Categories
Bladder Cancer

Diagnosis and Treatment for Bladder Cancer

Diagnosis and Treatment for Bladder Cancer

How is Bladder Cancer Diagnosed?

One or a combination of several of the following tests may be used to diagnose bladder cancer:

  • Cystoscopy – Your doctor inserts a small tube known as a cystoscope through your urethra to examine your urethra and bladder for signs of cancer.
  • Biopsy (TURBT) – Collecting a cell sample to analyze for cancer. This is sometimes done during a cystoscopy by passing a unique tool called a resectoscope through the cystoscope. 
  • Urine Cytology – A urine sample is analyzed under a microscope to check for cancer cells.
  • Urine Tumor Marker Test – Urine samples are taken to analyze for certain substances (markers) commonly linked to bladder cancer cells.
  • Computerized Tomography (CT) Urogram – A contrast die is injected into a vein in your body that eventually flows through the kidneys, ureters, and bladder. X-ray images are taken during the test to provide a detailed view of your urinary tract and assess potential cancer areas.
  • Retrograde Pyelogram – similar to a CT urogram, but done in reverse to get a better look at your upper urinary tract. A doctor will thread a catheter through your urethra to inject contrast dye into your ureters. While the dye flows to the kidney, x-ray images are taken.

Cystoscopy, in combination with a biopsy, is typically used as the definitive test for bladder cancer. However, different tests may be used depending on your symptoms and personal situation.

[during the cystoscopy] they’re basically slipping a tiny tube with a camera through your urethra to head on into the bladder and have a look-see around. That’s being shown on a screen.

– Margo W. | Read More

Diagnosing the Extent of Bladder Cancer

If it appears that the bladder cancer has spread, your doctor may recommend additional tests to see if it has spread to other parts of your body. This helps when determining the grade of bladder cancer. Some of the tests to diagnose the extent of bladder cancer include:

  • Additional CT scans
  • MRI
  • PET scans
  • Bone scans
  • Chest x-ray

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.

Ebony G | Read More

Grading Bladder Cancer

When bladder cancer is diagnosed, it is also given a grade. Grading is done on a scale of 0 – IV, with IV being the most severe. Grading for bladder cancer is based on the TNM scale, which essentially assesses how far the tumor has grown through the bladder wall if it has spread to the lymph nodes, and if it is metastatic.

Your doctor may perform additional diagnostic tests to grade the bladder cancer. While all bladder cancer is important to treat and monitor, the higher the grade, the more urgency there is for action. 

Visit our bladder cancer overview page to learn more about staging.

Treatment for Bladder Cancer

There is no one set treatment plan for bladder cancer. Treatment options and recommendations will vary based on several different factors, including:

  • The stage of the cancer
  • Your age
  • Expected impact of the treatment 
  • Other health conditions you may have

When working through the treatment options with your care team, it’s essential to ask questions and understand each treatment’s benefits and potential side effects.

Bladder Cancer Surgery

Transurethral Resection of Bladder Tumor (TURBT)

As you may have noticed, transurethral resection is one of the procedures used to diagnose bladder cancer. However, it can also be used to treat early-stage bladder cancer.

A TURBT uses a resectoscope to go into your bladder through your urethra to remove abnormal tissue or tumors. 

Occasionally, a surgeon will need to perform fulguration after removing a tumor. This involves using a high-energy laser to burn any potentially remaining cancer cells.

A TURBT is considered a surgery, but the side effects are generally mild, and most people can go home from the hospital the same day as the surgery.

Cystectomy

When bladder cancer is invasive (it’s spread into or through the bladder muscle wall), you may need to have a cystectomy to remove either part or all of the bladder. 

  • Partial cystectomy – if the cancer has only spread to one part of the cancer, then your doctor may be able to only remove part of the bladder. Lymph nodes near the tumor may also need to be removed. This helps a patient avoid reconstructive surgery.
  • Radical cystectomy – If the cancer has spread to several parts of the bladder, your doctor may have to remove the entire bladder. In men, the prostate and seminal testicles are also removed. While in women, the ovaries, fallopian tubes, uterus, cervix, and part of the vagina are also removed.

