Although Mac Howard has spent the last 16 years without a bladder-cancer recurrence, he never feels truly free. The 58-year-old Indiana resident still studies his urine for any traces of blood, and every time he marks another anniversary of his diagnosis, there’s a twist of fear in his stomach.
“It’s always in the back of my mind,” he says. “At times, the anxiety has been crippling, and I know my wife and three kids have been affected by that. The recurrence rate for bladder cancer is fairly high, and going as long as I have doesn’t feel like a success—it’s more like suspense. Is this going to be the month it comes back?”
More than 81,000 new cases of bladder cancer will be diagnosed in 2022, according to the American Cancer Society, and the five-year recurrence rate is 50% to 70%.
According to a 2020 survey of nearly 600 people living with bladder cancer conducted by the online patient community Health Union, 18% of respondents were diagnosed with depression and 16% with anxiety. About 60% said they experience anxiety about their cancer returning, and 23% have searched the terms “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’re often dealing with changes in body function and sometimes body image, as well as possible sexual health changes,” says Dr. Shawn Dason, a urologic surgeon with The Ohio State University Comprehensive Cancer Center. “There can also be shifts in sleep quality or a need for smoking cessation since bladder cancer is strongly linked to smoking, and it can all feel overwhelming.”
Fortunately, there are some strategies that can be useful, no matter where you might be on your cancer path.
Focus on what you can control
Dealing with a bladder-cancer diagnosis is tough enough—but it’s common for patients to have even more going on, like a secondary cancer, which can lead to feelings of helplessness.
In the Health Union survey, 30% of respondents had been diagnosed with another cancer either before or after their bladder-cancer diagnosis. And 87% reported other health conditions like high cholesterol, hypertension, and arthritis.
Having a secondary cancer, in particular, can make it feel like bad news is always just around the corner, says New Jersey resident Rebecca Capizzi, 52, who was diagnosed with bladder cancer in October 2020, but had ovarian, thyroid, and breast cancer before that.
“It’s hard not to be in a fight-or-flight response all the time, especially when I have tests coming up,” she says. “I have dread in the pit of my stomach just thinking: What’s next? I’ve already been through so much with surgeries and chemo, but it still feels like this will never end for me.”
That’s why 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’s in active treatment and can only do minimal physical activity, she takes short walks because it boosts her mental health so much.
“Staying active is a huge stress reliever for me,” Capizzi says. “When everything feels like it’s too much, I know that I can move my body, and that makes a difference.”
It’s important to understand how destabilizing a cancer diagnosis can be, adds Naomi Torres-Mackie, a clinical psychologist at Lenox Hill Hospital in New York, New York. There can often be a conflation of “sick” with “weak,” she says, and bladder-cancer treatments might heighten that feeling. Incorporating more exercise might be a way to build an emotional sense of strength as well as the physical resilience needed for treatment, Torres-Mackie says.
Read More: Why Pelvic Floor Rehabilitation Is Key For Bladder Cancer Patients
Accept help from others
Even when friends and family are eager to provide assistance, accepting help can be difficult because it may feel like a loss of autonomy, says Dr. Shanthi Gowrinathan, a psychiatrist specializing in psycho-oncology at Saint John’s Cancer Institute at Providence Saint John’s Health Center in Santa Monica, Calif.
“With bladder cancer, especially if you have changes to your bodily function, it can come with difficulty navigating social situations,” she says. “There’s social stigma, shame, awkwardness, and embarrassment. Because of that, people tend to withdraw and become more isolated. Unfortunately, that can make you feel more demoralized.”
Allowing others to lend a hand can counteract those feelings of isolation—as well as the idea that you have to do everything yourself, says Capizzi. It was challenging for her to accept the many offers from her family, friends, and colleagues to provide support, such as bringing food 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 do the leaning.”
Consider talking with 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 with a trained therapist may give you more freedom to express all the anger, fear, frustration, and sadness that may be layering inside you, Howard says.
“My top advice to anyone with bladder cancer is to get a therapist,” he says. “Family means well, and they have the best intentions when they’re willing to listen, but it’s difficult to unload all of this on your loved ones. For me, I needed a safe space where I could cry and rant and just let go. Also, a therapist doesn’t just listen. They help you work through what’s happening, and they can help you create a plan that gives you a path forward.”
Specific mental-health treatments have been proven to be effective for cancer patients, adds Torres-Mackie, such as cognitive behavioral therapy (CBT). A 2019 study in the journal Urologic Oncology found that CBT and other mental-health interventions done both pre- and post-treatment for bladder cancer played an important role in health outcomes. The researchers noted that depression and anxiety can raise postsurgical complication rates and affect long-term survival rates. That means therapy isn’t just about helping you feel better emotionally right now—it could 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, there was debate among her doctors about what type it might be. At the time, she was 28—and the average age for bladder-cancer diagnosis is 73. About 90% of those diagnosed with the condition are over age 55. In addition to being younger than most patients, Tellekamp didn’t have any of the top risk factors associated with bladder cancer, such as smoking or regular exposure to chemicals like paint or solvents.
When doctors finally settled on a diagnosis, the news was worse than she feared: metastatic, stage IV bladder cancer. One doctor told Tellekamp’s husband and mother that it was doubtful she’d make it to her next birthday, which was three months away. Thanks to immunotherapy, she sailed past that birthday and a couple more since then, but she feels like she’s in “extra innings” now.
The confusion, terror, and dramatic news in those first few months—paired with frustrating insurance issues—led Tellekamp to start a blog, even though she didn’t think anyone would read it.
“It felt like screaming into the void,” she recalls. “But it was very cathartic from the start. Also, I thought maybe there would be a chance I’d find other young people with bladder cancer, which tends not to be the case in support groups.” Not only did she find those connections, but she extended her outreach onto social media and began contributing to a group chat of people with metastatic cancer.
“When you know you’re not going to ring that bell signaling the end of your cancer treatment, you can feel really alone,” Tellekamp says. “Community becomes hugely important.” Deepening those friendships provides her with a sense of control, she adds, because she feels like a patient advocate, helping others through feelings and situations that have been challenging for her, too.
Read More: The Latest Breakthroughs That Could Help Bladder Cancer Patients
Grieve your loss
Tellekamp’s mother, who had thyroid cancer a few years ago, has been a major source of support through treatment. One piece of wisdom she shared that’s been particularly meaningful is, “Let yourself grieve for who you won’t be again.”
That means that even if you go into remission or are declared cancer-free, you’ll never again be the person who existed before cancer. That realization can feel like a gut punch, Tellekamp says. There can also be tension around the desire to stay positive and cheery whenever possible. But Tellekamp believes that if you don’t acknowledge your identity has shifted, those feelings get lodged inside of you, instead of being released. It’s important not to live in the darkness of profound loss for the former version of yourself you had to leave behind.
“Sometimes, I set a timer for 15 minutes for grief, and then I cry and scream,” she says. “When the timer goes off, I get up and go fold the laundry. You can’t stop living and live in your grief, but you also can’t pretend it’s not there. You have to respect the grieving process and find ways to let it out.”
When considering the effects of bladder cancer, the term “silver lining” may seem incongruous. But Howard notes that even anxiety over potential recurrence can 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 get to it,” he says. That led to a stint as a part-time prison chaplain, as well as getting tattoos that he’d hesitated over previously, worried about what people might think. He also takes more time to simply be present and mindful, and to soak in feelings of gratefulness for how far he’s come.
“If I could go back in time, I wouldn’t change anything, even getting cancer,” he says. “It’s made me who I am, and I’ve had 58 amazing years. I don’t know how many I have left, but I’m going to be here, fully, for all of them.”
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