Care delays took physical, mental toll on patients

MANKATO, Minn. (AP) — Larry Ballman anxiously watched the cancer on the right side of his face and neck spread from late March into the first weeks of April.

A lump of squamous cell carcinoma went from about half the size of a golf ball to an egg within a week, he said, and his discomfort grew with it.

“You’ve got cancer growing — and I’ve had cancer before — and you don’t sleep,” he told the Mankato Free Press. “You wonder what in the hell it’s going to be like in two weeks.”

All of it was happening in the aftermath of the state’s late-March halt on elective procedures in clinics and hospitals, a response to the COVID-19 pandemic. The Cleveland, Minnesota, man’s case was more emergent than elective, but delays associated with the state’s order pushed his surgery back by weeks.

Facing a tougher recovery because of it, Ballman said he feels like state leaders were calling the shots on his medical care despite his doctors pushing to move forward.

And the scars on his face, which he called “uglier than the devil,” will serve as maddening reminders of the ordeal. He needed more than 100 stitches after surgery.

“At first the surgery should’ve taken three hours,” he said. “Instead it was an eight-hour procedure.”

In contrast to the outwardly visible and physical nature of Ballman’s cancer, Lisa Carlson’s experience waiting for her breast cancer surgery was more about the mental toll. She also had to wait weeks, saying it was scary walking out of her appointment with her care team in Mankato on March 20 not knowing when she’d receive surgery.

“It kind of takes your breath away,” she said. “As a person who had a new cancer diagnosis and type A personality, as soon I knew I had it, I wanted it out. I wanted it gone.”

Her surgeon, Dr. Tara Krosch of Mayo Clinic Health System in Mankato, said not knowing when the surgery could proceed is a hard position to be in as a doctor.

“There’s nothing worse to hear than you have breast cancer,” she said. “But now we had to say, ‘Wait, and there’s nothing we can do about it.’”

Carlson was more sad than angry at the time, but acknowledged it might be different if her cancer had spread to her lymph nodes. A couple of weeks after her surgery, she said she recognizes the tough situation both her doctors and state leaders were trying to work through.

Gov. Tim Walz’s executive order suspending elective procedures forced hospitals and clinics to quickly reshuffle appointments. Elective procedures ceased entirely, while many more pressing operations such as Ballman’s and Carlson’s were delayed.

The order was an unprecedented precaution against an unprecedented problem. Delaying care was partly about stocking up on personal protective equipment in case COVID-19’s peak hit the state.

“If we did elective surgeries, we would not have gowns and PPE in place,” Walz said in late April. “In the four weeks you’ve given us, we’ve built up our supplies.”

Doctors raised more concerns about delayed care as the order dragged on into early May. Elective care will resume as soon as May 11, but the backlog in cases could take a while to get through.

Resuming all procedures soon also won’t change the fact Ballman and other patients face harder recoveries. His surgeon, Dr. Brett Baldwin of Mankato Clinic, said he felt as if his hands were tied.

“That upstaged him from a stage 2 cancer to a stage 4 cancer due to that delay,” he said. ”It’s fairly uncommon for things to grow that fast, of course, but he was in that unlucky time and place.”

The clock on Ballman’s care delay began March 18, when his medical team explained he’d need a neck dissection to remove the cancer from his right neck and lymph nodes. The order to delay elective procedures took effect March 23.

His care team recognized his surgery shouldn’t be delayed based on guidelines from the American College of Surgeons. The surgery was initially set for April 3, but scheduling difficulties related to what procedures were prioritized pushed it back to April 17, Baldwin said.

Now post-operation, Ballman could need ongoing treatments such as chemotherapy and radiation instead of just the surgery followed by radiation. While Ballman said the swelling and pain from so many stitches have at least gone down in the weeks since, he still thinks it’ll be a while before life returns to normal.

The delayed situation was something Baldwin never thought he’d face in health care.

“I feel like the autonomy of patients is compromised as well as autonomy as a provider of these patients,” he said. “We put our patients’ care and treatment at the forefront of anything we do, and having the diagnosis and ability to treat this patient but being told by regulations that we can’t is frustrating.”

Ballman wasn’t his only patient whose care was delayed. The surgeon said he understands why the order happened but is glad it’s being lifted because it’ll get more people the care they need.

Carlson, meanwhile, said she’s relatively fortunate to have caught her cancer so early and avoided post-op chemotherapy. She also began an oral medication while waiting for surgery, which Krosch said might not have been possible if the cancer were more aggressive.

Under normal circumstances, she would’ve had her operation in late March or early April. It ended up happening on April 23.

“We’re hoping it’s a once-in-a-lifetime thing,” Krosch said of the care delays. ”It’s nothing any of us would prefer to see again.”

Krosch’s patients usually receive their operations within a couple of weeks. The anxiety associated with waiting is a huge reason why.

Carlson, of Fairmont but a patient at Mayo in Mankato, certainly felt the anxiety. “You kind of feel like a loss of control. It’s a little scary.”

Having her whole family shelter in place — her daughter is home from college and her son is home from high school — helped, as did Krosch’s frequent updates.

Martin County has among the most COVID-19 cases per capita in the state, so they’re taking the stay-home order seriously. Carlson said she’s basically only left the house for her medical appointments since March.

Her treatment will continue with oral medication for the next five to 10 years along with monthly injections to offset the medication’s side effects. She considers herself lucky and encourages people to be proactive about their health.

Like so many others whose lives have been impacted by COVID-19, she does also feel a bit angry these days. Not at anyone specifically, more so at how this life-altering pandemic put people in unheard of positions without any precedents to fall back on.

The pandemic is why her son’s graduation ceremony — which she so looked forward to during her wait — isn’t likely to happen.

And it’s why she shed so many tears while waiting for her cancer to be removed.

“Is there anger? Yes,” she said. “But it’s anger about why did that have to happen when I’m going through something so difficult.”