the importance of the other. Baba Arnold Perkins, who used to be the director of the Department of Public Health in Alameda County and who is now the chair of the Community Advisory Board for our cancer center, says, “Everyone is a piece of the puzzle and every piece is important.” And recently when I talked to him, he added to that. He said, “And every piece is equally important.” And that’s what I think we really need to recognize.
Dr. Rhoads with Baba Arnold Perkins (rightmost)
Think about doing a puzzle. Get a 5,000-piece puzzle. You’re just tooling along. It’s looking really good. A piece falls on the floor and you don’t notice until you’re done. When that piece is missing, it ruins the whole puzzle because it’s missing and it’s only one piece out of 5,000. So every piece is equally important.
Everyone is a piece of the puzzle and every piece is equally important.
Baba Arnold Perkins
How can we deal with the lack of trust?
Stephanie, TPS: Some people say this lack of trust or even distrust specifically when we’re talking about the black community, as the generations go on with younger people, slowly that’ll take care of that. In your experience, you met a range of people in terms of age with the same lack of trust.
Dr. Rhoads: Trust builds at the pace of the relationship. Think about this: If you don’t have a relationship, why would you expect to have any trust? You shouldn’t. Think about your own personal relationships. You just met somebody. You don’t automatically trust them. It takes some time of building up how you work together [and] how you relate to each other.
Over the generations, you might think [that] young people are unaware because this happened so long ago. But actually, the young people are where it’s at because their minds are flexible. They’re open. They’re willing to see disparate treatment, privilege, and access to opportunities. They can see it.
What I have observed is that for the younger people, it makes them uncomfortable. They want things to be different. We did hear the vaccine was developed too quickly. There [are] nanobots in it. Don’t trust the government. We saw that across age groups — no question. But I do think that there’s an opportunity because young people are now interested.
Climate change is another disaster that adults are creating for them. Racial discrimination. Killings of various kinds of people who are at a disadvantage at the hands of police. They’re seeing that for what it really is. I don’t hear from younger generations trying to smooth it over and say it’s just miscommunication. That’s definitely something that happens in generations who maybe don’t want to hold the responsibility for what we have created. The young people didn’t create it so it’s easy to critique it.
It’s not really a lack of trust; it’s an appropriate response to a history of untrustworthy behavior. There are reasons to be suspicious, which is why it matters to be in community, outside our walls, because that’s where you can start to break down things that happened in the past because now, something’s happening in real-time.
It’s not really a lack of trust; it’s an appropriate response to a history of untrustworthy behavior.
Dr. Rhoads with cancer survivor Norman Tillman
What are the next steps?
Stephanie, TPS: There are so many cancers that disproportionately impact black Americans compared to other groups. I know it’s across health care and life, really. But in cancer specifically, what do you see as the next real feasible steps? Bringing the hospital out into the community, really showing that we care, and trying to build real relationships. Are there additional steps that we can take collectively to help address the inequities and the disparities?
Dr. Rhoads: If you address the inequities, you’re going to get rid of the disparities. I’ve written some papers to look at [the] delivery of care and when you get the right care for the right stage of disease, the differences by race [and] ethnicity go away. We’ve shown it in colon cancer, acute myelogenous leukemia, gastric, and pancreas cancer. We know that if you address the inequities, you’re going to get back to differences. And differences are okay because innately, we are different from each other. We’re not going to live the same number of years. Those differences are acceptable. It’s the disparities where you didn’t get what you needed and therefore you’re dying early — that’s what we’re trying to eliminate. Addressing inequities is going to get us there.
There is a process that is in play. Building the relationship is the beginning of the process. What happens when you’re in relationship with [the] community is the questions start to be centered around the community instead of centered around institutionalists. Because we’ve made the barrier between the institution and the community more porous, we can actually receive input and guidance on what research questions should we be asking.
What are people observing on the ground that we’re unaware of and are assuming a sterile condition under which these disparities are happening? For example, higher rates of cancer in younger people. What do we know about what’s happening on the ground? Often, we don’t know anything. We assume everything’s equal.
The next step is having the community influence the research questions. We’re working with Cancer Grand Challenges, which is an international award to the United Kingdom and the US. The National Cancer Institute and Cancer Research UK combined to fund 11 projects. I’m involved with one of them and the question is about cancer promotion. Are there environmental exposures that cause a mutation you’re already carrying that your body is keeping in check? We are all carrying millions of mutations right now, but we’re not a million cancers. Are there environmental exposures that are selecting a mutation and saying now you’re going to start growing, you’re going to be a tumor?
I think that kind of research is going to be so importantly informed by advocates and community partners because they’re going to be able to tell you stories about what’s happening in their neighborhoods. When we see cancer clusters, we can start asking very specific questions about cancer promotion in those specific spaces. Again, that’s another example of centering the community in the research question. We can apply our scientific approaches, which are all very cutting-edge, but we’re applying them to questions that are directly relevant to people who are living regular lives outside of our institution. The next step is developing questions that really hit home so that our results are relevant to the people that we think we’re trying to serve and be in partnership with.
If you address the inequities, you’re going to get rid of the disparities… you’re going to get back to differences.
Differences are acceptable. It’s the disparities where you didn’t get what you needed and therefore you’re dying early — that’s what we’re trying to eliminate.
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.
Mical was initially diagnosed with stage 1 prostate cancer at 37. They learned after prostatectomy it was an aggressive stage 2.
He had no symptoms, and he wouldn’t have found out at an early stage if not for a guardian angel of a doctor who decided to include the PSA test in his regular blood work.
Now, Mical uses his voice and his story to advocate for prostate cancer awareness, especially in the Black community, conversations about family health history, and the importance of early screening.
Name: Mical R.
Diagnosis:
Prostate Cancer
Staging: 2
Symptom:
No symptoms, caught at routine physical with PSA test
Treatment:
Radical prostatectomy (surgery)
Since being diagnosed with prostate cancer, my focus has shifted, and I’ve become super passionate about spreading awareness and advocating for more awareness, certainly in the Black community.
As a Black man, I feel that if I had certain things on the awareness side, then my journey could have looked a little bit different.
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Pre-diagnosis
Tell us about yourself
I have a twin brother. I’m a family man. I have two daughters. I’ve been with my wife for 18 years. We’ve been married 16 years.
I was a teacher for many years. I still work in higher education as an instructor. I’m passionate about reading and writing. That’s all I’ve ever taught, English language arts. Love writing.
Since being diagnosed with prostate cancer, my focus has shifted and I’ve become super passionate about spreading awareness and advocating for more awareness, certainly in the black community. As a black man, I feel that if I had certain things on the awareness side, then my journey could have looked a little bit different.
I’m doing my part so that men don’t have to go along not knowing the disparities and not knowing that black men are two times more likely to be diagnosed and 2.5 times more likely to die from the disease. It’s become my life’s work to do this.
I would have thought that if I had cancer that I would have been able to sense it.
Initial doctor’s appointment
[I’ve lived] in Houston my whole life aside from college. My whole family moved to Austin [when] I got a job promotion. That was 2017.
In 2018, we finally got settled. We [needed] to find a doctor because prior to moving, I went to the doctor every year. I was accustomed to going to my annual wellness visit at a minimum. My wife is from Austin. My in-laws recommended this primary care physician because they’ve been her patients for 15 to 20 years, so she came highly recommended.
My wife and I couldn’t get in. We kept calling to try to get an appointment. They were booked up. My mother-in-law said, “I’m going to text her and say, ‘Hey, I’m trying to get my son-in-law and my daughter.’” The doctor responded, “You tell the front desk that I said make it work.” That’s how I arrived at this doctor. This is key for me.
[On] my very first visit, she [needed] to know [my] family history. At that time, the only family history I knew was that my aunt, my mom’s only sister, had been diagnosed with breast cancer just weeks before. My paternal grandmother had recently died of stage four lung cancer — breast cancer that metastasized to her lungs.
This was a regular checkup. She did the blood work. But unbeknownst to me, she also tested my PSA levels. When the blood work came back, everything was great but she noted, “I’m concerned about your PSA levels.”
That was the first time I ever heard the word. I actually had to Google. What is that? I was just going for my annual physical, to establish this relationship. I had no symptoms at all, not one. I was very healthy [and] young.
I Googled it and I never got alarmed because I didn’t have symptoms. I always felt like whatever the concern is, it’ll be ruled out because I feel great. I would have thought that if I had cancer that I would have been able to sense it.
She told me, “I want to put you on an antibiotic for a month,” because she initially thought it was prostatitis, which is a prostate infection. I did the antibiotics for 30 days. She retested my PSA. She said, “I’m not satisfied. It came down a little but not enough. I want to put you on an antibiotic for another 30 days.” I did the 30-day round again. After that 30 days, when she tested my PSA, the levels had gone up higher than they were initially.
I cannot remember what the number was. It wasn’t crazily high but it was higher than it should have been. It was cause for alarm. In a period of two months, from whatever it was initially, it went up. It didn’t go down so that’s alarming.
At that point, she said, “I think we should send you to a urologist so that they can have a further look.” I did everything she told me to do. I went to the urologist that she referred me to.
They did a biopsy. A week later, I found out. At that time, they told me it was stage one prostate cancer. But we ended up finding out after the surgery that it was an aggressive stage two.
I always tell people that I used to think that I moved to Austin for a promotion, but I really think I moved to Austin to save my life.
What makes that doctor so good?
What makes her so great for me [is] that she comes highly recommended and they love her so that helps me feel more comfortable. [The] first time that I ever met her, I felt like [I’d] known this lady forever.