If you have to have your entire bladder removed, you will require reconstructive surgery to allow your body to store and pass urine. The different types of reconstructive surgery include:

  • Incontinent diversion – a portion of the intestine is used to create a passage from your ureter (tubes that carry urine from the kidney) to the skin on your abdomen via a small opening known as a stoma. Urine then flows continuously into a bag stuck on your stomach that is periodically emptied.
  • Continent diversion – works similarly to an incontinent diversion, only there is a valve that prevents the continuous flow of urine. However, the urine must be removed via a catheter several times daily.
  • Neobladder – the surgeon creates a “new” bladder by using a piece of intestine to connect your ureter back to the urethra. This allows you to urinate normally; however, you have to urinate on a schedule as you won’t get the feeling that you need to “go.”
LaSonya D. feature profile

What type of diversion am I going to have? Did I want to have a bag? No, I’m 52 years old. Why would I want a bag if I don’t have to?

LaSonya D. | Read More

Unfortunately, there are several side effects associated with all types of cystectomies, including:

  • Infections
  • Blockages
  • Urine leak
  • Incontinence
  • Absorption issues

Depending on whether it was a partial or radical cystectomy, both men and women can be impacted sexually by the surgery. Men may lose the ability to produce sperm or get an erection, while women may lose the ability to orgasm, and sex may become uncomfortable.

Chemotherapy

Chemotherapy is a form of drug therapy used to kill cancer cells or prevent them from dividing. As a treatment for bladder cancer, chemo is typically given in one of two ways:

  • Systemic chemotherapy – the chemo drug is injected into a vein to enter the bloodstream and reach cancer cells throughout the body. 
  • Intravesical chemotherapy – A tube is inserted through the urethra to flush the bladder with chemo drugs. 

Chemotherapy can be given before surgery to shrink a tumor pre-operation, after surgery to prevent the chances of cancer returning, in combination with radiation therapy, or as the main form of treatment for bladder cancer. 

Vickie D.

The one that I wanted was the dd-MVAC (dense-dose methotrexate, vinblastine, adriamycin, and cisplatin). You go in one day and they give you two of the drugs. Then you go in the second day and they give you the rest of them. That’s for two months, two times a week, every other week for two months.

Vickie D | Read More

Immunotherapy

Immunotherapy is a treatment used to help a patient’s immune system fight cancer. Before starting immunotherapy, your doctor may recommend running biomarker tests to identify the most effective drug.

  • Systemic immunotherapy – immunotherapy drugs commonly used to treat bladder cancer via injections into the vein include avelumab, novolumab, and perbrolizumab. 
  • Intravesical immunotherapy – the main immunotherapy drug used to treat bladder cancer via a catheter insertion is BCG (bacillus Calmette-Guérin). 
Karen R. at home

For this type of cancer (urothelial bladder cancer), BCG is immunotherapy. It’s actually the tuberculosis vaccine and it’s the most effective treatment.

Karen R | Read More

Targeted Therapy

Targeted therapy blocks cancer-causing actions by proteins, enzymes, and other molecules. Some commonly used targeted therapy drugs for the treatment of bladder cancer include enfortumab vedotin, erafitnib, ramucirumab, and cacituzumab govitecan-hziy. 

Clinical Trials

The possibilities for bladder cancer treatment are ever-growing. If there isn’t a viable treatment option for you, there may be a clinical trial that you can enroll in. To find active bladder cancer clinical trials visit the NIH’s Nation Cancer Institute’s supported clinical trial search.

Treating Bladder Cancer by Stage

While there are several options for treating bladder cancer, different approaches may be taken at different stages of the cancer. 

