AAlthough Mac Howard has spent the past 16 years without a recurrence of bladder cancer, he never really feels free. The 58-year-old Indiana resident still examines his urine for traces of blood, and every time he marks another anniversary of his diagnosis, there’s a fear in his stomach.
“It’s always in the back of my mind,” he says. “At times the fear was paralyzing, and I know my wife and three children have been affected by it. The recurrence rate for bladder cancer is quite high, and going for as long as I have doesn’t feel like success – it’s more like suspense. Will this 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 recurrence rate after five years is 50% to 70%.
According to a 2020 survey of nearly 600 people with bladder cancer conducted by the Health Union online patient community, 18% of respondents were diagnosed with depression and 16% with anxiety. About 60% said they experience anxiety about their cancer returning, and 23% searched online for the terms “mental health and bladder cancer”. Only about 38% reported feeling emotionally supported during their cancer process.
“Bladder cancer can be very stressful because you often have to deal with changes in body function and sometimes body image, as well as potential changes in sexual health,” says Dr. Shawn Dason, a urologic surgeon at Ohio State University Comprehensive Cancer Center. “There may also be shifts in sleep quality or the need to quit smoking, as bladder cancer is strongly linked to smoking, and it can all feel overwhelming.”
Fortunately, there are some strategies that can be helpful no matter where you are on your cancer journey.
Concentrate on what you can control
Coping with a bladder cancer diagnosis is hard enough, but it’s common for patients to have even more going on, such as 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 being diagnosed with bladder cancer. And 87% reported other health problems such as high cholesterol, hypertension and arthritis.
Have a… secondary cancerin particular, can make it feel like bad news is always just around the corner, says Rebecca Capizzi, 52, a New Jersey resident who was diagnosed with bladder cancer in October 2020 but has ovarian, thyroid, and breast cancer therefor.
“It’s hard not to be in a fight-or-flight response all the time, especially with tests coming up,” she says. “I have fear in my stomach when I think: what now? I’ve been through so much with surgeries and chemos, but it still feels like it will never end for me.”
That’s why Capizzi focused on finding what helps her feel a stronger sense of control over her body and mind: exercise, especially walking. Even when she is actively treated and can only do minimal physical activity, she takes short walks because it improves her mental health so much.
“Staying active is a huge stress reliever for me,” says Capizzi. “When everything feels like it’s too much, I know 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 can reinforce that feeling. Incorporating more exercise can be one way to build an emotional sense of strength, as well as the physical resilience needed for treatment, says Torres-Mackie.
Accept help from others
Even when friends and family are eager to offer help, it can be difficult to accept help because it can feel like a loss of autonomy, says Dr. Shanthi Gowrinathan, a psychiatrist who specializes in psycho-oncology at Saint John’s Cancer Institute at the Providence Saint John’s Health Center. in Santa Monica, California.
“With bladder cancer, especially when you have changes in your body function, it can be difficult to navigate social situations,” she says. “There is social stigma, shame, awkwardness and embarrassment. As a result, people tend to withdraw and become more isolated. Unfortunately, this can leave you feeling demoralized.”
Allowing others to lend a hand can counteract that sense of isolation, as well as the idea that you have to do everything yourself, says Capizzi. It has been 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 take them up on 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 lean.
Consider talking to a therapist
Although being open with friends and family can help relieve the pressure associated with the bladder cancer diagnosistreatment and fear of recurrence, talking to a trained therapist can give you more freedom to express all the anger, fear, frustration, and sadness that’s inside you, says Howard.
“My number one piece of advice to anyone with bladder cancer is to see a therapist,” he says. “Family means well, and they have the best of intentions if they’re willing to listen, but it’s hard to unload all this on your loved ones. For me, I needed a safe space where I could cry and rant and just let go. A therapist doesn’t just listen. They help you deal with what is happening, and they can help you make a plan that will give you a way forward.”
Specific mental health treatments have been proven to be effective for cancer patients, Torres-Mackie adds, such as cognitive behavioral therapy (CBT). A 2019 study in the journal Urological oncology found that CBT and other mental health interventions, both before and after bladder cancer treatment, played an important role in health outcomes. The researchers noted that depression and anxiety can increase postoperative complications and affect long-term survival rates. That means 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, there was debate among her doctors about what type it might be. She was 28 at the time – and the average age for bladder cancer diagnosis is 73. About 90% of those diagnosed with the condition are over 55 years old. In addition to being younger than most patients, Tellekamp had none of the major risk factors associated with bladder cancer, such as to smoke or regular exposure to chemicals such as paint or solvents.
When the doctors finally arrived at a diagnosis, the news was worse than she 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’s passed that birthday and a few more since, but she feels like she’s in “extra turns” now.
The confusion, terror, and dramatic news in those first few months—combined with frustrating insurance issues—led Tellekamp to start a blog, even though she didn’t think anyone would read it.
“It felt like I was screaming into the void,” she recalls. “But from the beginning it was very cathartic. Also, I thought there might be a chance I could find other young people with bladder cancer, which isn’t usually the case in support groups.” Not only did she find those connections, but she expanded her reach to social media and started to update. contribute to a group chat of people with metastatic cancer.
“Knowing you’re not going to ring that bell that signals the end of your cancer treatment can make you feel really alone,” says Tellekamp. “Community is going to be hugely important.” Deepening those friendships gives her a sense of control, she adds, as she feels like a patient advocate, helping others through feelings and situations that have also been challenging for her.
Mourn your loss
Tellekamp’s mother, who had thyroid cancer a few years ago, has been an important source of support through treatment. One piece of wisdom she shared that has been particularly meaningful is, “Let yourself grieve for who you will no longer be.”
That means that even if you go into remission or are declared cancer-free, you will never again be the person who existed before cancer. That realization can feel like a gut feeling, says Tellekamp. There may also be tension around the desire to stay positive and cheerful whenever possible. But Tellekamp believes that if you don’t acknowledge that your identity has shifted, those feelings settle in you instead of being released. It is important not to live in the darkness of deep loss to the previous version of yourself that you had to leave behind.
“Sometimes I set a timer for 15 minutes for sadness, 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 living in your grief, but you can’t pretend it isn’t there either. 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 fear of possible recurrence can be an advantage, depending on what you do with that energy.
“One thing cancer has done for me was sharpen the understanding that if I want to do something, I better get around to it,” he says. That led to a stint as a part-time prison preacher, and he also got tattoos that he had previously hesitated about, worried about what people would think. He also takes more time just to be present and attentive, and to indulge 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 get cancer,” he says. “It made me who I am, and I’ve had 58 great years. I don’t know how many I have left, but I will be here, fully, for all of them.”
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