She’s intentional about being present, really listening and engaging, talking to me about other things, just getting to know me, and not making me feel like I’m one more [patient]. We know doctors are busy but I’ve been to so many doctors where I feel like [there’s] no time to connect so that’s what’s made her so special for me.
I call her my guardian angel. Essentially, she’s the person that diagnosed. She’s the reason that we’re here because I can almost bet that if I hadn’t met this doctor, there was no reason for me to get this PSA test if I wasn’t of age. I had no symptoms. It’s nothing but God.
If I didn’t meet this doctor, I can guess how things would have turned out.
I always tell people that I used to think that I moved to Austin for a promotion, but I really think I moved to Austin to save my life.
The night I found out my diagnosis, I called her and I said, “Hey, I just wanted to update you. It’s cancer.” She said, “Let’s pray,” and we prayed right then. She’s not a black doctor. She’s a white woman. Some people might assume maybe there was a cultural… no, she’s a white woman.
I call her mom, honestly. She 100% gives me that energy. I asked her, “What made you take my PSA levels? What made you do that?” She said, “I’ve just been noticing in the five years prior that younger and younger men are being diagnosed.” She’s probably just been reading literature. She’s up on the latest news and that’s what made her do it. And I’m grateful for it.
What did you know about prostate cancer?
I never thought anything. I’m sure I saw a commercial or something but a personal connection, never. I don’t know that I even knew anyone who had prostate cancer, besides maybe someone on TV.
It couldn’t hurt if you did the test and [if] it’s fine, then it’s fine.
Importance of knowing your family’s medical history
She said that because she noticed that younger and younger men [of color] were being diagnosed that it couldn’t hurt, which is true. It couldn’t hurt if you did the test and [if] it’s fine, then it’s fine. I also assumed that telling her about breast cancer on my mom’s side and my dad’s side may have just helped to make that decision.
This just goes into — and I can only speak for the black culture — we don’t discuss family history. We really don’t discuss things at all, but we certainly don’t discuss family history.
After I had surgery, I was back at work [and] I was on the phone with my dad’s only living brother. [I] found out that [he] had prostate cancer five years before me. My parents actually knew that he had it and they knew I had it. But even at the point [when] they found out I had it, they still didn’t tell me.
Men just don’t like to talk about this stuff, period. Men are not crazy about going to the doctor. Even if a man knows something’s going on, some men won’t go.
That also goes into why I choose to be such a big mouth about it because we’re just not doing ourselves any favor. This is not helping to move the needle forward by us keeping it to ourselves. We have to stop being such a taboo thing.
Men just don’t like to talk about this stuff, period. I’m just speaking for men. Men are not crazy about going to the doctor and this is a disease that affects men. I think specifically for prostate cancer that would be one of the leading reasons why most men feel like it makes them less of a man or they just don’t feel comfortable sharing it.
I’ve met so many men who I know have prostate cancer because I had it. But if I didn’t have it, they probably would have never told me that. I try to speak out for all of them because, at the end of the day, nothing is more authentic than an actual patient experience.
Doctors can get on here and they can say all of the amazing words. No one told me about this [and] I was going to the doctor. That’s a separate issue for some men because some men refuse. Even if a man knows something’s going on, some men won’t go to the doctor. But I was going to the doctor. And so for me, if I was aware of that health history, then I could have been advocating for it well before when this doctor just chose to do it.
If I didn’t meet this doctor, I can guess how things would have turned out. I would have still been going to the doctor but no one would have [chosen] to check it so it would have looked dormant until stage three or four. I’m so grateful for the way it happened and I have to do the work and be boots-on-the-ground grassroots because my life is essentially spared.
Getting a biopsy
Before this, the only surgery I’ve ever had was when I was in college to have a lymph node removed from [the] left side of my chest. When they said I needed to have a biopsy, I really didn’t understand what that was until I was there and it was happening.
They biopsy portions of my prostate. I can’t remember how many pieces they took, maybe four or five. Then based on that, they were able to see that cancer was present. At that time, it was stage one. But we later realized once they dissected my prostate after surgery that it was an aggressive stage two.
In black men, it can lie dormant and it can also be aggressive, which was exactly what happened to me.
Diagnosis
Getting the official diagnosis
It was seven days from the time I had the biopsy. The thing is, I don’t know if it was God keeping me sane, but I genuinely went through all of that — from the time that I met that first primary care physician all the way up to the results — whole time in between, I never ever got rattled. I never wondered, “Could it be?”
I consistently felt great. I felt good. I feel like I’m pretty in tune with my body. If there was something going on, I would have had a symptom, right? But it wasn’t until after learning more about this disease that it presents itself in different ways.
In black men, it can lie dormant and it can also be aggressive, which was exactly what happened to me. I had no symptoms but my cancer was an aggressive form, which is something that’s just wow.
I needed to go back to the doctor to get my results. Prior to that day, I had already gone to this urologist twice. The first visit was the consultation to talk to me about everything and then the second visit was the actual biopsy. Both times, I pay the co-pay.
On the third visit, I know that I’m simply going to pick up results. That morning at work, I was just talking to my colleagues. “I don’t think I should have to pay another co-pay because I’m really I’m not getting a service rendered. I’m just picking up results for a service.” They’re like, “No, I don’t think you should.” I’m like, “Yeah, I don’t think so either. I just want to call the doctor’s office just to make sure.”
I call the doctor’s office and the lady who I spoke with, I had a sense that she was a black woman. She reminded me of an aunt. I explained to her, “I’m just getting results today.” I don’t think I have cancer so this is also leading the way I’m dealing with it. “I just need to pick up my results today and I’m just trying to make sure if I have a co-pay.” She’s like, “No, you shouldn’t. You know what? This is what I’ll do. I’ll send an interoffice request for your results and then they’ll send them down to me. So call me back in an hour because I’ll have them by then.”
In an hour, to the minute, I called and she probably was so busy between the first time I talked to her and now that she hadn’t even checked her emails. She’s like, “Let me look. They haven’t sent it yet. That’s weird. I don’t know why they haven’t sent it. Listen, I’m going to go up there and get it and I’m going to call you back.”
She calls back and says, “Hey, I was just thinking you should probably just come in.” As soon as she said that, that’s when I got scared because I felt, even though I hadn’t talked to her that many times, we had just built this rapport where she agreed that she’s going to give me the results and now she’s calling me back and telling me to just come in. The inflection in her voice, the energy, all of it, just made me say, “Okay.” I didn’t ask her why. I didn’t say, “What made you change your tone?” I just said okay and I got scared then.
I came home that evening and I told my wife. We were actually driving to the urologist for that appointment. “Babe, I called earlier. I talked to a lady.” I said I was trying to make sure we shouldn’t have to pay another co-pay. She’s like, “Well, no, we shouldn’t.” I said, “Yeah. The lady was supposed to just be getting me my results. But then she just told me I should just come in. I don’t know why. That just felt weird to me.” That’s what I told my wife and that was the first time I got scared.
She calls back and says, “Hey, I was just thinking you should probably just come in.” As soon as she said that, that’s when I got scared.
Before that, I was just moving through whatever I was being told to do because, in my mind, we’re going to rule it out. All of this is going to rule it out. We get to the urologist’s office. When I walked back up [to the front desk], as I was approaching the counter, the lady says, “Okay, your co-pay for today is…” I don’t remember what the amount was. My wife [went] right up to the counter and she’s like, “I don’t understand why we have to pay a co-pay. We’re just getting results, that’s all we’re doing. Maybe we have to see the urologist but it’s not really a visit. We’re just getting results. The service was rendered.” The lady goes, “Let me go check.”
The lady comes back to the desk with a piece of paper and slides [it] under the little window. I looked at the sheet. It was graphs and charts. I don’t know what it was. She said, “Oh, that’s your results.” At that time, I’m certainly thinking now she’s sliding me my results that it’s got to be negative.
My wife demanded that the urologist at least come and hand us the sheet of paper himself. The lady at the front desk walked away, came back, and she said, “Okay, the urologist said he’ll see you in a moment.”
We sit in the lobby for about 15 to 20 minutes. A nurse came and got us, took us to a waiting room, and we waited there for about 10 more minutes. Then he walked in. It was me, my wife, and my daughters were with us too. We were all together so we were all in the room. My daughters were younger. They were playing at our feet. They were in their own little world.
He came in, he’s talking, and I don’t know if it was so traumatic that my mind just deleted it because I completely never heard him say it. One reason I knew he must have said something bad was because my wife was crying.
I looked at her. “What did I miss? Can you repeat what you just said?” He said, “Yes, you have stage one prostate cancer.” My immediate reaction to him was, “Wow. You knew that I had prostate cancer and you were going to let me take that sheet of paper home and figure that out on my own?”
I knew right then that on this journey, that wouldn’t be my urologist. He was very embarrassed. He was trying to explain it away. “I see so many patients every day and right before I came in here with you, I was seeing another patient and he was crying on the floor.” It’s terrible.
It’s amazing to this day, it just is… wow. I didn’t pay that co-pay.
‘Wow. You knew that I had prostate cancer and you were going to let me take that sheet of paper home and figure that out on my own?’
Looking for a new doctor
I came home that night [and] called my primary care because she’s the one that referred me to him. I said, “Hey, this is not going to work. I have cancer.” She referred me to a new urologist.
I think I’m [savvier] in that space because I’ve been going to the doctor so I immediately know I’m not going to be able to work with this urologist. I’m also going to make sure I file a complaint with the Board of Urology. Certainly people in my community, they’re not going to know those types of things. Some people in my community would actually still stay with that doctor just because they feel like I don’t have any choice.
