aAlthough Mack Howard has spent the past 16 years without a bladder-cancer recurrence, he never truly felt free. The 58-year-old Indiana resident still studies his urine for any traces of blood, and every time he celebrates another anniversary of his diagnosis, there’s a twist of dread in his stomach.
“It’s always in the back of my mind,” he says. “At times, the anxiety has been severe, and I know my wife and three children have been affected by it. The recurrence rate for bladder cancer is quite high, and until I feel like a success, it’s kind of a mystery. Will this be the month it comes back?”
According to the American Cancer Society, more than 81,000 new cases of bladder cancer will be diagnosed in 2022, and the five-year recurrence rate is 50% to 70%.
According to a 2020 survey of nearly 600 people diagnosed with bladder cancer conducted by the online Patient Community Health Association, 18% of respondents had been diagnosed with depression and 16% with anxiety. Nearly 60% said they experience anxiety about their cancer returning, and 23% have searched the words “mental health and bladder cancer” online. Only about 38% reported feeling emotionally supported through their cancer process.
“Bladder cancer can be highly stressful because you often deal with changes in body function and sometimes body image, as well as potential sexual health changes,” says Dr. Sean Dasan says. “Changes in sleep quality or smoking cessation may also be needed because bladder cancer is strongly associated with smoking, and it can all seem overwhelming.”
Fortunately, there are some strategies that can be helpful, no matter where you are on your cancer path.
focus on what you can control
Dealing with a bladder-cancer diagnosis is hard enough — but it’s even more ongoing for patients, such as secondary cancer, which can lead to feelings of helplessness.
In a health association survey, 30% of respondents had been diagnosed with another cancer either before or after their bladder-cancer diagnosis. And 87% reported other health conditions such as high cholesterol, high blood pressure and arthritis.
New Jersey resident Rebecca Capizzi, 52, who was diagnosed with bladder cancer in October 2020 but also had ovarian, thyroid and breast cancer, says having a secondary cancer, in particular, can feel like the worst. News is always around the corner. before this.
“It’s hard not to be in the fight-or-flight response all the time, especially when I have tests coming up,” she says. “I’m scared in the pit of my stomach just thinking: what’s next? I’ve already been through so many surgeries and chemo, but it still feels like it’ll never end for me.”
So Capizzi has focused on finding what helps her feel a stronger sense of control over her body and mind: exercise, especially walking. Even when she is in active treatment and can only do minimal physical activity, she goes for a short walk as it greatly boosts her mental health.
“Staying active is a huge stress reliever for me,” Capizzi says. “When everything feels like it’s too much, I know I can move my body, and it makes a difference.”
It’s important to understand how destabilizing a cancer diagnosis can be, says Naomi Torres-Mackie, a clinical psychologist at Lenox Hill Hospital in New York, New York. It can often be a conflation of “sick” with “weak,” she says, and bladder-cancer treatments can exacerbate that feeling. Incorporating more exercise can be a way to build an emotional sense of strength as well as the physical resilience needed for healing, says Torres-Mackie.
Read more: Why Pelvic Floor Rehabilitation Is Important For Patients With Bladder Cancer
accept help from others
Even when friends and family are eager to provide help, accepting help can be difficult because it can feel like a loss of autonomy, St. John’s Cancer Institute at Providence St. John’s Health Center says Dr Shanthi Gourainathan, Psychiatrist specializing in Psycho-oncology. in Santa Monica, California.
“With bladder cancer, especially if your bodily functions change, it can come with difficulty navigating social situations,” she says. “There’s social stigma, shame, awkwardness, and embarrassment. Because of that, people withdraw and become more isolated. Unfortunately, this can make you more depressed.
Allowing others to lend a hand can counteract those feelings of isolation, says Capizzi — as well as the idea that you have to do everything yourself. It was challenging for her to accept the many offers of assistance from her family, friends and co-workers, such as bringing over meals and walking her dogs.
“Most people want to be helpful, and they love when you take them up on their offer because they want to be useful,” she says. “You learn quickly who you can lean on. But it’s up to you to lean on.
consider talking to a therapist
Although being open with friends and family can help relieve the pressure that comes with bladder cancer diagnosis, treatment, and anxiety over recurrence, talking to a trained therapist can help you express anger, fear, frustration, and sadness. There can be more freedom to do. Layering your insides, says Howard.
