AAlthough Mack Howard has spent the last 16 years without bladder cancer recurrence, he never feels truly free. The 58-year-old Indiana resident still tests his urine for traces of blood, and every time he marks another anniversary of his diagnosis, his stomach churns with fear.
“It’s always in the back of my mind,” he says. “At times the anxiety is crippling and I know my wife and three children are affected by it. The recurrence rate of bladder cancer is quite high and going this long doesn’t feel like success – it’s more like a strain. Will this be the month he returns?”
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 by the online patient community Health Union, 18% of respondents had been diagnosed with depression and 16% with anxiety. About 60% said they were worried about the cancer coming back, and 23% had searched the terms “mental health and bladder cancer” online. Only about 38% reported feeling emotionally supported by their cancer process.
“Bladder cancer can be very stressful because you’re often faced with changes in body function and sometimes body image, as well as possible changes in sexual health,” says Dr. Shawn Dayson, a urologic surgeon at the Center for Comprehensive Ohio State University Cancer. “There may also be changes in sleep quality or the need to stop smoking, as bladder cancer is closely linked to smoking and all of this can feel overwhelming.”
Fortunately, there are some strategies that can be helpful no matter where you may be on the cancer journey.
Focus on what you can control
Coping with a bladder cancer diagnosis is hard enough, but it’s common for patients to have even more, such as a secondary cancer, which can lead to feelings of helplessness.
In the Health Union survey, 30% of respondents were diagnosed with another cancer before or after their bladder cancer diagnosis. And 87% reported other health conditions such as high cholesterol, hypertension and arthritis.
Having a secondary cancerin particular, it 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 trouble ovaries, thyroid gland and breast cancer previously.
“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 fear in the pit of my stomach thinking: What’s next? I’ve already been through so many surgeries and chemotherapy, but I still feel like it’s never going to end for me.”
That’s why Capizzi focused on finding what helped 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 takes short walks because it improves her mental health.
“Staying active is a huge stress reliever for me,” Capizzi says. “When it all feels too much, I know I can move my body and that counts.”
It’s important to understand how destabilizing a cancer diagnosis can be, adds Naomi Torres-Maki, 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 treatment can reinforce that feeling. Getting more exercise can be a way to build an emotional sense of strength as well as the physical resilience needed for treatment, Torres-Mackey says.
Accept help from others
Even when friends and family are eager to help, accepting help can be difficult because it can feel like a loss of autonomy, says Shanthi Gowrinathan, MD, a psychiatrist who specializes in psycho-oncology at St. John’s Cancer Institute in the Health Providence St. John’s Center in Santa Monica, California.
“With bladder cancer, especially if you have changes in your bodily function, it can be difficult for you to navigate social situations,” she says. “There is social stigma, shame, embarrassment and embarrassment. Because of this, people tend to withdraw and become more isolated. Unfortunately, this 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, Capizzi says. She found it challenging to accept the many offers from family, friends and colleagues to provide support, such as bringing food and walking her dogs.
“Most people want to be helpful, and they love it when you take them up on their offer because they want to be helpful,” she says. “You quickly learn who you can count on. But it’s up to you to do that.
Consider talking to a therapist
Although being open with friends and family can help ease the pressure that comes with having a bladder cancer diagnosistreatment and worry about relapse, talking to a trained therapist can give you more freedom to express all the anger, fear, frustration, and sadness that may be building up inside you, Howard says.
“My main advice to anyone with bladder cancer is to find a therapist,” he says. “Family means well and they have the best intentions when they’re willing to listen, but it’s hard to put all of that on your loved ones. As for me, I needed a safe place where I could cry and babble and just leave. Also, the therapist doesn’t just listen. They help you deal with what is happening and can help you create a plan that gives you a way forward.”
Specific mental health treatments have been shown to be effective in cancer patients, Torres-Mackey adds, such as cognitive behavioral therapy (CBT). A 2019 study in the journal Urological oncology found that CBT and other mental health interventions delivered both before and after bladder cancer treatment played an important role in health outcomes. Researchers note that depression and anxiety can increase rates of postoperative complications and affect long-term survival. 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 Telekamp, 32, was first diagnosed with cancer, there was debate among her doctors about what type the cancer might be. She was 28 at the time, and the average age at which bladder cancer is diagnosed is 73. About 90 percent of those diagnosed with the disease are over 55. In addition to being younger than most patients, Tellekamp did not have any of the major 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 than feared: Stage IV metastatic bladder cancer. A doctor told Telekamp’s wife and mother that it was doubtful she would make it to her next birthday, which was three months away. Thanks to immunotherapy, she made it through that birthday and a few more since, but now she feels like she’s in “extra innings.”
The confusion, terror and dramatic news of the first few months—combined with frustrating insurance issues—led Tellekamp to start a blog, even though she didn’t believe anyone would read it.
“It felt like you were screaming into the void,” she recalls. “But it was very cathartic from the start. I also thought that maybe there would be a chance to find other young people with bladder cancer, which is not usually the case in support groups. Not only did she find these connections, but she expanded her social media reach and began participating in a group chat of 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 alone,” Telekamp says. “Community becomes extremely important.” Deepening these friendships gives her 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 as well.
He mourns his loss
Tellekamp’s mother, who had thyroid cancer several years ago, was a major source of support through treatment. One piece of wisdom she shared that is especially meaningful is, “Let yourself grieve for what you won’t be again.”
This means that even if you go into remission or are declared cancer-free, you will never again be the person you were before cancer. That realization can feel like a punch in the gut, Tellekamp says. There can also be tension around wanting to stay positive and cheerful whenever possible. But Tellekamp believes that if you don’t acknowledge that your identity has changed, those feelings get stuck inside you instead of being released. It is important not to live in the darkness of deep loss for the previous version of yourself that you had to leave behind.
“Sometimes I set a timer for 15 minutes of grief and then cry and scream,” she says. “When the timer goes off, I get up and go to fold the laundry. You can’t stop living and living 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 out of place. But Howard notes that even the anxiety of a potential relapse can be beneficial, 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 go for it,” he says. This led to a part-time job as a prison chaplain, as well as getting tattoos that he had previously been hesitant to get, worried about what people would think. He also spends more time just being present and mindful, and basking in feelings of gratitude for how far he’s come.
“If I could go back in time, I wouldn’t change a thing, even if I got cancer,” he says. “It made me who I am and I’ve had 58 amazing years. I don’t know how many I have left, but I will be here, fully, for all of them.
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