I left that urologist. He’s in the rearview mirror. Met with the new urologist. My wife came with me. He was in a little rolling chair. He rolled it right up in my face and he’s talking to me, looking at me right in the eye. He’s just talking to me. The energy was just so tense. He needed to leave the room to get some paperwork and as soon as he walked out, my wife and I looked at each other. “That’s him.”
Treatment
Radical prostatectomy
I was diagnosed in November and I had surgery in June. When I was initially diagnosed, I was told it was stage one by that first urologist. Then after surgery, I was told that it was stage two so it could be one of two things. It could be that I was misdiagnosed at first or it could be that it just progressed during that time. What I’ve learned about the disease since then [is that] it’s plausible that it could have actually just progressed during that six-month period.
My team of urologists had actually advised me [that] because [of] my health and all these different factors, they wanted me to do it within a year from diagnosis. I chose to do it in six months. I probably could have done it sooner but that was during the summer, I was off from work, and that was the reason I chose to do June.
I could have done it later. I’m glad I did it but my urologist told me, “You’ll be fine. We don’t suspect that it’ll escape the prostate in this time and metastasize.” That’s why it wasn’t a real urgency to do it December or January because I was told that as long as I do it within a year, I’m good.
Deciding when to do the surgery
I’ve heard of many men who also found out they had it and they just waited even longer. They just didn’t want to confront it.
Do I want to lose my prostate? No. But I know that I have this disease and I want to get it out as soon as possible. I could have done it sooner. I just chose to wait until June specifically because I know I was going to be off. I wouldn’t have to use vacation time.
If I worked all year and didn’t have that as an option, I would have gotten it done soon.
Make sure you have people there to support you because that does help.
I don’t know if sometimes when things are just so traumatic or stressful, my mind doesn’t allow me to be as rattled as I probably could be. It’s not like I was going in there happy. I had my family with me. I felt comfortable. My parents were there. My brothers came. Everybody who I love was there so that helped a lot.
Make sure you have people, who you care about, there to support you because that does help. When I opened my eyes and saw those people around me, that did help because I knew I had a long journey ahead. They told me that I woke up cracking jokes.
The day of surgery wasn’t really stressful. It felt like everything moved fast. I had to go the day before to do registration. I remember my wife and my youngest daughter were out of town on a Girl Scout trip and they were coming back that night. My mother-in-law actually took me.
I remember getting there that morning. My daughters were with me and we were laughing. One of my best friends came into town [with] his wife from Houston and they were cracking jokes. My dad came.
Right up until the time when they told me we’re going back to surgery, I remember just laughing with my family. I know I was nervous but I just have to stay in that space.
Even before surgery, I just knew it was going to be a success because I knew, without a shadow of a doubt, I was in good hands.
Preparing for surgery
They really did a fantastic job preparing me. Up until the day of surgery, I had learned so much through them.
[During] the period between diagnosis and surgery, I connected with Us TOO, which is an organization for prostate cancer survivors, and they have a chapter in Austin. I learned a lot through them as well.
I felt so comfortable and I think that goes into the comfort level with your doctor or your HCP because I just had no doubt. Even before surgery, I just knew it was going to be a success because I knew, without a shadow of a doubt, I was in good hands.
I feel that changes the trajectory of the healthcare experience when the patient has that real, authentic connection with any doctor that they have to deal with.
Knowing you’re in good hands
I’m an intuitive person. I got my college degree in communications. I’m all about how we engage and how we deal with one another.
From the minute I met that second urologist, it was so evident that he was on my side. It almost felt like I was his only patient if I could just explain it that way, honestly. I felt like he didn’t have any other patients to see after me. I didn’t feel like he saw anyone before me. I didn’t get that feeling of next, next, next. Never. He seemed like his calendar was just open, like he didn’t have [anything] pressing. He was just really locked in and listening to me.
All of that really helped. I feel that changes the trajectory of the healthcare experience when the patient has that real, authentic connection with any doctor that they have to deal with.
Certainly in my culture, there’s nervousness there. It just comes from so many years of mistrust so more doctors need to be intentional about how they engage all patients but certainly patients who look like me because we know we need to get over that hill of mistrust. I just think that Dr. Giesler — who is my urologist, who I love and I talk to him to this day — did that so well.
I know a patient who actually feels like they never had prostate cancer. They feel they were being used as a project. I’m sure they did [have prostate cancer], but they feel this way and it’s primarily because they don’t trust the doctor. Stop the mistrust.
We know that that’s a real thing, like Tuskegee. In a lot of men’s minds, they still feel that that holds true today. I’m not here to say whether it does or doesn’t; I don’t believe it does.
My point with this patient is I’m pretty sure that the reason he feels this way is because he has a severe mistrust of his urologist and the team. I often wonder if he did have a trusting relationship with them, would that change how he felt? Would he still feel that he didn’t have prostate cancer? I’ve never heard someone say that and because I know that he has that mistrust, I’m pretty sure that’s what makes him feel that way.
If you do have cancer or anything else, it’s always better to know earlier than not.
Recovering from surgery
After surgery, I had to wear the catheter for seven days. For me, the catheter was the worst part. It wasn’t fun. Everything else, I could deal with. The catheter was terrible.
On the seventh day, I had to get the catheter taken out. I’m pretty sure it has a lot to do with the fact that I’m healthy and I’m younger. But when the catheter was taken out, I was at my daughter’s softball event that same day. Now, that’s not to say that I was just ready to go sail the seven seas but I was able to attend that. I had a little donut pillow that my wife bought me and I was sitting on that. I was able to walk from the car.
The catheter was the worst. It’s just so bad. They gave me two different bags. One bag I would wear when I’m at home, overnight when I’m asleep. Then another bag, I could be more mobile. It was attached to my leg.
I don’t think there’s anything that helped. I was just ready to get the thing off. All of the rest of it, it’s fine. But the catheter was not my favorite part.
I was back at work I would say six weeks. Maybe seven.
Every patient story is different. I’ve talked to other black men, patients who were maybe three or four years older than me and maybe weigh a little bit more, [and] their outcomes were a little bit different. I go days without remembering that I had prostate cancer. Everything functions on me the way it did. I don’t have issues with incontinence. I’ve never had to wear a diaper. None of those things.
I’m telling you all the positives about my specific scenario just to motivate you to go get checked because if you do have cancer or anything else, it’s always better to know earlier than not. We just have to get away from assuming that we can just ignore it and that it’s just going to resolve itself because that’s not the case.
You can still have an amazing life (wink, wink) after a diagnosis or after surgery. I’ve been disease-free since June of 2019 and I’ve never felt better.
It’s key that we talk about it in families. As a prostate cancer patient or survivor, I make sure everyone in my family knows that I have prostate cancer.
Prostate cancer awareness
If family health history have been discussed, then I would have known about prostate cancer. As a man, because I was going to the doctor, I could have just added that into the conversation.
My doctor visits, when health history is brought up, just like I was aware of my aunt having breast cancer and my grandmother having breast cancer stage four and I share that with the doctor, I could’ve also shared the prostate cancer.
It’s key that we talk about it in families. As a prostate cancer patient or survivor, I make sure everyone in my family knows that I have prostate cancer.
As a black man, as a prostate cancer survivor, I’m just here to tell men everywhere — but certainly, men who look like me — that doctors are here to help us.
I have a twin brother and an older brother who have still not gone to the doctor. I speak out for them. My brothers know I had prostate cancer and they came to my surgery. They know now that our uncle had it. My twin knows that because we’re genetically the same, that makes him at an even higher risk but yet they still haven’t gone.
I had people ask me before, “Why do you think that? Why do you think it is that men don’t wanna go to the doctor?”
When I think about it, the only word I can think of is fear. It could be a fear of the unknown or just don’t want to be poked and prodded. I don’t want people asking me personal questions. I don’t want to have anyone in my intimate space like that. It’s all these factors. Meanwhile, there are questions lingering with your health that go undealt with because of the fact that this fear continues to keep you frozen.
As a black man, as a prostate cancer survivor, I’m just here to tell men everywhere — but certainly, men who look like me — that doctors are here to help us. They are. If you go to a doctor and you don’t like the way they make you feel, I want you to know that you have every right to find another doctor. You shouldn’t have to go to a doctor that doesn’t make you feel comfortable.
It’s okay to speak up when you’re in doctor’s visits if you feel that the doctor is not meeting your needs and meeting you where you are. You need to know that you can certainly speak up and make the doctor aware of that.
If the doctor is still not being intentional about meeting your needs, you have every right to seek out another doctor. That’s something I really want to make sure that I hammer home because a lot of people don’t realize that as the patient, we actually have the power. We have more power than we think we do.
Let’s not be afraid to advocate for ourselves in the healthcare space and to speak up and ask questions so that we can change the narrative.
I used to go to doctor’s visits with my grandmother and the doctor would say something and I’d ask my grandmother, “Are you okay with it?” “Yeah, it’s fine, it’s fine. The doctor said it then that’s what it is.” I’m like, “But are you okay with it?” There’s just this thinking that the doctor knows it all. I don’t know anything.
I’m here to tell you no. You’re there to educate the doctor on who you are. I always say you have to teach people how to treat you and the same applies when you’re with doctors. Let’s not be afraid to advocate for ourselves in the healthcare space, speak up, and ask questions so that we can change the narrative.
If you go to a doctor and you don’t like the way they make you feel, you have every right to find another doctor. You shouldn’t have to go to a doctor that doesn’t make you feel comfortable.
How to address the fear
Two things. First, more unconscious bias training so that doctors and healthcare providers have the tools and know how to engage the black patient.
