Young uterine cancer patient reflects on journey

Lakisha Mack has often found herself wondering why she, at only 46 years old, would be diagnosed with a rare and aggressive form of uterine cancer.

It’s not a question that her doctors and nurses can answer. Instead, their answer to her has been to stand by her side with compassion and expert care for the past four years.

“It was rough and bumpy and scary,” Mack said. “But as I went through it, I went through it with them. I went through it with MUSC. I went through it with my mom, my family and, first and foremost, God.”

Seeking diagnosis

One of the frustrations of diagnosing gynecologic cancers is that the symptoms are often vague. For example, bloating can be a symptom of ovarian cancer, though most of the time, bloating is caused by something else.

“It was rough and bumpy and scary. But as I went through it, I went through it with them. I went through it with MUSC. I went through it with my mom, my family and, first and foremost, God.”

Lakisha Mack

Abnormal vaginal bleeding, abnormal discharge or post-menopausal bleeding are the most common symptoms of uterine cancer. But what is abnormal, especially for a woman who hasn’t yet gone through menopause?

For Mack, it was excessive amounts of bleeding, to the point that she would wear only dark-colored pants and was even nervous to sit on other people’s couches.

Taylor Orellana, M.D., a gynecologic oncologist at MUSC Hollings Cancer Center who manages Mack’s ongoing follow-up care, said that “abnormal” includes excessive bleeding and irregular cycles.

Besides that, Mack was in discomfort.

“I had pains. I felt fatigue. I just felt drained,” she said.

She sought help at another hospital and was told it was simply an irregular period and given prescription-strength Motrin. But that didn’t seem right. She started talking to people and searching on the internet; the answer that kept popping up on the internet was “cancer.” She decided to make another appointment, this time with gynecologist Lauren Meeks Brown, M.D., at MUSC Women’s Health’s North Charleston office.

“Dr. Brown, she took me in as a patient. She listened to me. She listened to what I was telling her. She ran all these tests,” Mack said.

During an ultrasound, Brown saw lots of uterine fibroids. But she also saw a mass that concerned her. She arranged for Mack to return for a biopsy, warning her that it might or might not be cancer, but that they needed to test it so they could know for sure.

Soon, they had the answer. It was cancer.

“It was shocking,” Mack said. “I cried. I panicked. I got scared, and I was upset.”

Even though Brown was the bearer of bad news, Mack was grateful that she had found an answer.

“It took her time, her patience, her dedication and her doing her work as a doctor to find out what was wrong with me,” Mack said.

Uterine clear cell carcinoma

Uterine cancer is the most common gynecologic cancer in the U.S., with almost 68,000 people expected to be diagnosed this year.

Of those 68,000 people, most will have endometrial cancer, or cancer that starts in the lining of the uterus.

“Women need to see a gynecologist every year, even after they're done with having kids, even after they go through menopause, even if they've had a hysterectomy – women should go to a gynecologist once a year for their annual exam."

Taylor Orellana, M.D.

Only about 5% of uterine cancers are clear cell carcinomas, and much less is known about this type of uterine cancer. What is known is that it tends to be more aggressive than other types of uterine cancer.

Regardless of the type of uterine cancer, Orellana said that abnormal bleeding is almost always present.

“Any bleeding after menopause needs to be evaluated by a gynecologist, no matter how much or how little,” she said.

She also emphasized that women should have a gynecologic exam every year.

“Women need to see a gynecologist every year, even after they're done with having kids, even after they go through menopause, even if they've had a hysterectomy – women should go to a gynecologist once a year for their annual exam,” Orellana said. “It is always very unfortunate when we see cancers that we could have intervened on earlier, but women were not aware that they needed to keep seeing a gynecologist or did not know the warning signs of gynecologic cancers.”

Holidays in the hospital

It’s almost funny now – almost. At the time, it seemed like every time there was a holiday, Mack ended up in the hospital. It got to the point where her nieces and nephews teased her that they were missing out on their grandmother’s cooking because Mack’s mother, Betty Mack, always accompanied her to the hospital.

“They’d tell me, ‘You just sit still. We don't want you to move because we want to eat,’” Mack said.

Mack was officially diagnosed on Aug. 17, 2020. The plan was for her to undergo a robotic hysterectomy. Before that could happen, on Oct. 25, Mack started passing large blood clots at home. Scared by the amount of blood she was seeing, she called out for her mother, who called 911.

Mack was taken to the MUSC Health Emergency Department, where the staff alerted her doctor, gynecologic oncologist Matthew Kohler, M.D.

“He was like, ‘OK, Miss Mack, you're not going home,’” she said.

Instead, she was in the hospital through Halloween. Gynecologic oncologist Whitney Graybill, M.D., performed the hysterectomy. Mack needed 36 blood transfusions during this time.

Once she was released, she was back home for a few weeks when, on the night before Thanksgiving, she started having pain again.

“We were all sitting at the table peeling potatoes and stuff, and once again, I took sick,” she said.

Her mother rushed her to MUSC, where doctors found that fluid had backed up into her incision.

And then there was the Easter Monday when Mack woke up with sharp, stabbing pains in her eye. Once again, her mother brought her to MUSC, where Mack was diagnosed with meningioma, a type of tumor in the skull. These tumors don't often behave in a cancerous fashion, but they can cause a lot of pain if they’re pressing against nerves.

Meningiomas aren’t that common; about 34,000 people each year are diagnosed with a meningioma. Although researchers don’t know what causes them, one study from 2011, the Iowa Women’s Health Study, found that women with uterine fibroids were more likely to develop meningiomas.

Whatever the cause, Mack had a strawberry-sized mass in her head that needed to be removed. Sunil Patel, M.D., chairman of the Department of Neurosurgery, performed the surgery. Mack is now under the regular care of Scott Lindhorst, M.D., a neuro-oncologist who monitors her brain health.

Turning fear into faith

Mack’s cancer journey isn’t over. For many people who’ve had cancer, the journey is never truly over. Side effects, including physical, psychological and financial, can reverberate for years.

Mack, for example, still takes medication for cancer, seizures, heartburn and the secondary diabetes that developed as a result of the steroids she took to help with the side effects of chemo.

However, Mack is finished with active treatment, which for her included both chemotherapy and radiation therapy in addition to surgery.

The chemo was rough, she said. She lost her hair. Her toenails and fingernails turned black. Her foot swelled up; she felt sick.

“To see the changes my body was going through – it was scary,” she said. “But then I had to put God first and have prayer and turn that fear into faith. Because you’ve got these doctors here, so stop being scared and take that fear away.”

And, of course, Mack’s cancer journey had begun during the first year of the COVID pandemic. That first summer and then the first winter of the pandemic hit hard in South Carolina. But Mack said that her care team never showed the strain.

“Me and my mom were coming back and forth here in the height of COVID,” she said. “None of my nurses, none of my doctors in the main hospital – I didn't see them upset. I didn't see them have a bad day. Everybody treated me just like their own. They had such smiles on their faces.

“They could have not been here. They could have stayed home with their families because COVID was high. None of them did. And everybody knew me and my mom by name,” she said.

It seems like she’s stayed on just about every floor of the hospital with all those comings and goings, she said, but she’s always felt taken care of.

“Those nurses were awesome. They were kind. They were patient. They never gave up. They always checked on me. They made sure I had everything.”

That personal connection and care from team members, ranging from nurses to pharmacists to doctors, led Mack to call them her guardian angels.

“I put my life in their hands,” she said. “I just love them to pieces.”

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