Coping With Vulnerability Amid Bladder Cancer
- American columnist Dan Koeppel, a 62-year-old dad of two, was shocked to learn of his bladder cancer diagnosis when his sons were just ages 5 and 9.
- Koeppel’s determination and continued hope through adversity is incredibly admirable and can offer any parent dealing with a cancer diagnosis some inspiration. The loving dad aimed to be “the best dad I could” during tough times.
- Bladder cancer is caused when cells that make up the urinary bladder start growing out of control, which can develop into tumors and over time, if not caught, spread to other parts of the body.
- Smoking is a leading risk factor for this disease with smokers being three times more likely to be diagnosed with bladder cancer than non-smokers.
- Fortunately, many bladder diagnoses are caught at an early stage, when the cancer is highly treatable. However, it is common for new occurrences or recurrences to occur even after successful treatments. Patients typically need follow-up tests done years after treatment, just Koeppel continues to do.
- SurvivorNet has created extensive step-by-step resources for bladder cancer patients here.
Now, approximately four years after his diagnosis, the former editor of Mountain Bike magazine, also known for having written columns for the The New York Times Magazine and Popular Science, has opened up on how he’s maintained his strength and determination amid his cancer journey and fatherhood.
#NewProfilePic pic.twitter.com/wl7A7SHtF2
Read More— Dan Koeppel (@soulbarn) May 26, 2021 In an essay, published this week for Business Insider and titled, “My cancer diagnosis made me decide what kind of dad I want to be. At 62, I didn’t want my young sons to see me as ‘sick,'” Koeppel recounted the emotions he felt when he learned he had bladder cancer in the midst of 2020.He wrote, “The options did not seem good. Should I get the dangerous surgery my doctor was urgently recommending? Or try something less invasive that would not “cure” my cancer but allow me to enjoy the summer with my two young kids?
“I’d first been diagnosed with Stage 3 bladder cancer in mid-2020. I had two boys, then aged 5 and 9. I had an aggressive tumor. The news made no sense — I had no risk factors, like prior tobacco use, and at 59, I was young for this type of disease but old to be a Dad to young kids.”
Koeppel, who married his 12-years-younger wife when he was 47, explained how he first underwent a “four-month course of chemotherapy” followed by the removal of half of his bladder through a “a doctor-guided surgical robot.” The procedure left him with a catheter and six abdominal scars.
RELATED: How Is Bladder Cancer Staged?
Eight weeks after surgery, Koeppel dealt with an infection at his surgical site and went into septic shock, but he recovered over the course of a year. About a year after his diagnosis, a routine checkup revealed his cancer returned and he needed additional surgery and immunotherapy.
Following the additional treatment, his cancer returned six months later, which led Koppel to need his bladder completely removed to prevent the cancer from spreading to other areas of the body.
He explained further, “Since the previous operation on my bladder had been nearly fatal, and such complications for this procedure were frequent, I felt myself resisting the advice and thinking of my kids. Bladder removal — the medical term is cystectomy, and about 25% of bladder cancer patients end up undergoing this procedure — means living with a ‘diversion,’ a kind of tube that routes urine out of your body.
“Such diversions are manageable, and many do well with them, but they’re not perfect. The operation often impairs sexual function. One option meant I’d likely have to sleep wearing diapers, and another required wearing a collection bag. Would I even be attractive to my wife? How was I going to roughhouse with my boys?”
Koeppel, who previously lost his dad to cancer, ultimately chose to delay his bladder removal surgery and instead take part in a bladder preservation strategy so he could enjoy his summer with his children and “be the best dad I could.”
“I didn’t want my kids to see me go to ‘war’ with cancer, a common metaphor that helps a lot of people but just isn’t my style. I wanted to approach my illness with determination but also acceptance, even curiosity,” he wrote.
Exactly one year ago I was being beaten up by stage 3 cancer and #chemotherapy. Today? To say I’m lucky and #grateful is beyond understatement. pic.twitter.com/bi5QuA6caH
— Dan Koeppel (@soulbarn) August 17, 2021
The bladder prevention strategy included him taking a new combination of drugs, Koeppel explained, adding, “For the next year, with the help of a new doctor, we pursued the bladder preservation strategy. It wasn’t easy. I had a major complication, kidney failure, that threatened to put me on dialysis.
“And the time I was on the therapy was truly not fun. But we succeeded in making my cancer ‘chronic.’ Right now, I show no sign of disease, and if it comes back, there’s about a 50% chance of that happening, but those numbers will improve as time goes by, we’ll deal with it.”
Koeppel concluded, “I understand that I’ve taken a risk. It feels worth it. When I was really sick, I remember walking my son to school. I was tired and moving slowly. My son silently locked his arm in mine and helped me as I stepped down the curb, scanning for traffic. I said goodbye to him at the schoolyard and made my way home in tears. I was proud of him, but I also felt determined to embrace however long the rest of my life would be, to get stronger, but never hide my vulnerability, and use that vulnerability the best way I could: as a source of strength for myself and my family.
Now with even MORE aloha than ever, thanks to @wirecutter @homesweethome @blam! pic.twitter.com/l5ajnAyopu
— Dan Koeppel (@soulbarn) February 1, 2017
Understanding Bladder Cancer
SurvivorNet experts explain that the bladder is a hollow, muscular, balloon-shaped organ that expands as it fills with urine. The bladder is an essential part of your urinary system, which also includes two kidneys, two ureters and the urethra.