  • Stage 0 – TURBT with fulguration followed by intravesical chemotherapy
  • Stage I – TURBT with fulguration is used to determine the extent of the cancer. If it’s low grade (slow growing), a second TURBT is typically given by intravesical BCG or intravesical chemo. A radical cystectomy may be recommended if it’s high-grade (fast-growing).
  • Stage II – surgical removal of the infected area of the bladder and potentially the lymph nodes is recommended at this point. This may be followed with radiation treatment or rug therapy if there’s a risk of cancer returning. 
  • Stage III – Chemotherapy to shrink the tumor, followed by a radical cystectomy, is typically recommended. Following surgery, the patient is closely monitored and potentially given drug therapy to ensure the cancer doesn’t return.
  • Stage IV – Chemotherapy is the main treatment for stage IV bladder cancer. Surgery at this point won’t likely remove all of the cancer, so treatment is aimed at slowing the growth of the cancer. Your doctor may recommend you for a clinical trial.

While these are the standard treatments for each stage of bladder cancer, your treatment plan may vary based on your situation and how the cancer progresses. 

Categories
Bladder Cancer

Bladder Cancer Causes & Symptoms

Bladder Cancer Causes & Symptoms – Described by Real Patients

While the specific cause of bladder cancer may be unknown, there are risk factors and symptoms that may indicate you should take extra precautions to limit your chances of getting bladder cancer or may already have it.

In this article, we look at the gene mutations that cause bladder cancer, some of the risk factors associated with bladder cancer, and the symptoms of bladder cancer. 

What Causes Bladder Cancer?

Bladder cancer occurs when cells in the bladder develop mutations in their DNA and begin to multiply rapidly. DNA is a chemical in our cells that make up our genes, which help control the function of cells. 

There are two types of genes that impact cancer by determining when cells grow, divide, and die:

  • Oncogenes – help cells grow and divide
  • Tumor suppressor genes – help repair mistakes in the DNA, control cell division, and cause cells to die

Sometimes gene mutations cause cancer by allowing the oncogenes to stay on constantly or the tumor suppressor genes to remain off. This change can create an abundance of abnormal cells. Eventually, the abnormal cells replace healthy cells and form a tumor.

Can Bladder Cancer be Inherited?

When we think of genes, we often think about the traits that we inherit from our parents. However, when it comes to gene mutations, they can be acquired or inherited.

Most people do not inherit gene mutations that cause bladder cancer. However, it is possible to inherit genes that increase your risk of getting bladder cancer due to a reduced ability to break down cancer-causing chemicals.

Most of the gene mutations related to bladder cancer are from gene mutations that are acquired during your lifetime. While chemicals associated with cancer may cause the mutations, they can also occur from random events occurring within a cell.

What are the Risk Factors of Bladder Cancer?

While researchers don’t know what causes genes to mutate and become cancer cells, there are certain risk factors that have been identified as increasing your risk of getting bladder cancer. According to the Cleveland Clinic, some of these risk factors include:

  • Smoking or exposure to second-hand smoke – inhaled smoke gets processed through your body. As a result, some of the harmful chemicals eventually end up being excreted into your urine, where it sits in your bladder.
  • Radiation exposure – radiation therapy to treat other forms of cancer may increase your risk of getting bladder cancer.
  • Exposure to certain chemicals – since your kidneys filter harmful chemicals from your bloodstream to your bladder, it is believed that some of these chemicals may contribute to an increased risk of bladder cancer. Some chemicals linked to bladder cancer include arsenic and chemicals used in producing dyes, rubber, textiles, leather, and paint products.
  • Frequent bladder infections – those with a history of reoccurring bladder infections due to inflammation may be at increased risk of squamous cell bladder cancer.
  • Being over 55 – the risk of bladder cancer increases as you age. The majority of people diagnosed with bladder cancer are over the age of 55.
  • Being male – men are at a higher risk of bladder cancer than women.
Karen R. at home

“Unbeknownst to me at the time and to a lot of people now, there are plastic softeners in catheters that have DEHP (di(2-ethylhexyl) phthalate) in them and that is, of course, a known carcinogen. It’s a combination of a foreign object repeatedly going in and out of your bladder and then the infections. I’m working now and advocating to get DEHP and other carcinogens out of catheters because we need to be able to eliminate that.”

Karen R. | Read More

Can Bladder Cancer Be Prevented?