On the patient side, this is something that needs to be talked about in church meetings, fraternity meetings, in places where black people feel most comfortable because that’s going to essentially be what’s going to get them there. They also need to be hearing it from actual patients, actual black men who who who went through this, who are survivors and can speak to what it might look like in terms of the journey and speaks to the point of early detection.
Once we can get them there, we need to be assured that doctors are going to know how to engage them. It’s not just to start. It’s to stay.
You have to be very calculated. [If they feel like it’s falling on deaf ears again], it might even be worse. “Oh, you got me here and now, see? This is why I don’t even go to the doctor.” Then you will never hardly be able to get them to go after that. This is a combined effort for sure.
This needs to be talked about in places where black people feel most comfortable because that’s going to essentially be what’s going to get them there.
Engaging black patients in a better way
Understanding how we communicate and that connection is critical. Perhaps walking into the room with a black patient and choosing to just talk about regular things. I am not cancer.
I’m only speaking for black people because I’m a black person. We want that because that’s going to be the best way to help us feel comfortable. There is this cloud looming over healthcare when it comes to how black people perceive any capacity of healthcare. The HCPs and people on that side must be vigilant and diligent about making sure to flip that in their daily interactions when they’re meeting with patients.
That’s not just going to happen overnight that’s why training is so important because some doctors need to be trained [on] how to do this. When it comes to tactical recommendations, how would that look? Maybe pamphlets that are provided to HCPs so that they understand, little tips and tricks, and ways to engage the black community.
Getting them there is half the battle but keeping them there is probably the bigger part. “I like those shoes!”“Wow! I like your hair.” A rule of thumb is to treat patients like they’re your parents or your family members even if clearly we’re not of the same culture. Most black people in that healthcare space, we’re tense. We’re uptight. We don’t know what to expect.
My situation is a little bit different because I’ve been going to doctors longer but I’m always wondering. Is it going to be a good experience? Is the doctor going to treat me like a person or like a patient? Yes, we’re going to be a patient but we want to be treated like people. I think that goes for all of us.
When the doctor feels that this needs to be stated, [if] there’s still a little bit of a disconnect, it’s even okay to say, “Listen I know you may have had bad experiences before but not here.” Declaring that [and] then following through in your actions. That can be enough, honestly.
A lot of doctors might take it personally because they feel, “That’s not me.” Most people realize it’s probably not you. It’s the system but this is how you could separate yourself from the system and say, “You’re here with me now. I’m going to take care of you. I don’t know what happened to you previously but you won’t have that here.”
While Tuskegee did happen, we must do our part in ensuring that it doesn’t happen again and the best way to do that is to show up.
Information on and access to clinical trials
I knew what clinical trials were but I didn’t know how [they] all worked. I wasn’t up to date on all the particulars. I knew in general but there needs to be so much more work done in terms of educating the black community on clinical trials and providing access because they don’t even know.
There are so many clinical trials. You can go to clinicaltrials.gov and they’ll show you. But so many people don’t know that. I only learned that rather recently. You can just log on to clinicaltrials.gov, look through the list, and see what’s upcoming, what’s done, [and] what’s still open presently.
Providing access [and] making people aware that that website exists because, like many other things, it makes the black community feel like we’re being purposely left out of these clinical trials.
Efficacy comes into play because we haven’t been included in these. We might be taking the drug and then it doesn’t react the right way because we don’t have any data to show that that would happen.
I want black men and men in general to know that they can be an advocate for themselves. You have a voice because at the end of the day, you are the patient.
Clinical trial, that’s a big buzzword right now. There is a push to try because so much more awareness is being shed on prostate cancer that we may be moving the needle forward in that area.
I would say certainly at the HCP level, in the doctor’s offices, and [in] advertisements… “Did you know that clinical trials are available?” Providing the website so that people can look through that on their own.
I just think so many people don’t know that clinical trials are available and that black people can participate in them. It’s important that we have a seat at that table so that we are able to do our part in the research phase of these different medicines to show how they can help our community.
As a prostate cancer patient, as a black person, I would just tell black people in the community that, yes, Tuskegee definitely did happen. We honor that. But it’s important to know what clinical trials are, to understand how beneficial they are, and to know that that’s not a likelihood now. We’ve done so much better in terms of education and awareness. While Tuskegee did happen, we must do our part in ensuring that it doesn’t happen again and the best way to do that is to show up.
Early detection is the way you can ensure that you have the best quality of life. If my cancer wasn’t found as early as it was, my reality wouldn’t be what it is now.
Being an educator in a different space
When I was diagnosed in 2018, I could have never imagined that I’d be doing this work professionally. I’m meeting with doctors, talking to doctors, and working to spread awareness on a national level and that’s just a feeling that I can’t explain.
I’m able to transfer my skills into this space, having been a teacher for so many years and still actually teaching in higher ed. It feels good to merge my passions with my skills, to do this work, and to be alive and well enough to do it.
At the end of the day, the best thing you can do for yourself is to go to the doctor.
Words of advice
I wasn’t able to go in and advocate for prostate cancer necessarily. I did go to the doctor annually. Had I known about prostate cancer, I am sure that I would have.
At the end of the day, the best thing you can do for yourself is to go to the doctor. You have reasons to be around, whatever they are, whether it’s family or kids, or job. You have a reason to live and you have a reason to live your best life.
Early detection is the way you can ensure that you have the best quality of life. I know that if my cancer wasn’t found as early as it was, my reality wouldn’t be what it is now. I go many days without even realizing that I have prostate cancer and I think that’s just a testament to early detection, certainly because the cancer was able to be contained.
Early detection starts with going to the doctor. You’ve got to go to the doctor. You’ve got to move past those feelings of not being comfortable at doctor’s offices.
No one knows you better than you do so your best bet is to go to the doctor and speak up. If you feel something’s going on, then make sure you tell the doctor about it. But even if you don’t, I would advise all men. Nothing wrong with going in and requesting a PSA test.
Self-advocacy
For me, [the doctor] is going to have to be somebody that gets to know me in an intimate way. I want to feel comfortable with him. That goes along with why I speak out too. I want black men, and men in general, to know that they can be an advocate for themselves, that it’s okay. You can say, “No, I don’t agree with this.” You have a voice because, at the end of the day, you are the patient. That’s pretty much the story with the way I was diagnosed.
Black men are twice as likely to be diagnosed and 2.5 times likely to die. The disease presents itself in more aggressive ways and it remains silent in its earlier stages.
Importance of early screening
I was 37 [when I got diagnosed]. The truth is most doctors aren’t going to be screening for this until you’re 40. I tell men that are about my age that I run into. You can tell the doctor that you would like to have this blood test.
In all cases, if there’s a family history, you should certainly be getting screened. That’s why it’s so important to talk about things because if you don’t, then you’re not going to even know the history to be able to advocate.
Black men are twice as likely to be diagnosed and 2.5 times likely to die from the disease so just being a black man makes it much more important that you get this checked. In black men, the disease presents itself in more aggressive ways and it remains silent in its earlier stages.
For all those reasons, you need to go to the doctor. If you’re not 40, I would say still go to the doctor.
Another real barrier is this macho thing about the whole DRE, the digital rectal exam. First of all, if you have to get that done, you just need to do it. It’s for your life. With advances in technology, that’s not the first option now. The first option is the blood test and obviously, if the blood test reveals something, then that will be probably the next step. I try to make sure men know that because it seems minor, it seems trivial, but I promise you that a lot of men won’t go to the doctor for that reason. I’ve heard that so many times.
God wants you to depend on Him but he wants you to depend on people he’s placed here to do the job as well. The best thing I can tell you is quite simple. Go to the doctor.
While I’m talking about prostate cancer specifically, the overarching message is you need to be going to the doctor because you can’t get screened unless you go to the doctor. You need to be going to the doctor to get a baseline in terms of your health in general.
As a man, you definitely should be getting your PSA checked. If the doctor doesn’t do it, you should be requesting it. Even if you’re not 40. You could be 30. I would still say get your PSA checked because at least you have a baseline. You can do surveillance. It helps you to be more mindful and to be more vigilant about your health.
I still had a part to play in it because I went to the doctor. It was a blessing that it was this particular doctor but still, the fact that I went, I was able to be discovered.
You’ve got to get there. You have to get to the doctor.
Always look for support. If you don’t have any family support in terms of prostate cancer, there [are] support groups [and] mentors that can be provided to you. In terms of health care in general, you can jump on Google, you can research support groups that might be specific to something you’re dealing with. My reality is prostate cancer but I want to really reiterate that health care is of the utmost importance.
If you’re going to get your general health up, make sure that you’re aware of the latest as it relates to your general health. If that includes realizing that they need to do surveillance with regard to prostate cancer or breast cancer, do what the doctors tell you to do. Please don’t ignore what they’re telling you.
If you’ve got the diagnosis, don’t ignore it. We’ve got to get away from that.
I grew up in a Christian household. I love God. I know God. But I also know that God put doctors here to help us. God wants you to depend on Him but he wants you to depend on people he’s placed here to do the job as well. The best thing I can tell you is quite simple. Go to the doctor.
No one knows you better than you do so your best bet is to go into the doctor and speak up. If you feel something’s going on, then make sure you tell the doctor about it.
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.
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 ...
Having rampant cancer in his family and the African-American community, Theo lends a voice to advocate awareness, early diagnosis, and open conversations.
Explore his story below to hear all about his experience and very timely message. Thank you for sharing your story, Theo!
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Life outside Cancer
I’ve always adopted the mantra: You get to live a day at a time, and you get to choose how you live it. That’s really all we get.
I’m happily married to my wife of 42 years, Beth. We have three daughters. Leanne is the oldest. Randy is a middle child. She’ll tell you the dreaded middle child. Lauren is the youngest. We now have seven grandchildren.
