Neuroendocrine carcinoma patient balances work and treatment

Monique Govan has stopped asking “why.”

Why is she the one to be diagnosed with a rare cancer in the lungs – a cancer that accounts for only 1% to 2% of all lung cancer cases? Why, when she doesn’t smoke and is only 47 years old?

There are no answers down that line of thought.

“I have learned that I was the chosen one, and I'm not going to question anymore as to why this has happened to me,” she said. “It’s time to get it done, and it’s time to fight it.”

She draws strength for that fight from the loving support of family, friends and co-workers.

“I don’t know where this road is going to lead, but I do know that God is giving me strength and mental fortitude to fight this battle. God has also blessed me with a strong support system. From my husband to my children to my mom to my brothers, family, friends – I couldn't ask for a better group of people,” she said.

And, she added, “I do have my good moments. I do have my bad moments. But I will say, my bad moments are not as bad as in the beginning.”

An atypical cancer with an atypical presentation

Typically, one would expect symptoms of lung cancer to include a cough that won’t go away, shortness of breath or chest pain.

Govan had none of that.

Govan is now a perioperative-procedural team coordinator at MUSC Health Orangeburg, but when she first began having problems at the beginning of the year, she was a circulating nurse in the operating room. One of the circulating nurse’s duties is to document the surgery, including when the patient is brought into the operating room and when the surgery starts.

Except that Govan was having trouble seeing the clock.

 

She figured it was time for new glasses and went to her eye doctor, who updated her prescription. When that didn’t help, she returned, and he updated her prescription again. When that still didn’t help, he told her she needed to see a retina specialist.

By that point, it was becoming obvious just how much her vision had deteriorated.

“I didn't realize how bad it was until I was trying to read the chart,” she said. “When I covered my right eye, I could not see anything. If somebody was waving a hand, I could tell that there was a shadow. But I couldn’t make out any kind of – anything. No faces. No letters. No numbers. Nothing.”

Yet the retina specialist, John Kerrison, M.D., found nothing wrong with her eyes. Instead, he said she should have an MRI scan.

That scan revealed a pituitary tumor – assumed at that time to be benign – pressing against her optic nerve.

Kerrison immediately texted MUSC Health neurosurgeon William Vandergrift, M.D., who specializes in pituitary and other skull base tumors. Vandergrift’s team got Govan in for a visit within a few days and from there rearranged his schedule so that she could have surgery the following week.

Once Vandergrift started operating, “he did not like how the tumor looked or felt,” Govan said. “And that prompted him to order a CT of my chest, abdomen and pelvis for that night.”

The CT scan revealed the root of the problem.

“That's when I found out that I had a growth on my lung, and I had some lesions on my right hip bone. So I got a consult with pulmonology. I got a consult with oncology. And, of course, I know what that means because I'm a nurse.”

Govan spent Easter in the hospital. After being released on Easter Monday, she underwent additional outpatient tests, which showed that she also had spots on her liver and left shoulder blade.

She was diagnosed with atypical neuroendocrine carcinoma, a fast-growing cancer of neuroendocrine cells.

Because neuroendocrine cells are present in many organs, neuroendocrine carcinomas can develop throughout the body, though the most common location is the gastrointestinal tract. Govan’s cancer began in the lungs, the next-most common area for this type of cancer.

Creating a treatment plan

Govan was now under the care of MUSC Hollings Cancer Center oncologist Mariam Alexander, M.D., Ph.D., who specializes in lung cancer.

When it comes to treating rare cancers, doctors must often extrapolate from what is known about more common cancers. Because there are so few people with each rare cancer, it’s hard to organize clinical trials that can enroll enough people to produce meaningful results.

Instead, doctors share reports on what they’ve done or datasets they’ve collected. As an academic physician at Hollings, the state’s only National Cancer Institute-designated cancer center, Alexander keeps up with the latest research and regularly attends conferences to exchange knowledge with physicians from across the country.

For Govan, Alexander followed an aggressive treatment plan modeled after the treatment for small cell lung cancer, another type of fast-growing lung cancer.

Govan underwent radiation therapy for the spots on her hip and shoulder as well as some remaining cancer on the pituitary gland. She also had six cycles of chemotherapy every 21 days.

 

The chemotherapy was rough, she said.

“I lost all my hair. Always chronically fatigued. I had the dark spots on my tongue. I got the changes in my skin, a little bit of nausea, a little bit of vomiting,” she said. Though, she added, the nausea and vomiting weren’t as bad as that endured by people years ago.

Initially, the treatment showed that the spots were shrinking. But a scan in September revealed that one of the tumors that had been shrinking had started to grow again.

Alexander decided to have Govan begin treatment with tarlatamab, a type of immunotherapy that received Food and Drug Administration approval last year for small cell lung cancer that isn’t responding to chemotherapy.

Tarlatamab has shown very good results for some patients, and, in general, side effects with immunotherapies are less than those from chemotherapies. But that doesn’t mean there are no side effects. Patients are hospitalized for the first two infusions of tarlatamab because of the possibility of side effects like cytokine release syndrome, when the body’s immune system goes into overdrive.

Govan has now had the first two infusions of the new treatment, requiring hospitalization. The first treatment, in particular, was difficult. The second wasn’t as difficult, but she dealt with overwhelming fatigue that kept her in bed all weekend.

Despite that, Govan was back at work on Monday. Though Govan initially took some leave, she returned to work in July, with intermittent FMLA provisions, and even received a promotion in August.

Leaning on family to get through cancer

Govan has a long road ahead – she'll say that herself.

But Alexander sees a willpower and tenacity in Govan that says she’s not going anywhere anytime soon.

Govan appreciates the steadfast support of family.

 

“They have been my rocks,” she said. “I have a partially disabled husband, so my mom has taken the reins when he can't take me to Charleston. She took me back and forth every day. When I had those 10 days of radiation for five days a week – five one week, five the next – she brought me to Charleston every day.”

Govan has certainly had her down moments. She was scared. And then she had to tell her children about her diagnosis. But she’s decided to focus on the positive.

“You can’t get well when you’re sulking. You have to change your mindset. Even if it’s bad, you have to, in some kind of way, change your mindset because distress is going to affect how you feel,” she said. “So you have to try to stay as positive as you can.”

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