While limiting risk factors can help decrease your chances of getting bladder cancer, it doesn’t necessarily mean that you won’t get it. However, aside from living a generally healthy lifestyle, there are a few things that you can do to lower your risk:

  • Avoid smoking – smoking increases your risk for most cancers, but it is especially bad for bladder cancer. If you smoke now and want to quit, smokefree.gov provides some excellent resources to get started. 
  • Limit exposure to chemicals – while some substances linked to bladder cancer can’t be avoided. Limiting exposure to chemicals used in leather, rubber, textiles, and paint is best. If you work with these items daily, practicing proper workplace safety habits is essential.
  • Drink water – heard this one before? Drinking plenty of water is not only good for your health overall, but it may lower your risk of bladder cancer.
  • Eat fruits and veggies – some studies suggest that eating fruits and vegetables may significantly decrease your risk of bladder cancer.

Bladder Care Symptoms

The signs and symptoms of bladder cancer can vary based on how far the cancer has progressed. However, the general symptoms of bladder cancer include the following:

  • Blood in urine
  • Painful urination
  • Back pain
  • Frequent urination or not being able to empty your bladder fully

While the above symptoms don’t necessarily indicate that you have bladder cancer, you should visit your healthcare provider if you are experiencing them.

“I think one of the things that is very common for cancer patients is that we don’t feel anything. Nothing’s up. We don’t have any pain symptoms or discomfort or anything like that. It was the same for me, except for that one day late in November, I noticed that my urine was the color of rosé, like a deep rosé.”

Margo W. | Read More

“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. “

Ebony | Read More

Early Symptoms of Bladder Cancer

In its early stages, bladder cancer can present symptoms associated with abnormal changes in your urination. Some of these symptoms include:

  • Having to urinate more frequently, especially at night
  • Feeling the need to urinate even when your bladder isn’t full
  • A burning sensation or pain when urinating
  • Having a weak urine stream or struggling to urinate

These symptoms often suggest other urinary tract issues like a urinary tract infection (UTI), bladder stones, or an enlarged prostate. However, if you are experiencing these symptoms, getting tested to determine the root cause is essential.

Late-Stage Symptoms of Bladder Cancer

As bladder cancer spreads beyond the bladder into other body parts, those impacted by the disease may experience different symptoms. Some of the symptoms of late-stage bladder cancer include:

  • Lower back pain, especially on one side
  • Loss of appetite
  • Extreme fatigue
  • Unintentional weight loss
  • Swelling in the feet
  • Bone pain

Are There Different Bladder Cancer Symptoms for Men and Women?

The symptoms of bladder cancer are generally the same for both men and women. However, bladder cancer is more prevalent in men than in women, but women tend to get diagnosed at a later stage than men.

Additionally, it may take longer for older women, particularly women of color to be diagnosed, according to Dr. Samuel Washington, a urologist oncologist and assistant professor in residence at the University of California, San Francisco.

He says, “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.”

More Bladder Cancer Patient Stories

Vickie D.

Vickie D., Bladder Cancer



Symptoms: Intermittent pain in the gut and burning sesnsation

Treatments: Chemotherapy (dd-MVAC), surgery (cystectomy)
Michelle R. feature profile

Michelle R., Recurrent Bladder Cancer, Stage 1



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)

Margo W., Bladder Cancer, Stage 1



Symptom: Blood in urine



Treatments: Chemotherapy (methotrexate, vinblastine, doxorubicin & cisplatin), surgery (radical cystectomy)
LaSonya D. feature profile

LaSonya D.



Symptom: Blood in urine
Treatment: BCG immunotherapy, cystectomy (bladder removal surgery)
LaSonya D. feature profile
LaSonya D., High-Grade Bladder Cancer

Symptom: Clumps of blood in urine Treatments: Surgery (bladder removal, Indiana pouch), BCG immunotherapy
Categories
Bladder Cancer Patient Stories

Bladder Cancer Series: Patient Stories

Bladder Cancer Series: Through the Eyes of Black Women

“The Bladder Cancer Series,” focuses on Ebony, who was diagnosed with stage N2 bladder cancer, and LaSonya, who was diagnosed with high-grade bladder cancer.

