AAlthough Mac Howard has spent the last 16 years without a bladder cancer recurrenceYou never feel truly free. The 58-year-old Indiana resident still studies his urine for traces of blood, and every time it marks another anniversary of his diagnosis, there’s a pang of fear in his stomach.
“It’s always in the back of my mind,” he says. “Sometimes the anxiety has been paralyzing, and I know my wife and three children have been affected by that. The recurrence rate for bladder cancer is quite high, and going on this long doesn’t feel like a success, it’s more like a hangover. Will this be the month I return?
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 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 feel anxiety about their cancer coming back, and 23% have searched for the terms “mental health and bladder cancer” online. Only about 38% reported feeling emotionally supported during their cancer journey.
“Bladder cancer can be very stressful because you are often faced with changes in body function and sometimes body image, as well as possible changes in sexual health,” says Dr. Shawn Dason, urologic surgeon at the Center Ohio State University Comprehensive Oncology. “There may also be changes in sleep quality or the need to quit smoking, as bladder cancer is strongly linked to smoking, and it can all be overwhelming.”
Fortunately, there are some strategies that can be helpful no matter where you are on your cancer journey.
Focus on what you can control
Dealing with a bladder cancer diagnosis is difficult 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 had been 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 seem like bad news is always just around the corner, says Rebecca Capizzi, a 52-year-old New Jersey resident who was diagnosed with bladder cancer in October 2020 but had bladder cancer. ovary, thyroid and breast cancer before.
“It’s hard not to have 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 a lot with surgeries and chemotherapy, but I still feel like this will never end for me.”
That’s why Capizzi has focused on finding what helps her feel a greater 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 greatly improves her mental health.
“Staying active is a great stress reliever for me,” says Capizzi. “When I feel like it’s all too much, I know I can move my body and that makes all the 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 mix of “sick” with “weak,” she says, and bladder cancer treatments can heighten that feeling. Incorporating more exercise could be one way to build an emotional sense of strength, as well as the physical resilience needed for treatment, she says Torres-Mackie.
Read more: Why pelvic floor rehabilitation is key for patients with bladder cancer
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 Dr. Shanthi Gowrinathan, a psychiatrist specializing in psycho-oncology at Saint John’s Cancer Institute at the Center for Providence Saint John Health. in Santa Monica, California
“With bladder cancer, especially if you have changes in your bodily function, you may have a hard time navigating social situations,” she says. “There is social stigma, shame, discomfort and embarrassment. Because of this, people tend to withdraw and isolate themselves more. Unfortunately, that can make you feel more demoralized.”
Allowing others to lend a helping hand can counter those feelings of isolation, as well as the idea that you have to do everything yourself, Capizzi says. It was a challenge 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 it when you accept their offer because they want to be helpful,” she says. “You quickly learn who you can lean on. But it’s up to you to make the incline.
Consider talking to a therapist
Although being open with friends and family can help relieve the pressure that comes with the bladder cancer diagnosistreatment and anxiety about recurrence, 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 of you, Howard says.
“My main advice for anyone with bladder cancer is to find a therapist,” he says. “Family mean well, and they mean the best when they’re willing to listen, but it’s hard to take all of this out 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 figure out what’s going on and can help you create a plan that gives you a way forward.”
Specific mental health treatments have been shown to be effective for cancer patients, Torres-Mackie adds, such as cognitive behavioral therapy (CBT). A 2019 study in the journal. Urologic Oncology found that CBT and other mental health interventions performed both before and after bladder cancer treatment played an important role in health outcomes. The researchers noted that depression and anxiety can increase rates of post-surgical complications and affect long-term survival rates. That means therapy isn’t just about helping you feel better emotionally right now, but could have a profound effect on your physical health for years to come.
Connect with other patients
When Brittany Tellekamp, 32, of Atlanta, was first diagnosed with cancer, there was debate among her doctors about what type it could be. At the time, she was 28 years old, and the average age for diagnosis of bladder cancer is 73. About 90% of people diagnosed with the condition are over the age of 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 of smoking or regular exposure to chemicals such as paint or solvents.
When doctors finally made a diagnosis, the news was worse than he had feared: stage IV metastatic 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 made it through that birthday and a couple more since, but now she feels like she’s on “extra tickets.”
The confusion, terror, and dramatic news of those first few months, along with frustrating insurance problems, led Tellekamp to start a blog, even though he thought no one would read it.
“It was like screaming into the void,” he recalls. “But it was very cathartic from the beginning. Also, I thought maybe there would be a chance to meet other young people with bladder cancer, which tends not to be the case in support groups.” He not only found those connections, but he extended his reach to social media and began contributing to 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, it can feel really lonely,” Tellekamp says. “The community becomes very important.” Deepening those friendships gives her a sense of control, she adds, because she feels like a patient advocate, helping others work through feelings and situations that have also been challenging for her.
Read more: The latest advances that could help patients with bladder cancer
hurt your loss
Tellekamp’s mother, who suffered from thyroid cancer a few years ago, has been an important source of support during treatment. One piece of wisdom she shared that has been particularly meaningful is: “Allow yourself to grieve for what you will never be again.”
That means that even if you go into remission or are declared cancer-free, you will never be the person you were before cancer. Realizing that can feel like a punch in the stomach, Tellekamp says. There may also be tension around wanting to stay positive and cheerful whenever possible. But Tellekamp believes that if you don’t recognize that your identity has changed, those feelings are lodged within you, instead of being released. It is important not to live in the darkness of the profound loss of the old version of yourself that you had to leave behind.
“Sometimes, I’ll set a 15-minute timer for the pain, and then I’ll cry and scream,” she says. “When the timer goes off, I get up and go fold the laundry. You can’t stop living and living in your pain, but you also can’t pretend it’s not there. You have to respect the grieving process and find ways to let it out.”
To take action
When considering the effects of bladder cancer, the term “silver side” may seem incongruous. But Howard points out that even anxiety about a possible recurrence can be a benefit, depending on what you do with that energy.
“One thing cancer did for me was sharpen the realization that if there’s something I want to do, I better do it,” he says. That led to a stint as a part-time prison chaplain, as well as getting tattoos that he had previously hesitated about, worried about what people might think. He also takes more time to simply be present and mindful, and to soak in feelings of gratitude for how far he’s come.
“If I could go back in time, I wouldn’t change a thing, not even having cancer,” he says. “He has made me who I am, and I have had an incredible 58 years. I don’t know how many I have left, but I will be here, fully, for all of them.”
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