James and Lavonia Waddington heard the news about former President Joe Biden’s prostate cancer diagnosis through their 19-year-old daughter. She texted the family group chat after seeing the announcement on social media.
“Cancer touches us all. Like so many of you, Jill and I have learned that we are strongest in the broken places. Thank you for lifting us up with love and support,” Biden, 82, posted on May 19.
The news hit close to home for James Waddington, who was diagnosed with prostate cancer in 2020. Four months after his diagnosis, he said, he had surgery to remove the cancer and his prostate and he hasn’t had any issues since.
With all cancers, early detection is key. And if it wasn’t for his wife, Waddington said, “I’m quite sure that the diagnosis probably would not have been caught early.”
More: Biden has an aggressive form of prostate cancer. Should it have been caught earlier?
“She literally made me make an appointment when I wasn’t feeling well,” he said. “And she sat in the doctor’s office with me.”
Cancer patients rarely face a diagnosis alone, and there are approximately 6 million people providing care to those with cancer in the U.S., according to the Cancer Support Community Cancer Experience Registry. Whether it’s a spouse, a child, a sibling or a friend, caregivers are key to a patient’s cancer journey and outcomes are worse for patients without caregivers, said Dr. Arif Kamal, chief patient officer for the American Cancer Society. While much of the conversation following Biden’s diagnosis has been focused on the former president, families who have been through a similar diagnosis know the cancer will impact the rest of his family, too.
Sometimes, experts say, family caregivers step into a caregiving role before they even realize it.
More: Chronic illness can be hard on marriage. Studies show it’s worse when the wife is sick.
Lavonia Waddington had noticed little changes in her husband before she urged him to see a doctor.
“He was tired all the time,” she said. “He would come home from work and, kind of, fall asleep on the couch.”
She also noticed James Waddington commenting that he was thirsty more often. She suspected it could be diabetes. When he wouldn’t make an appointment himself, she said she made her own annual doctor’s appointment and scheduled his for the same day.
It was during one of James Waddington’s follow-up appointments regarding his diabetes diagnosis that his doctor noticed his prostate-specific antigen levels were high and Waddington was later diagnosed with prostate cancer.
“Sometimes, your partner may irritate you or get on your nerves with the persistence of making sure you take care of yourself,” he said. “But sometimes we are negligent to take care of ourselves.”
Sometimes symptoms might seem benign, Kamal said, and “there’s a hesitancy to get screened because there’s so much anxiety about what could be the result.” That’s where family caregivers can step in and encourage those they loved to see a doctor.
Family caregivers for cancer patients can feel ‘constant worry’
Once a cancer diagnosis is made, family caregivers can step into a world of “constant worry,” Kamal said.
He hears from caregivers often who say things like, “Every time he coughs, my heart stops.”
“The concern is, ‘Well, what if the prostate cancer went to the lungs?'” Kamal said. That’s not a common progression, he said, but caregivers often become “very astute to things that may concern them that something is getting worse.”
Most caregivers aren’t prepared to handle the stress and fatigue that comes with caregiving, said Sally Werner, chief executive officer for the Cancer Support Community.
“They are definitely going to be thinking about the patient’s medical condition and trying to study up as fast as they can to be the best advocate that they can,” Werner said. “And a lot of caregivers eventually have some of their own healthcare issues, just because of the burden and the stress.”
According to the Cancer Experience Registry, a Cancer Support Community survey, 34% of caregivers reported depression worse than the national average, 49% reported substantially worse anxiety than the national average and 39% said their health was somewhat or much worse than before they began their caregiving role.
A recent report from Cleo, a global family care platform, found 60% of parents and caregivers surveyed were at higher risk for depression and anxiety and more than half of adult caregivers and those in the sandwich generation were at risk of burnout. Those rates increased among caregivers supporting a loved one with a chronic condition, a cancer diagnosis and those navigating an end-of-life journey.
More: ‘I don’t know where to start.’ Parents and caregivers are burned out. Who’s most at risk?
Navigating terminal illness like some cancers is tricky, and success for doctors and patients might look different than success for caregivers, Kamal said. Oncologists typically think advanced cancer treatment is successful if the cancer isn’t growing, while caregivers might want or expect the cancer to shrink or go away entirely.
Family caregivers are the ones responding most regularly to the patient’s symptoms and side effects from treatments, including urinary and bowel incontinence and reduced energy levels in some prostate cancer patients. For a patient like Biden, where the cancer has metastasized to the bones, caregivers need to look out for bone fracture risks.
Those added responsibilities can be a lot for caregivers, even if their loved one is feeling comfortable and the cancer is not progressing. Caregivers are also often at the forefront of their loved one’s treatment plan, trying to stay up to date with myriad data points and strategies.
“I think all of that can cause quite a bit of stress for caregivers,” Kamal said.
‘Health is more important than politics.’
In some ways, Kamal said, families who have dealt with cancer before might have an easier time handling the news of another diagnosis. The Bidens lost their son, Beau, to a brain tumor in 2015. But “a brain tumor and prostate cancer couldn’t really be any more different,” Kamal said, likening a brain tumor to a sprint and prostate cancer to a marathon since patients with prostate cancer often live several years after being diagnosed.
Whenever public figures like Biden spread awareness about their own cancer journeys, Werner said, it helps encourage others to get screened and to urge their loved ones to get screened, too.
Biden’s diagnosis was a wakeup call for the Waddington family, too. Lavonia Waddington said Biden’s story reminded her son that he needs to get tested sooner than normally recommended since his father had prostate cancer.
More: How is prostate cancer diagnosed and treated? Understanding Joe Biden’s illness.
James Waddington said he hopes more men, especially African American men, start talking about early screening, regardless of political affiliation. He hopes Biden’s news “pushes at least a few of them to go get checked.”
“Health is more important than politics,” he said.
Madeline Mitchell’s role covering women and the caregiving economy at USA TODAY is supported by a partnership withPivotal Ventures andJournalism Funding Partners. Funders do not provide editorial input. Reach Madeline at memitchell@usatoday.com and @maddiemitch_ on X.
This article originally appeared on USA TODAY: Caregivers play key role in cancer diagnoses like Biden’s