In this series, 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.


Janssen

Brought to you in partnership with Imerman Angels. Sign up to get one-on-one peer support here.

Thank you to Janssen Oncology for its support of our patient education program! The Patient Story retains full editorial control over all content.

This interview has been edited for clarity. This is not medical advice. Please consult with your healthcare provider for treatment decisions.



Ebony G.
Ebony G.

Introduction

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.

LaSonya D.
LaSonya D.

Initial symptoms

Ebony: After an annual visit with my gynecologist, they noticed a microscopic level of blood in my urine.

LaSonya: 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.

Ebony's surgery day
Ebony on the day of her surgery

What was your reaction to the diagnosis?

Ebony: 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: 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.

Dr. Samuel Washington

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.

Dr. Samuel Washington scrubbing in

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: 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.

LaSonya D. seated with heart-shaped pillow
Ebony with part of her team at Duke Raleigh

Ebony: I remember looking in the social media group, trying to just scroll and see: who can I relate to?

The power of connection

LaSonya: 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.


Episode 2

The power of connection

LaSonya: When Ebony came on to the bladder cancer support group, she posted something and there was something in the background of her picture that let me know that she was in the same sorority that I was in.

Ebony: [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] hadn’t found anyone [who] 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.”

LaSonya: I got so excited, especially because there [were] not very many black people at all in the support group. There’s just not a high percentage of black people that have bladder cancer.

Ebony: It was 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.

LaSonya: It’s very important. It keeps you going. It empowers you. 

Ebony G. sorority
Ebony G. in the hospital

Black women have higher stages of the disease & worse survival rates

Ebony: 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. What’s going on?

[I felt] despair at some points because I just really didn’t know. I was wondering if there was something underlying. I was Googling things [and] trying to figure [it] out. [I was] just confused and lost as to how the professionals don’t know.

I remember thinking, I trusted you for a year and a half to try to find something. What was it about everything that has gone on in the past year and a half where you didn’t find anything?

LaSonya: It seemed like it was a lot of blood. I saw some blood clots and I was thinking, I know I’m not on my menstrual cycle. What is going on? Maybe it’s something from my surgical procedure.

I called my surgeon and he said, “It doesn’t seem like something related to your surgery. Let’s do a urinalysis and see if you have a urinary tract infection.” I did that [and] it came back negative for infection, but positive for blood.

Signs & symptoms of bladder cancer “tend to be missed” in women

Dr. Samuel Washington: Women who are found to have repeated tests of blood in the urine or see blood in the urine sometimes 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 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.

LaSonya D. CSUCI

Differences in survival: access to care and type of care

Dr. Washington: 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 and that that is the cause of the differences and outcomes that we’re seeing, but how society is framing these people: black vs. white, insured vs. not, educated vs. not. All these different identities impact one another to lead to these outcomes that we’re seeing that our differences between groups.

Dr. Samuel Washington in OR

I commonly say no one’s intentionally contributing to disparities but also, very few of us are actively monitoring our own outcomes. The educational materials that we use, the required health literacy level for that, how we provide access to care for different patients, things that could help patients in terms of transportation, social work, and so on. Those things are not commonly measured at the same level that we monitor cancer diagnoses.

Representation matters: finding the right doctor

LaSonya: I was looking for a doctor that looked like me because I felt like I could trust a doctor that looked like me.

It’s just the things I don’t have to explain [like] the culture. There are certain things that when you’re holistically looking at a person or a patient, in my perspective, when I’m taking care of patients, I look at them holistically. 

Overcoming obstacles 

Ebony: I want people to know: you’re not the only one. I have fought through this.

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 evidence to help encourage you, let me be your evidence. You can fight this and win.”

Ebony G.

Episode 3

The impacts of bladder cancer

Ebony: As a Black woman, it actually takes a long time for our hair to get to the lengths we enjoy.

[I have] a lot of pride and joy in my hair. I call it my crown. For about seven or eight years, I decided to become natural so [I didn’t use] any chemical products in my hair [or] any relaxers to relax my curl pattern.

