AAlthough Mac Howard has gone the last 16 years without a recurrence of bladder cancer, he never really feels free. The 58-year-old Indiana resident is still studying 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 said. “Sometimes the anxiety has been crippling, and I know my wife and three children have been affected by it. The recurrence rate of bladder cancer is quite high, and will continue as long as I don’t have the feeling like a hit – it’s more of a suspenseful one. Will this be the month he 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 with bladder cancer by the online patient community Health Union, 18% of respondents were diagnosed with depression and 16% with anxiety. About 60% said they felt anxious about their cancer coming back, and 23% searched for the terms “mental health and bladder cancer” online. Only about 38% said they felt emotionally supported throughout 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 Dason , a urological surgeon at the Ohio State University Comprehensive Cancer Center. “There may also be changes in sleep quality or a need to quit smoking, as bladder cancer is strongly linked to smoking, and all of that can feel 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
Coping with a diagnosis of bladder cancer is hard enough, but it’s common for patients to suffer even more from it, such as a second 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 diagnosis of bladder cancer. And 87% reported other health issues like high cholesterol, hypertension, and arthritis.
Having a second cancer, in particular, can make it feel like bad news is always around the corner, says Rebecca Capizzi, 52, a New Jersey resident who was diagnosed with bladder cancer in October 2020. , but who had ovarian, thyroid and breast cancer. before that.
“It’s hard not to be in a fight-or-flight reaction all the time, especially when I have tests coming up,” she says. “I have fear in the pit of my stomach just thinking, what’s next? I’ve been through so much with surgeries and chemo already, but I still feel like it’s not 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 is on active treatment 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 it all feels like 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, adds Naomi Torres-Mackie, a clinical psychologist at Lenox Hill Hospital in New York, New York. There can often be confusion between “sick” and “weak,” she says, and bladder cancer treatments can make that feeling worse. Incorporating more exercise could be a way to build a sense of emotional strength as well as the physical resilience needed for treatment, Torres-Mackie says.
Read more: Why pelvic floor retraining is essential 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, says Dr Shanthi Gowrinathan, a psychiatrist specializing in psycho- oncology at the Saint John’s Cancer Institute at Providence Saint John’s Health Centre. in Santa Monica, California.
“With bladder cancer, especially if 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. Because of this, people tend to withdraw and isolate themselves more. Unfortunately, this can demoralize you further.
Allowing others to lend a hand can counter those feelings of isolation, as well as the idea that you have to do everything yourself, Capizzi says. It was difficult for her to accept the many offers from family, friends and co-workers to provide support, such as providing 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 lean.
Consider talking with a therapist
While being open with your friends and family can help relieve the pressure that comes with bladder cancer diagnosis, treatment, and anxiety, talking with a trained therapist can give you more freedom to express any the anger, fear, frustration and sadness that can be layered inside of you, says Howard.
“My best advice to anyone with bladder cancer is to see a therapist,” he says. “Family means well, and they have the best intentions when they’re willing to listen, but it’s hard to unload it all on your loved ones. For me, I needed a safe space where I could cry and rant and just letting go. Plus, a therapist doesn’t just listen. They help you understand what’s going on and they can help you create a plan that gives you a path to follow.
Specific mental health treatments have proven 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 performed both before and after bladder cancer treatment played an important role in health outcomes. The researchers noted that depression and anxiety can increase post-surgical complication rates and affect long-term survival rates. This 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 32-year-old Atlanta resident Brittany Tellekamp was first diagnosed with cancer, her doctors debated her type. She was 28 at the time, and the average age of bladder cancer diagnosis is 73. About 90% of those diagnosed are over the age of 55. Besides being younger than most patients, Tellekamp had none of the major risk factors associated with bladder cancer, such as smoking or regular exposure to chemicals like paint or solvents.
When doctors finally made a diagnosis, the news was worse than she feared: stage IV metastatic bladder cancer. A doctor told Tellekamp’s husband and mother that she was unlikely to attend her next birthday, which was three months away. Thanks to immunotherapy, she’s passed that birthday and a few others since, but she feels like she’s in “extra innings” now.
The confusion, terror, and dramatic news of those first few months, coupled with frustrating insurance issues, led Tellekamp to start a blog, even though she thought no one would read it.
“It was like screaming into the void,” she recalls. “But it was very cathartic from the start. Also, I thought there might be a chance that I would find other young people with bladder cancer, which is not usually not the case in support groups.Not only did she find these connections, but she expanded her reach on social media and started contributing to a group discussion 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 lonely,” Tellekamp says. “Community becomes extremely important.” Deepening these 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 difficult for her.
Read more: The latest advances that could help bladder cancer patients
Grieve your loss
Tellekamp’s mother, who had thyroid cancer a few years ago, was a major source of support throughout treatment. One wisdom she shared that was particularly meaningful is, “Let yourself grieve for who you will no longer be.”
This means that even if you go into remission or are declared cancer free, you will never again be the person who existed before cancer. This realization can feel like a punch, Tellekamp says. There can also be tension around wanting to stay positive and cheerful as much as possible. But Tellekamp thinks that if you don’t acknowledge that your identity has changed, those feelings lodge within you instead of being released. It’s important not to live in the darkness of a deep loss for the old version of yourself that 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 rings, I get up and go to fold the laundry. You can’t stop living and living in your grief, but neither can you pretend it’s not there. You need 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 about a possible recurrence can be an advantage, depending on what you do with that energy.
“One thing that cancer has given me has been to sharpen the understanding that if there’s something I want to do, I better get on with it,” he says. This led to a stint as a part-time prison chaplain, as well as tattoos he had previously faltered on, worried about what people might think. It also takes more time to just be present and mindful, and to soak up feelings of gratitude for how far you’ve come.
“If I could go back in time, I wouldn’t change anything, not even 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’m going to be there, fully, for each one of them.
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