I run a business in Akron, Ohio. My business is to manage money for people that are about to retire or are retired, make sure they have enough for the rest of their lives, and leave a legacy to some institution or some people.
Learning about prostate cancer
I have no symptoms of anything whatsoever. My doctor is also a dear friend of mine and who also happens to suffer from prostate cancer.
During my routine annual exam, he said, “Theo, your PSA is elevated. I’m going to refer you to a urologist.”
I went to the urologist. He got the results of a blood test. He asked me a few questions and said, “Let’s do another blood test in about three or four days.” We did another one, and my PSA rose again from 12 to 14 very quickly. So they did the biopsy.
I remember where I was and what I was doing when I got the phone call on a Saturday morning from my doctor at the Cleveland Clinic. Incidentally, my wife had been diagnosed with melanoma the day before.
We’re in the car, and I get the phone call. He says, “Theo, it’s prostate cancer. Let’s set up a time to talk. I want you to interview me, the surgeon, talk to a radiologist, and determine a plan of action.”
I think it was the following week that we went to the Cleveland Clinic. That began the process of my prostate cancer journey.
Getting diagnosed
It was 2003 when I had the first biopsy. That biopsy was inconclusive. It said I did not have prostate cancer.
But it was not the Cleveland Clinic then. It was a local hospital and doctor here in the Akron area, a local nephrologist. Knowing what I know now, there should have been some type of phone call. I left that doctor’s office, and there was no follow-up appointment of any kind.
Normally, I guess there should be a three-month or six-month routine biopsy scheduled. I missed a couple of years of getting my annual exam from my primary care physician. So when I went to the primary care physician, he said, “Your PSA is up in the 60, 70s range. You need to see a urologist.”
My doctor, my primary care physician, being a person that had prostate cancer himself and was able to keep his numbers low, possibly should have been more alarmed about it and said, “Get back there every six months.”
I was instructed by no one, and at that point, I didn’t know enough about the disease on my own to say get back in there every six months.
I was diagnosed in 2009 at 52. High end of intermediate risk and the low end of high risk. No staging. That’s with aggressiveness, and that’s pretty aggressive, especially at 52.
Family history of prostate cancer
No. My dad did not. His dad did not. My brother did not, and he’s an older brother. This came out of left field on us here.
Receiving the bad news
He looked at me and said, “Don’t panic.” He literally said, “Mine has been up close to 1,000.”
He took a new prime shot and took them the rest of his life, and his PSA remained low. He did not die from prostate cancer. He lived into his early 90s.
I thought about two things. He’d always told me in my early 30s that I had an enlarged prostate. In my mind, I said, “Maybe that could be part of the PSA issue. No one is being really urgent about it, getting back in there after 2003.”
I was hoping, so I said, “Maybe it’s just a high PSA because of that.” Of course, I was very nervous that it could be prostate cancer.
Be grateful that times have changed since my biopsy then. Currently, they give you a shot literally in the prostate that numbs it, and so it’s not painful. That was not the case with my biopsy. There was nothing.
I think they do three to four snippets per quarter. It’s in quadrants. By the time you hear the clip, it’s too late. It’s a very painful, uncomfortable but short procedure and process, which has changed now.
Getting the results
We got the call. The surprising thing is neither one of us broke into tears right away.
We ran a stoplight, actually, when I received the information. We looked at each other. I think one of us said, “What are the chances of both of us having cancer at the same time?” That’s how our relationship is. She tells me even to this day, “If cancer doesn’t kill you, I might.” That’s the kind of relationship we have.
We finished our errands. Of course, we kept the conversation going and talked about what the next steps may be and that we had to call the girls. They were naturally pretty devastated. The ones that were close to home came over as quickly as they could.
We just started plotting out when and what. They were all for surgery. My whole family was. I quite frankly was not interested in surgery at all [and] wanted to do the radiation instead because it was less invasive.
At the end of the day, I never really had peace about it. I opted for the surgery.
Breaking the bad news to the family
It’s difficult as the process was literally to put everybody on speakerphone and called everyone.
We did joint calls with all of our close friends, our pastors, our family, and our parents. That really took a few days because at that point, there’s some crying on your own you’re doing. You’re physically exhausted, and you’re saying, “We’ve talked to eight people today, and let’s just pick this up tomorrow.”
Just make sure you talk directly to your closest friends, whether it’s phone or face to face. You do not want them to find out secondhand at all. They show up, and they go way beyond the call of duty to make sure you’re okay.
What support was most helpful?
You have to make the assumption that people want to help. I’m more of the person that is the helper and less likely to call and say, “Help.”
We would meet a group of guys at Einstein’s for breakfast. Leanne can tell you about this. She says, “I don’t believe you have 10 to 12 guys that meet every morning and just talk. No, guys don’t do that.”
Because I was at home with a catheter, I couldn’t get out. One friend says, “Is there anything I can do for you?” I said, “Yes. Go to Einstein’s, get me a cup of coffee and a bagel, bring them to my house, and sit with me and have breakfast.” That did as much for him as it did for me.
People just want to help. That story is an example of you needing your friends and your friends needing you. The opposite end, for kids, it could be scary.
Antonio, Leanne’s son, was five. He walked into the library and saw me in my bathroom, sitting there. I think Leanne had to tell him, “It’s okay to go over there and sit in his lap. He’s fine. He has cancer. Number one, he’s not going to get on you. Number two, he’s not fragile at this point. It’s perfectly okay to go sit in his lap.”
He was very cautious. With kids, when you see them, you need to tell them, “I’m okay. Come over here and give me a hug.”
Why was that an emotional moment for you?
I’ll tell you exactly why. “I want you to look at this chart.” He literally put his head down and wouldn’t look at me.
I took the chart, and I said, “Is this me right here?” He says, “Yes.” I said, “I’m at the high end of intermediate risk and the low end of high risk.” I said, “This is saying the average life expectancy is 11 years?” He says, “Yes.” I said, “Explain that to me.” He says, “Well, eight years will be great, two years you’ll be on hormones, and last year you’ll be miserable.”
The very first thing I thought was, “Antonio is five. Where will I be when he’s 16?” I did the calculations, and I said, “I’ll live long enough to see him turn 16 and get his driver’s license. If I make it that far, I’ll be fine.”
That was my first thought. Will he be driving? Will I get to see him drive? Will I get to see him become a 16-year-old?
Of course, we’re beyond that now, but that was my first thought when I calculated those numbers.
First of all, if they’re really close to you, you’re more forgiving.
Most times, people don’t need to say anything. Just an, ‘I’m sorry. I feel bad. I’m here for you. If there’s anything I can do, let me know. This is terrible. This is devastating. I don’t know what to say. I don’t know what to do. I feel horrible.’ Leave it at that, for the most part.
Treatment Decisions and Surgery
I have a very good friend in Chicago who incidentally was also going through prostate cancer. This gentleman was retired. I called him up.
He was at his vacation home. He said, “All the treatments are pretty much the same success level. If I were you, I would strongly consider radiation, because by the time you add up all the side effects, that one in your situation with your PSA number, that’s what you should do.”
Monday morning at eight o’clock, my cell phone rings. “Hi. I’m Dr…. head of urology at the Cleveland Clinic.”
I said, “Well, doctor, he told me that you said radiation makes the most sense.” He goes, “No. I don’t think so. I think here at the clinic, you need to do surgery because if you do surgery and you have a relapse or recurrence, then we can do radiation.” He said, “We do a nerve-sparing surgery so you don’t have issues going down the road.”
Once I heard that, I said, ‘I don’t know where this is going, but I’d rather have more than one shot at it if this is not going to go well.’ That’s what I did. I did the surgery.
Fears with surgery
You’re always concerned about your sex life going forward. But a nerve-sparing surgery makes it more possible for a man to maintain an erection, to have sex. That’s a big concern for a lot of guys.
I did have one of my buddies tell me, “Hey, at the end of the day, your wife may prefer just a lot of cuddling, and you will be alive.” That was great advice.
Cleveland Clinic made sure to tell me that. It was also one of the discussions that I had with the second opinion doctor. He kind of felt like if you went with the radiation, then you would have less issues later, and it would not affect your sex life now. That was his reason for it.
He says, “If we’re going to come up with the same success rate, then why impact your life in that way now?”
Then again, as I said before, for me, it was more important to do the surgery, and then the added bonus was when he said they could do the nerve-sparing. I said, well, okay, then that’s it. That makes it less of an issue.
Describe the surgery
My doctor said, “This is going to be a pretty routine surgery. We will be using robotics. That will help with less bleeding and a much quicker recovery.”
I am told that my father accosted him when he came out because the surgery ended up being about six or seven hours. It was substantially longer than it should have been, and my father just was not too happy about that.
He told me the recovery would be three to four days and I’d be out of there. He said, “You’ll have a catheter for several weeks. Come back, and we’ll take that out.”
He said, “You should be off and running, for the most part. You can start back to work in a month and a half or so.” He felt that the surgery would be pretty routine, with very few complications. That ended up not being totally true.
But you never know until you get in there. So I’m glad he did. Things took a little longer, the surgery and the recovery. Getting out of the hospital took longer than normal.
How long was the surgery?
Three to four hours.
He always talked about the nerve-sparing, and one of my seminal vesicles actually had cancer, so he had to remove that, and then the margins. When you do the surgery, you remove lymph nodes and they usually do a few, but they ended up doing 10 or 11 removals of those. That’s what took the time.
The recovery was supposed to be four to five days, but I stayed for eight days in the hospital.
How you were able to get through?