To find out it’s all going to come out, I think to myself, Is it going to grow back?

I was devastated. 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 [losing my] hair.

I remember getting it cut and coming home that night. My husband started crying. He was like, “You’re really having to do this. Here we go.”

3 main paths after the bladder removal surgery

Ebony: There were a few options. I could have the bag outside of the body. My brain was like, Okay, that’s the option. [A] bag outside of my body that I would need to empty.

I was wondering how my clothes are going to fit. Am I going to have to have additional things [I would need] to use the bathroom? Am I going to have to change what I wear? I usually would wear fitted things. Am I going 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.

Then there was an Indiana pouch, which my doctor didn’t do, and the neobladder, which is what I decided to go with.

Ebony G.
Ebony recovering from surgery

How much life changed after the bladder removal surgery

Ebony: My first appointment with the urologist was accompanied [by] this 3-inch binder [with] tons of information. There were sections [that talked] about what could happen after the surgery. One of those things was you could lose all ability to control how you use the bathroom. Those were the fears that I had.

[It covered] how it could impact your sexual relationships, your sexual relationship with your spouse. I remember thinking, Okay, this is a whole lot more than what I initially bargained for.

LaSonya: When you’re thinking about being married, young, and not having a vagina, that could be traumatic to your relationship. I never would have thought to ask but somebody in my support group brought it up. I talked to her and she became one of my close friends, too.

When she had her bladder removal surgery, they removed all of her vagina except for maybe two inches, which [meant] that she would have to come back later and have a reconstruction of her vagina. I was like, “Oh no, that is what I’m not doing. I don’t have [a] muscle-invasive disease so it’s not out of my bladder. I do not want to have no vagina.”

I was able to consult with the plastic surgeon. He went through the procedure. I said, “If they get in there and there’s a problem, I expect to wake up and still have a vagina.” He said, “If they get in there and they have to remove everything, then I’ll either take part of your muscle from your thigh or from your abdomen and I will make you a vagina. You’re not going to wake up and not have a vagina no matter what.”

It seems like something small when you have cancer, but it’s not. It’s still quality of life.

One of the things I was able to tell Ebony was, “Make sure you talk to them about vaginal sparing [so] you don’t wake up like another friend [who] only [has] a two-inch vagina and nobody told you anything.”

There [have] been a lot of people on the site whose partners left them. They have cancer and their partners leave. Because mentally, they can’t handle it or this situation. They can’t wrap their head around the fact that their sex life is going to be very different.

Ebony: 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.”

I would find myself stressing [about] 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.”

LaSonya: This is important. This is quality of life. It’s not just about living. It’s living your life abundantly and having the best life that you can possibly have.


Episode 4

Ebony G.

The power of the patient

Ebony: At the end of the day, no one knows your body like you do.

I just challenge everyone out there. 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.

What the medical industry can do is 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. Not only people who have won the fight, but put people 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.

LaSonya: He had a picture in his mind of who I was and what my life was like. He already had his own stereotypical thoughts about who I was.

I actually worked in the same healthcare organization that he worked in. He did not treat me well as a patient. Thankfully, because I’m a clinician, I was able to identify that right away.

Go with your gut. If you feel like something is not quite right, get a second opinion. You’re entitled to a second opinion and some insurance will even pay for a third opinion. Do not feel like you’re stuck with that person.

I never have been one to put all my trust in another human being. I felt like I needed to do my own research and have my own questions ready so that I know that I’m getting the best care possible. The experience I have with urologists made it even [clearer] to me that my approach is the best approach for me.
You have to do what’s right for you. Get all the information that you possibly can and then you decide what’s best for you. You’re the one that’s going to have to live with your decision.

LaSonya D. home
Dr. Samuel Washington UCSF

Black urologists in the U.S. are extremely underrepresented

Dr. Washington: Not infrequently, a Black patient will say that they’re happy to see me or someone that looks like me. 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.

[In] the urologic workforce, less than 3% of us are Black. A much smaller percentage when you start to chip away and look at different subspecialties.

Often, I think what it comes down to 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.


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