Living in limbo: The ’emotional roller coaster’ of a cancer diagnosis

SALT LAKE CITY — Luke Grover knew something was wrong when he started coughing up blood.

For a year, he’d had a cough and thought it was long COVID; even after he coughed up blood, doctors told him it was pneumonia. Six months later, he still coughed —- and the doctors told him it was left over from pneumonia and previous COVID diagnoses.

Then he started losing his breath.

Convinced that there was something besides pneumonia that might be affecting him, Grover went to a lung specialist in Idaho Falls, who performed a bronchoscopy on Aug. 30, 2022.

A few weeks later, on Sept. 6, he was diagnosed with nonsmoker lung cancer. His doctor gave him the option to get treated in Idaho or to go to Huntsman Cancer Institute in Salt Lake City. Grover instantly chose Huntsman, noting how its reputation impressed him. He had an appointment there a few weeks later.

“It was Oct. 6 that they called me and they said, ‘You have stage IV, inoperable, incurable (cancer),'” Grover said. “‘You have basically eight months to two years to live.'”

‘Emotional roller coaster’

“It is an emotional roller coaster for every patient,” said Dr. Sachin Apte, chief clinical officer at the Huntsman Cancer Institute. “There are ups and downs just in terms of arriving at the diagnosis. I mean, patients may come thinking they have one problem, and they’re told a different problem.”

Despite the gloomy prospects, Huntsman doctors performed several operations on Grover — and on Jan. 19, after another bronchoscopy, they told him that there was no cancer in his left lung.

“The emotional roller coaster that I’d gone from ‘You have pneumonia,’ to lung cancer, ‘It’s not that bad, get a procedure’ — to stage IV, ‘You’re going to die,” Grover said. “From Oct. 6 to Jan. 19, I really did live in limbo.”

The different diagnoses led to some emotional distress, but Grover noted how, no matter the situation, the doctors’ work protected him from the ever-evolving cancer.

“The truth for me is that I have absolutely loved the doctors, and I truly attest them to saving my life,” Grover said. “Yeah, it can be hard, it can be confusing, and they absolutely are doing the very best they can.”

In fact, Apte noted that several different cancers can appear as other diseases, making it difficult for some healthcare providers to pinpoint a diagnosis right away.

“Getting to the right diagnosis is not always easy as it sounds,” Apte said. “There are many medical conditions that masquerade as something else. And it’s only after some diagnostics and testing and thought does the real diagnosis show up; cancers can kind of fool you in that way.”

Self-advocacy with breast cancer

Grover isn’t the only one who has had a roller coaster of a healing journey. In fact, getting diagnoses of breast cancer specifically has proven a difficult journey for Eliza Little and Rebecca Cressman.

Little, a breast cancer survivor and head of Utah County’s Young Survivor Coalition, said that younger women commonly get misdiagnosed or have their concerns put on a shelf.

When Little saw a lump on her left breast, her gynecologist told her that while it was unusual, she wasn’t in a risk group for breast cancer, so they would simply watch it and see how it progressed with her menstrual cycle.

She still didn’t feel good about it — so she scheduled a few appointments and finally got a biopsy to determine that the lump was cancerous.

“If you don’t feel comfortable with something a doctor wants you to do, push back or find another doctor,” Little said. “Because if I had just sat there and waited, or let the doctor watch it, I don’t know what would’ve happened.”

Apte noted that, as a doctor himself, he encourages his patients to get multiple opinions if they’re not satisfied with the original answer.

“It’s a right, and frankly, a responsibility for a patient to advocate for themselves until they feel like they have gotten a satisfactory answer,” Apte said.

Lisa Gauchay, a licensed clinical social worker at the Huntsman Cancer Institute, noted that breast cancer frequently gets dismissed in younger patients.

“It happens so much in the young survivor community where it’s discounted as something else — ‘Oh, it’s part of your cycle, it’s this, it’s that.’ I think that it’s a lot of stigma, just as my doctor said, ‘You’re not part of the risk group, we’ll just watch it,'” Little said. “That happens so many times, and that’s where it takes the medical community, and also the women themselves reeducating and advocating and knowing that this can happen to young people.”

Getting educated

And Little isn’t the only woman bringing awareness to breast cancer prevention — Cressman, a radio host on FM 100.3, used her diagnosis as an opportunity to educate others about the issue.

The radio host received her breast cancer diagnosis after a mammogram screening, a key medical service that helped save her life.

“We went on air, partnered with the Utah Department of Health, and shared more information about free mammogram screenings,” Cressman said. “We used my experience to underscore, ‘Hey girls, we have one of the lowest mammogram rates in the country in Utah,’ and you’ve got to do it because you want to catch this early. The earlier you catch it, the happier outcome, and the less treatment you need.”

Gauchay also noted that “it’s always better to speak up” whenever a patient has a concern — and if they’re concerned about advocating for themselves, they can have a good friend accompany them during any appointments or biopsies.

Despite the emotional drains from diagnoses and the healing journey, the Huntsman Cancer Institute works to provide the best kinds of psychological care, including licensed clinical social workers, counselors and therapists to the patients and their families, according to Heather Simonsen, the institute’s manager of public affairs.

And in the meantime, Apte noted that cancer research is constantly changing and evolving for the better.

“I’m very hopeful that over the next years and decades to come, we’ll have more and more screening tests to find cancers earlier, at a much more treatable and curable state,” Apte said.