My issue was my creatinine levels were higher than they needed to be, and so they were worried about kidney function. It took a while to get those belts under control.
My advice is, if you’re in a hospital, you need to have your family guard how often people come and go.
They really have to look out for you in terms of your rest and be able to delicately say, “He’s glad you came to see him, but he really needs to sleep right now, because I’m sure you know you do not get any rest at the hospital.”
Every three to four hours, someone’s coming to do something to you, and so therefore the only time you get a rest is when you get out of the hospital.
They’re going in at all hours of the day and night, checking your blood pressure, checking all the different stuff you’re hooked up to.
Post-surgery care
One of my main issues is I could not pass gas. When I finally did, no one was in the room but me. I got my phone, and I text to my wife, “It’s a girl.”
She said she read it out loud and everybody knew what it meant, and everybody out there just erupted, and they want you to go. I tried prune juice, everything, and nothing worked. They said you cannot leave, and so that was the last thing I had to do before I left. After that, I went home.
Taking it lightly helps. You just have to.
I did have another kind of strange experience. There was one person that I have a temporary rift with. But sometimes when you’re sick, they feel a need to come around and try to fix it all before.
She told me that someone wanted to come, and my blood pressure went up. She had to kindly tell them no, and that’s difficult. But I will say people will come to see you for the right reasons, and people will come to see you for the wrong reasons.
I think I ended up going two weeks longer than I should have, but I thought the catheter was great. You don’t have to get up to go to the bathroom, because you’re sore after surgery.
Every time I tried to lift myself off of a chair, it’s just painful. So with that, I didn’t have to get out of bed and go to the bathroom at night. I was reluctant to let it go, but I had to.
When I found out it didn’t come out the day it was supposed to, it quickly became irritating because I was mobile. I was in less pain, and now it became an inconvenience because I can’t go running around outside, although I did around the house. I was living in the country at the time.
The last week or so was really, really hard. “Just get this thing out.” Initially, it was very convenient.
I was supposed to have it for two weeks. I think I had it double that. If it was supposed to be a week, it was two. But I’m pretty sure it was close to a month that I had that catheter.
Ihave to just be careful of infection, just have to keep it clean. Other than that,I didn’t have any issues with it whatsoever.
Radiation therapy
First of all, I made a very dear friend in this process. I was going to my first radiation treatment, and I got out of my car in the parking deck. I’m about 6’7, and Black obviously, and there was this 5’7 White guy who got out of his car. We both went through the door out the deck.
We went to the building for cancer treatment. We got on the elevator. He said, “Are you following me?” I said, “It depends on where you’re going.”
He said, “I’m going to start my radiation treatment for cancer. You’re the last person I want because you should not be following me.” I said, “I actually am following you because that’s where I’m going, too.”
We’re dear friends up to this day. I had a buddy who got treatment sometimes around the same time.
It was treatments every day, Monday through Friday, for seven weeks.
At that point in time, my youngest daughter worked downtown near the clinic. She would just show up unannounced. I never knew what day she was coming, what day she wasn’t coming.
She wouldn’t tell me. She would show up, and I would be in there for probably 20 to 30 minutes. It wasn’t long. Out and back in the car, and back home or back to work.
It was an inconvenience from a travel standpoint, but there was a certain amount of comfort.
The hospital is about a half hour from my house. It was a highway drive mostly. It was a good time.
Until this day, I get comfort when I drive under the main campus of the Cleveland Clinic. Seven weeks out, you know you’re done, you ring the bell, and you just hope your PSA doesn’t climb.
Describe the process of radiation
For prostate cancer, you just get on the table. They put a tarp over you. You pull your pants down to your knees. You’re on this flatbed, and the radiation machine just goes around.
It actually tilts and goes around and hits specific areas that they’ve targeted and certain margins outside of where they think the prostate cancer may have spread to.
You see the same three or four nurses, so you develop relationships with them.
That’s really the process. You’re done, and you leave and go back to your life.
I would have some burning during urination. Women have urinary tract infections, so they may be used to that.
That was my first experience. It gets to the point where you tell yourself you don’t want to drink water because you don’t want to have to go to the bathroom, but you have to.
You let them know, and then they give you things like pills you can take to help with that. They did work. It was very surprising when I first started, and I was very glad to take those pills after I got to.
The doctor did tell me that could happen. I was actually surprised that it took as long as it did and thought maybe it wouldn’t, but it did.
Outside of that, no burns, no rashes, no irritations of any type.
The issue with me was when they checked my PSA after the surgery, and it started to rise again. That’s evidence that I have a recurrence. We don’t know how far.
They looked at the surgery and said, “Let’s do an additional margin of X.” They feel they can go so far before they start affecting the lymph nodes. Once they affect the lymph nodes, then you have a whole different set of side effects.
The radiation itself was targeting a specific area with the idea of not having issues with your lymph nodes down the road.
Signs of recurrence
I think when it got up to about two was when they said, “Okay. Hey. We need to start doing something,” Because, at one point, it was almost undetectable right after the surgery. Then within two weeks, it started declining.
Addressing the recurrence
It was, “Hey. Let’s start every three months and see where this goes.”
Unfortunately, it went from two to four and from four to six, and then they said, ‘You’re going to be dealing with this the rest of your life. You need to talk to a medical oncologist.’
I went to his office, my wife and I. He reared his chair back and put up his cowboy boots on the desk, and he says, “Do you know why you’re here?” I said, “Yes. I have prostate cancer, and my PSA is still climbing.”
He goes, “Do you understand that from now on, we’re monitoring this and that you are going to be dealing with this the rest of your life?” I reluctantly said, “I do.”
He started out, and he just wanted me to know the gravity of it. “We’re just going to be maintaining this for the rest of your life.” That’s when it really hit me.
When the doctor said, ‘You’ve got eight good years, two years of hormone treatments. Your last year is miserable.’ That’s when it hit me. I said, ‘This really could be me.’
Managing a chronic disease
That’s the case; it was a chronic disease. He told me what we would need to introduce, when, and what things they would use, and then went on through [to] talk to them about clinical trials.
He said, “For now, we’ll monitor it.” Then that’s what starts the CT scans, the bone scan once a year, and I’d heard about kidney cancer also. I was getting the chest X-rays, and then all ended up fine. So I’ve got to stop the checks.
2nd Cancer
Getting diagnosed with kidney cancer
I was diagnosed with kidney cancer five years after the radiation. They removed it, and of course, the concern is if it returns, it could spread to the lungs. So I have to do the scans, basically chest X-rays, because I was already getting a CT scan.
That kind of doubled for both the kidney issue and the prostate issue. I had to get the X-rays, and five years and that was done. That was totally successful, and I had a recurrence there. I’ve had some cysts on my kidneys that I didn’t know I had until then, and so they’ve watched them. That’s how they discovered it.
It was at a very early stage.
In fact, I had a colonoscopy and was out to dinner, getting ready to go to a Todd Rundgren concert. My side started hurting me, so off to emergency I went. Didn’t go to the concert.
They said, “You have cysts on your kidneys. That’s not why you have pain, though. You have pain from the gas that is stuck in your body from your colonoscopy. But you have cysts in your kidneys and probably want to get those watched.”
That’s when I started getting them washed, and not too long after that, they figured that it’s all the colon cancer and not the kidney cancer.
I had a PSA check every three months, every half a year, every six months a CT scan, and then every 12 to 18 months a bone scan. That’s just because they’re watching to make sure it doesn’t spread to the bones.
So far, it’s been all good.
PSA levels so far
It’s crazy. They continue to climb until 2019. It got to 52. Since 2019 it has gone up and down, which is really strange.
It sits at 57 now, so I called my doctor, because I was supposed to have a bone scan in December, and said, “I don’t see a bone scan on my chart. Shouldn’t I be having the bone scan about now?” He said, “Well, think about it. In 2019, your PSA was 52, and now it’s 57. Percentage-wise, there has been very little movement. I don’t see any reason to do one right now.”
There’s a couple of philosophies, and his philosophy is if hormone treatments after metastasis do not prolong your life any more than taking hormone treatments before metastasis, why subject yourself to the side effects?
That’s what we’ve done. I have not started hormone treatments at all, and they have not found any metastasis at all.
I did mention my dear friend, who I’ve met, the little 5’7 guy, and he’s a worrywart. He started his hormone treatments when he hit 10, and so it’s different for different people. I talked to him often, and he tells me, “Theo, I’d be a nervous wreck.”
I said, “I know you with time, and I’m glad you’re taking hormone treatments. It’s different, and the doctors are different. I have a different oncologist now than I did then — Dr. Timothy Gilligan. He’s a white gentleman, but he specializes in prostate cancer for African Americans.”
I really feel like I’ve got an individualized treatment plan that is geared towards the quality of life, according to the risks that the patient wants to take. You just have to say, ‘Hey, I don’t feel like taking any additional risks by not starting these hormonal treatments.’ I just don’t. I haven’t.
I think Lan said there’s a Dr. Pan. I can’t really recall the guy’s name, but he knows a doctor that’s out there at the City of Hope, and the previous doctor ended up taking a job somewhere else. Then I just got on the Cleveland Clinic website and fell upon his name and then called him and said, “Hey, I need you to come to be my doctor.”
Homeopathy and naturopathy
What supplements do you take?
I have a bunch of supplements that I take, but the real key is a machine called a HOCATT. It’s designed to get in there for about a half hour.
They shoot oxygen and carbonics into your nose, which drains you, but more importantly, they raise the temperature. It gets very hot, and the idea is it stimulates your white blood cells because it says my body has a fever. I need to run and attack anything that is suspect, and I get that.
