Leah Maile was at her annual dermatologist visit in fall 2013 at Northside Hospital when she noticed a suspicious cyst on her arm. That December, she had it analyzed… just to be safe.
In January 2014, she received the harrowing news. Pathology results reveled Leah had a sebaceous carcinoma, a rare type of skin-cancer. So rare that its diagnosis only appears in 2 out of 1,000,000 cancer patients each year. Dr. Scott Davidson, an oncologist with Northside Hospital Cancer Institute (NHCI), removed the cancerous cyst and a suspicious lymph node. And when a similar cyst appeared a year later, he removed that too.
Leah knew there had to be a reason for the second occurrence and sought help from Northside Hospital’s Cancer Genetics Program to better understand her medical predisposition for this rare diagnosis. Leah’s family health history had no signs pointing to hereditary cancer, but her genetic test revealed Muir-Torre Syndrome (MTS), a rare hereditary cancer syndrome that increases risk of developing colon, genitourinary tract, and skin cancers.
The news gave her an odd sense of relief knowing there is a reason behind her cancer occurrence. Leah contacted each of her doctors to discuss how, because of her genes, she is predisposed to cancer and what next steps would be necessary.
First, in May 2015, she met with Dr. Kelly Carson, gastroenterologist, affiliated with Northside Hospital for an early colonoscopy -- one full year before the recommended age for this screening procedure. To their surprise, the colonoscopy revealed two large, precancerous tissue growths. Had Leah waited, she would have been diagnosed with colon cancer at her first screening.
Leah then underwent a preventative total hysterectomy with Dr. H. Kit Howard in September 2016, a key step in managing her possible cancer diagnoses from MTS.
Two years later, in May 2017, Leah met with NHCI oncologist Dr. Ronald Steis, who specializes in treatments tied to Lynch syndrome, a type of inherited cancer syndrome associated with a genetic predisposition to colon cancer. Upon initial bloodwork, Dr. Steis discovered an internal bleed and notified Dr. Carson before Leah’s upcoming, annual colonoscopy.
The colonoscopy revealed a duodenal adenocarcinoma, a rare cancer of the small intestine, along with 40 additional tissue growths in Leah’s stomach.
“Because we knew my genetic issue, my doctors and I were able to act early and save my life,” she said.
This discovery necessitated a Whipple surgery, a complex and difficult operation to remove the head of the pancreas, the first part of the small intestine (duodenum), the gallbladder and a portion of the stomach. To prepare, Leah underwent four rounds of chemotherapy to shrink the tumor in her intestine and met regularly with a nutritionist to create tailored meal plans for her new lifestyle, before and after the procedure.
On August 14, 2017, Dr. Eddie Abdalla, a NHCI surgeon and pancreas expert performed the 5-hour operation. Following surgery, Leah had eight additional rounds of chemotherapy. And finally, in April 2018, four years after she first discovered the cyst, Leah’s scans came back clear and she’s been celebrating life cancer-free since.
Today, Leah continues to have regular follow ups to screenings with her team of oncologist, surgeons and nurses at Northside Hospital.
“It’s not a death sentence, it’s a surveillance mission,” she said. “Whatever happens, I know I am in the most capable and caring hands.”
*The health story shared here may portray atypical results of survival for this type of cancer, given its severity and stage. Atypical results are considered surviving a cancer that has less than a 50 percent five-year survival rate. Patients should consult an expert to discuss specific treatment plans and the possible outcomes before making medical decisions.