Bladder Cancer Stories: Treatment, Diagnosis and Finding Support
In this segment, they open up about their cancer journey, including their first symptoms, how they processed their diagnosis, how they decided on treatment options and how they found support.
Dr. Samuel Washington, a urologic surgeon who specializes in oncology at the University of California San Francisco, also gives an overview of bladder cancer and its treatments.
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This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.
Ebony G.: I’m married. I have three sons. I’m an engineer by day.
I just want to live my best life and help others do the same.
LaSonya D.: I’m a variety of things. I’m a black woman, that’s the most obvious when you look at me, but I’m also a mother [and] a wife. I am a professor of nursing.
Ebony G.: After an annual visit with my gynecologist, they noticed a microscopic level of blood in my urine.
LaSonya D.: I had just recovered from an elective procedure and I was getting ready to go back to my regular work. One day, I noticed that I have blood in my urine.
What was your reaction to the diagnosis?
Ebony G.: I was 45 when I was diagnosed with bladder cancer. I was like a ball of tears. At that moment, I remember thinking, “I’m going to die.”
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.”
LaSonya D.: It’s devastating. How did I get this? No one in my family on either side has a history of cancer. How could this be? I don’t even know one black person that has this type of cancer.
I was a nervous wreck at that point. I felt so defeated and deflated. I just could not believe that this was happening to me.
Overview of bladder cancer
Dr. Samuel Washington: In general, we think of bladder cancer as either being muscle invasive, so growing into the muscle wall of the bladder, versus non-muscle invasive, where it’s just on the surface or on the lining of the inside of the bladder itself.
Treatment options for bladder cancer
Dr. Washington: Our treatments are different depending on which group you are in.
We know that 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 will get some guideline-concordant treatment.
Now, 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.
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. It’s taking the mystery out of medicine, but it’s really an algorithm. We find where these people fit in terms of staging and characteristics, we look at the guidelines, and they tell us what should offer the best outcomes for them.
Information for bladder cancer patients
Dr. Washington: There’s a lot of ongoing research for 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. Ask your provider. “Are there resources that I can look at? Are there clinical trials or support groups for information?”
Importance of having a support system
LaSonya D.: Three weeks after diagnosis, I was able to have my surgery for the resection. [While] waiting to have my surgery, I had questions for this doctor. I knew right away that this was going to be very stressful, not just for me but for my family. I knew that in order for me to get through this, I was going to need help.
A lot of times, people think that you have to take everything on yourself, especially being from my culture. Mental health is very taboo. People take it as a weakness when you need to seek out help mentally. You always hear people say, “Be strong. Suck it up. You can do this. Don’t be weak-minded,” those kinds of things.
We are human beings. We are not robots and machines. We have feelings. I joined a bladder cancer support group on Facebook. I just started looking for bladder cancer support.
Ebony G.: I remember looking in the social media group, trying to just scroll and see: who can I relate to?
The power of connections
LaSonya D.: There was something in the background of her picture that let me know that she was in the same sorority that I was. When I saw that, I just got so excited, especially because there [are] not very many black people at all [in] the support group. There isn’t a high percentage of black people that have bladder cancer. I was so excited.
Bladder Cancer Patient Stories
Bladder Cancer Series: Episode 1
Bladder cancer patients Ebony & LaSonya talk about their cancer journey, including their first symptoms, how they processed their diagnosis, treatment options and how they found support.