I go every Friday at 2:30 or 3, what’s called my spa treatment at the end of every week.
They told me it will raise my PSA temporarily, so I don’t want to get my PSA check when I get out of this thing. Overall, it should slow down the process and give my body the best fighting chance that it has.
I also take vitamin D and fish oil.
Deciding on integrative treatment
I just did it and then told them, and fortunately, Cleveland Clinic is adopting some of that on their own at this point. He’s perfectly fine. There’s no, “Hey, you know what’s in these supplements? Do you know what you’re taking? Is this going to counteract what we’re trying to do here?”
No resistance, judgment, or anything of any kind from him at all. It’s been great.
When to start hormone therapy
For him, it’s just whenever the bone scan shows metastasis. It’s cut and dry with him. I did ask him a question. I didn’t want to ask him, “Doc, at what point in time are you pretty sure you’re going to find something?” But he said at 50.
The next time I see him after, I asked him. I’ve been over 50 for a while, especially if my next bone scan is clean. I said, “What does that say?” I don’t know what that says, but he says, “Most people were going to find something when they start getting a PSA of 50.” I’ve had scans since it’s been 50 in 2019.
Managing “scanxiety”
I don’t do very well with that one because of my charts. If I get my PSA checked today, I know I’m probably going to get an answer within 24 hours.
If I get up to go to the bathroom at 3:00 a.m., I’m checking my phone, and there’s a certain amount of anxiety. Once you do the password, I get an email that says ‘test results.’ That’s also stressful.
I had a very dear friend who died from prostate cancer. It was caught in the latest of late stages and did a lot of experimental stuff.
He told me the best advice I’ve had. He said, “You have to thoroughly enjoy the highs.” You’ll have the highs and you’ll have the lows. But you got to celebrate every high you’d get.
Whenever my PSA stays the same or goes down, I keep a chart. I look at that graph, and I look at how fast it goes. If it doubles in three months, you’re in trouble. I’m always looking at what rate is it doubling? Is it nine months? Is it 10 months? Is it a year? That affects me emotionally.
You don’t really want the information, but you do. It’s a mixed bag there. I don’t do a good job of handling that part of the anxiety.
You keep your plans and your dreams until you can. From a caregiver’s standpoint, being the guy messes with my wife’s security.
We do talk about that. Her statement now is, “You may end up living longer than me.” That could be true.
I don’t know. We don’t know. You have to have people, whether it’s a spouse or a good friend or both, that you really can talk about everything you’re feeling.
We’re both type A personalities to the point that if I get up in the middle of the night to go to the bathroom, I’ll come back and my pillow will be on the floor, and she’ll say “Go make some money.”
I’m like, “It’s 4:00 a.m. I can’t. Let me sleep for another hour or two.”
Humor has a lot to do with everything in terms of hightailing. Find somebody safe with whom you can express how you really feel and will let you express that.
I don’t get a lot of sympathy, and I don’t want a lot of sympathy. I don’t feel like I need it. There may be a time that I do.
Life is normal, because as long as you are able to, you still get to choose what you’re going to do and what your outlook on life is going to be in the end.
Some friends and I have a saying, “Your tombstone should have three dates on it, not two dates: the date you were born, the date you stopped living, and the date you died.” Hopefully, the last two will be the same day.
My wife has been the best thing for me. Because if I wanted to have a pity party, which I typically don’t, I couldn’t have one anyway.
Having children as support
Leanne and I are a lot alike, and we do things without really talking about it a lot.
She didn’t really tell me she was going to start doing the research. I found that out almost secondhand. That was the inspiration for it.
I remember when she was in prep school in high school and brought home straight A’s the first semesters as a freshman, and I asked her, “Do you feel any pressure to get straight A’s?” She said, “No. This is okay.” “Good. That’s all I want to know.” I’m floored.
She’s never been afraid of things. She likes the limelight. I’m just impressed by her all the time. I’m just, “Damn. She’s an impressive woman.” That’s why I’m proud of her, that she is on a mission.
Advocating in the community
We do now, but nobody talks about it until you get it. Then all of a sudden, out of the woodwork comes, “Well, I had prostate cancer three years ago.” “Well, I had prostate cancer four years ago.”
You’re walking around with all these guys, 3 out of 10, 80% African American, which have had it, and nobody knows anybody else has had it. Now there are support groups, that type of thing.
Not having it in my family, I was not that exposed to it.
Then having a doctor that had prostate cancer that was doing okay and died in his ’90s and not from prostate cancer. There just wasn’t as big of a fear of it, but then once I got it and you start looking around, you’re like, “Whoa, wait a minute, this is everywhere.”
At the Cleveland Clinic, they told me they had a kid in his late 20s, a Black kid that had prostate cancer. Do you start checking in your 20s? They say no. I learned about the process after I was already in it and the numbers after I was already in it.
Conversations in the Black community
Men generally, but especially men of color, don’t go to the doctor. A lot of them don’t. Some of it is because they don’t have insurance. Some of them are macho. Some of them fear the doctor. They don’t want a rectal exam.
I think getting out there, like getting your blood drawn. If you can do that, and you could start doing that when you’re 40, it’s going to save your life. I think the education process.
You’ve got to look at the hand of the government with the Tuskegee issues, saying, “I don’t know if I can trust.” Which, by the way, is a whole other story with COVID, because I’m finding more middle- and upper-class white men not wanting to take it, which is strange to me.
A lot of my Black friends have gotten the shots. I’ve had my first shot. That’s a whole ‘nother story.
Just the lack of trust for doctors, the absence of African-American doctors.
Again, I’m 63 now, and so I’m talking for my age group. It may be different for people 20 years younger than me, but those are some of the reasons.
My mom to this day calls me when my dad goes to the doctor and asks me to go, because he does not want her in the room while he’s in there with a doctor.
The last two times, I told her, “Yes, that’s the macho thing.” It’s the “keep her in the dark” thing so if I get bad news, she doesn’t have to think about it.
I just convinced her, “You just barge in there and hear what the doctor has to say.” That’s what she’s doing now. She’s 91, and he’s 88. There’s just this fear of doctors.
What needs to change?
I asked Leanne about that at one point in time. Can’t some medical association or some medical say, “Hey, all the doctors in Summit County, and such, every African-American that comes in here, tell them that we have to do a blood test. We have to draw blood as part of your health. Not just for PSA.”
I don’t know if that’s an oversimplification, but it should be almost demanded that doctors do that for people that are at risk. Because that is the first step. It’s the least costly; it’s the least invasive. It’s the least threatening thing you could do that gives you the information you need to take care of yourself.
Prostate cancer is one of those cancers that are very treatable if you can catch it. My prostate and kidney cancer was that example. They caught it quickly, did it, and I’m done with it.
Cultural differences and doctor training
I think it’s a great conversation. The way that conversation in a perfect world should have gone is, “Theo, your PSA is at 14. That’s high. You are a candidate for getting prostate cancer. However, the success rate if we find it early is you basically get to live your life as if you never had it. As scary as this sounds, Theo, I need you to come back every three months. Do this so we can catch it and do something about it, and then you can have a normal life.”
I would have been scared to death walking around feeling I’m a walking prostate cancer. That’s a whole different psychology, but coming out on the other end of that with less risk at the end of life. That’s a difficult discussion that the doctor should have with the patient.
Opening the conversation of risks to kids and grand kids
I have not, but I will. I’m 62; 20 years puts me at 82 if I live that long. 17 put him at 37. I’ve done the math.
We’ll have the discussion before he’s a candidate for getting diagnosed with prostate cancer. Whether that’s him and I talking over an ice cream cone, or me telling him goodbye in his life. I feel there’s time, but having had this discussion with you, I’ll approach the subject with him now. Why not?
The critical part is you’re at a higher risk than most because I’ve had it. It is 100% curable if they catch it on time. Just stay in front of it. Promise me at 35-36, if not sooner, that you’ll get an annual exam. That if you do not hear from your doctor about a blood test by a certain age, you’ll ask for it.
Normalizing the conversation
We’re all interested in living as long as we can. Part of that is taking steps to assure that. One of the easiest things you could do is just go get an annual physical exam.
When you get one, ask for a blood test to find out what your PSA is. I don’t care what number they give you. You want to know that number today, more than you want to know that number tomorrow.
Diversity in clinical trials
I think I would try, and my doctor, Dr. Timothy Gilligan, that’s another thing. He is well on top of clinical trials and will suggest one at the appropriate time.
I am all for anything that could prolong and improve the quality of life.
With prostate cancer, chemotherapy does not. Chemotherapy with a lot of cancers is curative. I don’t feel that I would opt for that if they said, “We can give you three more months.” I’d rather have the quality of life.
Now, if I can go into his office and he tells me, “You have to start chemotherapy,” all bets may be off. I may be retracting everything [I’m] saying right now because, at the end of it, everybody wants to live as long as they can.
I’ve seen a few people elect not to get chemotherapy. I looked at them, and I said, “They went out the way they wanted to go out; they looked the way they wanted to look.”
I’m also concerned about what view will your grandchildren have of you before you die? What will you look like? I know that could be vain, but I am concerned about it because those imprints stay on your life for the rest of your life.
I think we should go online and look for doctors that talk about doing clinical trials and specialize in dealing with African-American prostate cancer. They’re out there. I had four that I was looking at, and that’s why I chose him.
All of us get a day at a time. Relationships are the most important thing in this world, period, and that’s it.
Famous Weather Anchor Shares Prostate Cancer Story, Gleason Score 7, and Passionate Plea: “Please Get Screened!”
Al Roker is a celebrated TV journalist, personality, Weather & Feature Anchor for TODAY and the co-host of 3rd Hour of TODAY, and now a prostate cancer thriver and patient advocate.