“My top advice for anyone with bladder cancer is to get to a doctor,” he says. “Family means well, and they have the best intentions when they’re willing to listen, but it’s hard to take it all out on my loved ones. For me, I needed a safe place where I could cry.” and brag and just let it go. Plus, a therapist doesn’t just listen. They help you work through what’s happening, and they can help you make a plan that will help you. Gives way to move forward.
Specific mental-health treatments have proven effective for cancer patients, Torres-Mackie says, such as cognitive behavioral therapy (CBT). A 2019 study in the journal urologic oncology found that CBT and other mental-health interventions played a significant role in health outcomes both before and after bladder cancer treatment. The researchers noted that depression and anxiety can increase postsurgical complication rates and affect long-term survival rates. This means that therapy isn’t just about helping you feel better emotionally right now—it can have a profound effect on your physical health for years to come.
connect with other patients
When Atlanta resident Brittany Tellekamp, 32, was first diagnosed with cancer, her doctors debated what type it might be. At the time, she was 28 — and the average age for a bladder-cancer diagnosis is 73. About 90% of people diagnosed with the condition are over the age of 55. The top risk factors associated with bladder cancer, such as smoking or regular exposure to chemicals such as paint or solvents.
When doctors finally settled on a diagnosis, the news was worse: metastatic, stage IV bladder cancer. A doctor told Tellekamp’s husband and mother that it was doubtful she would make it to her next birthday, which was three months away. Thanks to immunotherapy, she overcame that birthday and a few more since, but she feels she’s in an “extra inning” now.
The confusion, panic and dramatic news in those first few months—paired with frustrating insurance issues—inspired Tellekamp to start a blog, even though she didn’t think anyone would read it.
“It felt like screaming into a void,” she recalls. “But it was very cathartic from the start. Plus, I thought maybe there would be a chance I’d meet other young people with bladder cancer, which doesn’t happen in support groups. She not only found those connections, but She increased her reach on social media and began contributing to group chats for people with metastatic cancer.
“When you know you’re not going to ring the bell signaling the end of your cancer treatment, you can feel really lonely,” Tellekamp says. “Community becomes extremely important.” Deepening those friendships gives her a sense of control, she says, because she feels like a patient advocate, helping others through feelings and situations that have been challenging for her as well.
Read more: Latest Breakthroughs That Could Help Patients With Bladder Cancer
mourn your loss
Tellekamp’s mother, who was diagnosed with thyroid cancer a few years ago, has been a major source of support through treatment. One piece of wisdom she shared that has been especially meaningful is, “Allow yourself to grieve for that which you will not be again.”
This means that even if you go into treatment or are declared cancer-free, you will never again be the person you existed before cancer. Tellekamp says this feeling can feel like a gut punch. There can also be tension surrounding the desire to be positive and happy whenever possible. But Tellekamp believes that if you don’t acknowledge that your identity has changed, those feelings get lodged inside you instead. It’s important not to stay in the dark about the deep loss you had to leave behind for a past version of yourself.
“Sometimes, I set a timer for 15 minutes to grieve, and then I cry and wail,” she says. “When the timer goes off, I get up and go to do the laundry. You can’t stop living and live in your sadness, but you also can’t pretend it’s not there. You need to understand the grieving process.” Gotta respect that and find ways to get it out.
When considering the effects of bladder cancer, the term “silver lining” may seem inconsistent. But Howard notes that anxiety over potential relapse can also be a benefit, depending on what you do with that energy.
“One thing cancer did for me was sharpen the understanding that if there’s something I want to do, I better do it,” he says. This led to a stint as a part-time prison chaplain as well as getting a tattoo, which he hesitated at first, worried about what people might think. It just takes longer to be present and to pay attention, and to bask in feelings of gratitude for how far he’s come.
“If I could go back in time, I wouldn’t change anything, even having cancer,” he says. “It made me who I am, and I’ve had 58 wonderful years. I don’t know how many I have left, but I will absolutely be here for all of them.”
Must read more from time to time