Bladder cancer develops when cells that make up the urinary bladder start to grow and eventually develop into tumors. Smoking is a leading risk factor for this disease with smokers being three times more likely to be diagnosed with bladder cancer than non-smokers.
Dr. Arjun Balar, a medical oncologist at NYU Perlmutter Cancer Center, explains the risk factors for bladder cancer.
Bladder cancer occurs mainly in older people. About 9 out of 10 people with this cancer are over the age of 55. The average age of people when they are diagnosed is 73. Fortunately, many diagnoses are caught at an early stage, when the cancer is highly treatable. However, it is common for new occurrences or recurrences to occur even after successful treatments. Patients typically need follow-up tests done years after treatment.
Symptoms of bladder cancer may include:
- Blood in urine
- Frequent urination
- Painful urination
- Flank pain
- Urgency
Dr. Jay Shah, a staff surgeon, urologic oncologist and associate professor of urology at Stanford University, discusses the symptoms of bladder cancer.
Additionally, there are risk factors that make you more likely to develop bladder cancer. These include:
- Tobacco exposure: Smoking is the greatest risk factor for bladder cancer.
- Sex: Males are diagnosed with bladder cancer more often than females.
- Chemical exposure: Some chemicals used in dyes, rubber, leather, printing material, textiles, and paint products have been linked to risk of bladder cancer.
- Age: The risk of bladder cancer increases as you age.
- Genetic risk factors: Certain genetic alterations can predispose you to a higher bladder cancer risk. Lynch syndrome, for example, is a set of genetic alterations that can be passed among generations in a family and is associated with higher bladder cancer risk. If you have a first degree relative with bladder cancer you may have a higher bladder cancer risk yourself.
According to the National Cancer Institute, bladder cancer ranks as the sixth most prevalent cancer type in the United States overall, while it is the fourth most common among men.
Like any other cancer, bladder cancer can spread beyond the organ where it started. It can reach nearby lymph nodes, or other parts of your body.
WATCH: What Are The Surgical Options To Treat Bladder Cancer?
You may have been diagnosed with an advanced bladder cancer to start. Or you might have discovered that your cancer had spread after being treated for an early-stage cancer. Either way, your treatment direction will change.
In 2023, there were 82,290 new cases of bladder cancer and about 16,710 deaths from the disease In the United States, according to the American Cancer Society.
Of these cases, around 35% are classified as locally advanced, indicating that the cancer has spread to the surrounding tissues of the bladder, or metastatic, indicating that it has spread to other parts of the body.
Bladder cancer primarily affects individuals over the age of 55. Unfortunately, the five-year survival rate for these advanced cases is only 5%.
Historically, chemotherapy using cisplatin has been the standard treatment for advanced bladder cancers. Although cisplatin is highly effective, it carries significant toxicity risks, particularly for the kidneys.
Urologic oncologist Dr. Mark Tyson explains the treatment options for later-stage bladder cancer.
Considering that bladder cancer primarily affects an older population with potential kidney impairment, cisplatin is not always a suitable option.
Consequently, approximately 50% of cisplatin-ineligible patients have been treated with less effective drugs.
Learning to Deal With Vulnerability
The shame that people tend to feel after getting cancer comes from a sense of vulnerability, according to Dr. William Breitbart, the chair of the Department of Psychiatry and Behavioral Services at Memorial Sloan Kettering Cancer Center.
People feel ashamed that their bodies were susceptible to disease, that they have to undergo treatment, that maybe they’re not as strong as they’d like others to believe.
“What I will often point out to people, is that we have the ability to choose how we respond to this vulnerability,” says Dr. Breitbart. “We can be ashamed of it, or we can use it to create a sense of empathy.”
Facing Cancer as a Parent
Battling cancer as a parent is a huge challenge. And thoughts about leaving your children may be harder than the the actual diagnosis itself.
Telling Your Kids You Have Cancer ‘When it Comes to Your Kids, You Want to Protect Them’
In a previous interview with SurvivorNet, breast cancer survivor Gina de Givenchy shared her experience of telling her 12-year-old daughter she had cancer.
“I felt it was important to mask it because I really wanted her to know that I was going to be OK,” she said. “I didn’t want her to see me weak and sickly, when it comes to your kids, I think you always want to sort of protect them.”
Thinking of your children when you’re facing cancer can be incredibly daunting, but having little ones can also give cancer patients another huge reason to fight for their lives.
Jovannie Lorenzo knows this to be true. She was just 32 years old when she was diagnosed with colon cancer. In a conversation with SurvivorNet, she explains the immense fear she felt during her cancer journey. Not just because of the cancer itself, but also because of her three kids. As a single parent, Lorenzo knew she needed to do everything she could to be around to raise them.
Facing a Cancer Diagnosis as a Single Parent: “I Knew I Had to Fight for My Life”
“I knew that I had to do everything possible to be here for my children,” Lorenzo says. “They are my saving grace. They are the reason I wake up every morning. They are the reason why I fight every single day and I make a choice to be positive, to be happy, and to move forward.”
Contributing: SurvivorNet Staff
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