Diagnosed at 66 years old with an aggressive form of prostate cancer, Al was able to catch it early through a routine PSA test at his annual physical. After surgery, the husband and father has no evidence of disease, and has used his celebrity to send a clear message to other men to screen for prostate cancer with the PSA test and digital exam.
This message is especially important for African-American men to hear, as they are disproportionately impacted by prostate cancer. Thank you, Al, for sharing your incredibly powerful voice to uplift others.
Name: Al Roker
Diagnosis (DX)
Prostate cancer
Gleason score: 7+
Aggressive
September 2020
Age at DX: 66 years old
1st Symptoms: None, detected by routine PSA test and digital exam
Treatment
Prostatectomy: surgery to remove prostate, surrounding tissue & lymph nodes
This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
First Tests & Scans
How did you know to test for your PSA?
You just knew about it. It was one of a battery of tests that your doctor always took along with the digital exam which everybody knows Moon River kind of thing *sings song*.
I knew about the PSA. It was just like your cholesterol and your blood pressure, and it was just one more metric that you measured your health by.
What was your Gleason score
I had a 7+ Gleason score. That wasn’t terrific obviously, but again it also speaks to having access to good healthcare. They could have easily said, “Well, let’s just watch this,” but it was like, “No. Let’s do an MRI.”
TODAY — Pictured: Al Roker on Monday, June 10, 2019 — (Photo by: Nathan Congleton/NBCU Photo Bank/NBCUniversal via Getty Images via Getty Images)
What were the scans and biopsies you underwent for diagnosis
Did the MRI. Didn’t show any target areas. It was like, “Let’s [still] do a biopsy.” That’s when we found the cancer.
It wasn’t really until I did the genetic testing on it at Sloan Kettering that it was like, “Oh, this is pretty aggressive.” There was a lot more than the biopsy showed.
How were the MRI and the biopsy
Look, it’s not a walk in the park per se. The MRI is a little easier. If you’ve ever been in one of those MRI machines, you’re lying there, you’re still. It’s, I don’t know, about 45 minutes, almost an hour of constant noise.
To be perfectly honest, it wasn’t so bad for me. I think I literally took a nap till we were done because I’m always up early.
The biopsy, you have to get anesthesia and all that stuff. That’s never pleasant, but it’s important, so you put up with it.
I’ve been through so many surgeries in the last several years that it was like, “Okay, what’s one more, here we go.”
The most annoying part about it is really the IV needle, but other than that, you’re under anesthesia so you don’t really realize it. Then you wake up, and boom, you’re done.
Getting Diagnosed
The benefit of “aggressive” doctors
I was very fortunate. I had access to good doctors, and that’s not to say other people’s doctors aren’t good or anything like that.
I had doctors who are good and aggressive. As aggressive, if not more aggressive than the cancer itself. I think that if it had been more of a wait and see, my patient story might have been a little different.
Describe the appointment when you got the diagnosis
It was one of those things where I did the biopsy and made an appointment for follow-up at the same time. I didn’t really think anything of it. I just assumed. I guess I thought that if there was a problem, they were going to call.
My doctor came in and closed the door, and he said, “I always like to have these meetings face to face.” It was my first like, “Oh. Wait. What? What does that mean?”
Then he went into it. Truly, I was thinking, it wasn’t even really about the cancer as much as I was like, “Oh, my god. My wife is going to kill me.”
Obviously, she’s very compassionate. She wouldn’t want me getting that diagnosis by myself. Realistically she’s thinking, “What’s the doctor going to think about me as a wife not being there to be there with her husband to get this potentially life-changing news?”
I took in what he said but I just kept thinking, “She’s going to kill me.” If the prostate cancer doesn’t, she will!
How did you break the news to your family
I called my wife and said, “Okay, I’m on my way back.” She said, “What did the doctor say?” I had waited till I was almost home. Then I said, “I’m just around the corner. Let me get home.” She goes, “I don’t like the sound of that.” I said, “I’m literally 30 minutes away. Then we can talk.” She was upset obviously.
We waited till the weekend to tell our kids. I’ve got a 33-year-old daughter from a previous marriage, and then we’ve got a 22-year-old who’s in college in Paris, and our 18-year-old son who lives with us here. The family Zoomed and I explained.
They were very upset, obviously. I said, “It’s okay. Doctor said, yes, it’s aggressive. I’m not going to sugarcoat this, but he said we caught it early.”
At that point, I hadn’t decided on treatment. In my heart of hearts, I’d decided I was going to have surgery, but I wanted to do due diligence only because I’m one of those people.
I had the idea that’s just in there and, “Well, we’ll do the radiation, and the CyberKnife, and there’s the focal thing, and then we have to wait to see that it…” I’m like, “No. Let’s just get rid of this.”
My son, Nick, is very sweet. He’s a sweet boy, and he’s got some learning issues. He was really upset and was kind of reacting.
We realized it was happening right about the same time as Alex Trebek. He was conflating pancreatic cancer with prostate cancer. I think he thought I was a goner. It’s like, “Nope. Dad’s going to be around a while longer to bother you.
It was tough on my middle girl because, at the time and still, she was stuck in Paris because of the pandemic so she couldn’t come over. They’ve been very supportive and happy that everything’s turned out okay.
I had the surgery done at the beginning of November. I had a shoulder replacement in August, and I’m still doing rehab on that.
Whereas the most difficult part of this has been, you come home and you’ve got a catheter for a week, which it’s not the worst thing in the world, though not the greatest thing.
It was less of a problem than I thought. There are the issues of a little incontinence, a little erectile dysfunction, but that’s rectified itself.
What’s your follow-up protocol
Then in January, went for the bloodwork. The PSA level was below .05. Now every six months, I go get a PSA test and every six months thereafter, bloodwork, knock on wood.
ßIt’s five years with no problems, and then it’s once a year. You do bloodwork once a year anyway.
How did you process the news of no evidence of disease
Dr. Vincent Laudone was my surgeon, and he’s obviously a real pioneer in this area. Somebody like that has done a whole ton of these. He was very optimistic after the surgery.
We were doing pathology during the procedure. We took out the lymph nodes surrounding that area, didn’t see anything. I was already cautiously optimistic. You’re still waiting for that blood work. Once you get that, it’s a real weight off, and then you’re like, “Okay.”
Now the clock starts again for the next six months. You probably get a little anxious right before that, but here we go.
Survivorship: How do you manage waiting for the next test results
I always keep thinking that five minutes before the doctor walked in, I felt one way. Then five minutes or 30 minutes later, when I’m walking out the door to get in the cab, it was like always this kind of weird because I don’t really feel any different, but somebody says, “Oh, by the way, you have cancer.” Those three words.
Then all of a sudden, you don’t feel differently, you are different. It’s the same with this. You’re still going to be living every six months, but you’re alive. I don’t really think about it. It’s a good feeling.
What’s your message to men who are reluctant to get screened for cancer
I wouldn’t understand it. Listen, if you have problems finding healthcare or something like that, maybe, I guess. If you’re a guy who goes to the doctor once a year for the physical, you’re already there.
What’s the big deal?
Again, it’s that finger moment (digital exam). That was funny because all along doctors said whenever I had the exam, “It doesn’t seem swollen. You’ve got a small prostate,” which was great. If you’re going to the doctor anyway, why not?
What’s your message specifically for Black men, who are 50% more likely to get diagnosed with prostate cancer and 2x as likely to die from it
You can ignore it at your own peril, but if you love your family, love what you do, love the people around you, you’ve got to do this.
There’s no stigma to it. Just get it done. Make sure you’re going to be around for your family.
It is imperative.
There’s more research being done, but until that happens, you have to make sure you’re going to do what you can to minimize your risks of disease.
This is a disease that we’re more likely to get. You just have to do it. There’s no ifs, ands, or buts about it.
Can the messaging to the African-American community be better
I don’t know that it’s so much the messaging as it is access. Look, the current healthcare system is, I’m not saying this in a negative sense, but it’s a little bit of a factory to it.
Doctors, unfortunately, have to move their patients through. I’m not saying that these are not dedicated doctors and they don’t care about their patient’s health, they do, but by the very nature of the way the healthcare system works now, you can’t spend a lot of time [with each patient].
The importance of access to healthcare for communities of color
The problem with prostate cancer is, there are generally no outward symptoms, but if there are, you’re pretty well down the line with the progression of the disease.
I think making sure that in communities of color, where there can be medical treatment deserts, just like there are food deserts and pharmacological deserts, pharmacy deserts.
We have to make sure that there is access for this.
Al with his family (source: @alroker)
How important is it to get more diversity in clinical trials?
You look at what we just went through in the pandemic, when obviously, communities of color were far more impacted by the pandemic.
But when it came to the vaccine, there was a very huge push to have a real diversity in the folks who were tested so that we knew that this was safe across all ethnic groups, male and female, things like that.
I think from a research standpoint, especially given that this is far more impactful to men of color, the studies have to reflect that, as well.
What’s the importance of the patient story of people like us speaking out of industries listening to patients?
People have to, especially the medical industry. It’s, in a sense, kind of cut and dry, especially when it comes to diagnoses, treatments, medical interventions.
You tend to forget that these are people. I don’t think it’s a malicious forgetfulness. It’s just data and medical research treatment, there are a lot of data points, but those data points come from people.
When he read about Al Roker’s prostate cancer diagnosis, Clarence Seegars sent a message of support on social media. He wanted Al to know that he would be okay.
Hearing about it also inspired Clarence to share his own powerful story of getting diagnosed with prostate cancer.
