AAlthough Mac Howard has spent the last 16 years without one Bladder cancer recurrence, he never really feels free. The 58-year-old Indiana resident is still checking his urine for traces of blood, and every time he celebrates another anniversary of his diagnosis, fear twists in his stomach.
“I always have that in the back of my mind,” he says. “Sometimes the fear was paralyzing and I know it affected my wife and three children. The bladder cancer recurrence rate is pretty high, and going on for so long doesn’t feel like success—it’s more like excitement. Will that be the month it comes back?”
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 with bladder cancer by the online patient community Health Union, 18% of those surveyed were diagnosed with depression and 16% with an anxiety disorder. About 60% said they were afraid of their cancer coming back, and 23% searched the terms “mental health and bladder cancer” online. Only about 38% said they felt emotionally supported during their cancer process.
“Bladder cancer can be very distressing because you often have to deal 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 Ohio State University’s Comprehensive Cancer Center. “There may also be changes in sleep quality or the need to quit smoking, as bladder cancer is strongly linked to smoking and everything can feel overwhelming.”
Luckily, there are some strategies that can be useful 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 more to do, such as: B. a secondary cancer, which can lead to feelings of helplessness.
In the Health Union survey, 30% of respondents were diagnosed with another cancer either before or after their bladder cancer diagnosis. And 87% reported other health problems such as high cholesterol, high blood pressure and arthritis.
A… have secondary cancerin particular, it can feel like bad news is always just around the corner, says Rebecca Capizzi, 52, of New Jersey, who was diagnosed with bladder cancer in October 2020 but has ovarian, thyroid and breast cancer before.
“It’s hard not to be in a fight-or-flight response all the time, especially when tests are coming up,” she says. “I get a scar in the pit of my stomach just thinking, what’s next? I’ve been through so much with surgeries and chemo, but it still feels like it’s never going to end.”
Because of this, Capizzi has focused on finding what helps her feel a greater sense of control over her body and mind: exercise, specifically walking. Even when she is on active treatment and only able to engage in minimal physical activity, she takes short walks because it is so beneficial to her mental health.
“Staying active is a great stress reliever for me,” says Capizzi. “When everything feels 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, clinical psychologist at Lenox Hill Hospital in New York, New York. There can often be a confusion of “sick” with “weak,” she says, and bladder cancer treatments may exacerbate that feeling. Incorporating more exercise could be a way to build an emotional sense of strength as well as the physical resilience needed for treatment, Torres-Mackie says.
Accept help from others
Even when friends and family are willing to provide help, accepting help can be difficult because it can feel like a loss of autonomy, says Dr. Shanthi Gowrinathan, a psycho-oncology psychiatrist at Saint John’s Cancer Institute at Providence Saint John’s Health Center in Santa Monica, California
“With bladder cancer, especially if you have changes in how you function, it can be difficult to navigate social situations,” she says. “There’s social stigma, shame, awkwardness and embarrassment. Because of this, people tend to withdraw and become more isolated. Unfortunately, it can make you feel even more demoralized.”
Helping others can counteract this feeling of isolation — as well as the idea of having 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 delivering food and walking their dogs.
“Most people want to be helpful, and they love it when their offer is accepted because they want to be useful,” she says. “You quickly learn who to lean on. But it’s up to you to lean in.”
Consider speaking to a therapist
However, being open with friends and family can help relieve the pressure that comes with the bladder cancer diagnosisTreatment and fear of recurrence, talking to a trained therapist can give you more freedom to express any anger, fear, frustration, and sadness that may be storing up inside you, says Howard.
“My number one piece of advice for anyone with bladder cancer is to see a therapist,” he says. “The family means well and has the best of intentions when they’re willing to listen, but it’s difficult to pin it all on to loved ones. For me I needed a safe place where I could cry and swear and just let go. Also, a therapist doesn’t just listen. They help you process what happened and they can help you create a plan that will show 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 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. Researchers found that depression and anxiety can increase postoperative complication rates and affect long-term survival rates. This means that therapy isn’t just about making you feel better emotionally now—it could have a profound impact on your physical health for years to come.
Connect with other patients
When Brittany Tellekamp, 32, who lives in Atlanta, was first diagnosed with cancer, there was debate among her doctors as to what type it might be. She was 28 at the time – and the median age for diagnosis of bladder cancer is 73. Approximately 90% of patients diagnosed with bladder cancer are over 55 years old. Aside from being younger than most patients, Tellekamp did not have the major risk factors associated with bladder cancer, such as: Smoking or regular contact with chemicals such as paints or solvents.
When doctors finally agreed on a diagnosis, the news was worse than she feared: metastatic stage IV bladder cancer. A doctor told Tellekamp’s husband and mother that it was doubtful she would make it to her next birthday, which is be three months away. She made it through that birthday and a few more since, thanks to immunotherapy, but now she feels like she’s in “extra innings.”
The confusion, terror and dramatic news of those first few months – coupled with frustrating insurance woes – prompted Tellekamp to start a blog, though she didn’t think anyone would read it.
“It felt like screaming into space,” she recalls. “But it was very cathartic from the start. Also, I thought maybe there would be a chance to 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 a group chat of people with metastatic cancer.
“When you know you’re not going to ring the bell that signals the end of your cancer treatment, you can feel really alone,” Tellekamp says. “Community becomes hugely 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 too.
Continue reading: The latest breakthroughs that could help bladder cancer patients
mourn your loss
Tellekamp’s mother, who was diagnosed with thyroid cancer a few years ago, has been a major source of support from the treatment. One piece of 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 be the person you were before you had cancer. That realization can feel like a punch in the gut, Tellekamp says. There can also be tension around the desire to stay positive and cheerful whenever possible. But Tellekamp believes that when you don’t acknowledge that your identity has changed, those feelings are locked in, rather than released. It’s important not to live in the darkness of profound loss for the earlier version of yourself that you had to leave behind.
“Sometimes I’ll set a timer for 15 minutes out of grief 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 live in your grief, but you can’t pretend it’s not there either. You have to respect the grieving process and find ways to let it out.”
When considering the impact of bladder cancer, the term “silver lining” may seem inappropriate. But Howard notes that even the fear of a possible recurrence can be beneficial depending on what you do with that energy.
“One thing cancer did for me was increase my understanding that if I want to do something, I should do it better,” he says. This led to working as a part-time prison chaplain and tattoos, which he had previously hesitated to do because he was worried about what people might think. He’s also taking more time to just be present and mindful, immersing himself in feelings of gratitude for how far he’s come.
“If I could turn back time, I wouldn’t change anything, not even get cancer,” he says. “It made me who I am and I had an amazing 58 years. I don’t know how many I have left, but I will be wholeheartedly there for all of them.”
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