Georgia woman finds hope in the shadow of cancer

JOHNS CREEK, Ga. (FOX 5 Atlanta) - With her mom by her side, 53-year old Leah Maile cross-stitches a pattern she designed herself.

It's kept her focused during the most stressful time in her life.

It began 6 years ago, with a bump on her arm her dermatologist biopsied.

Then, he called.

"He said, 'Leah, we found you have a sebaceous carcinoma, and I don't ever see those in my office,'" she remembers.

That's a rare oil gland tumor. 

And, more troubling, it's also a sign of something called Muir-Torre syndrome, or MTS.

It's a type of Lynch syndrome, a genetic disorder that could mean the Johns Creek retail planner, married nearly 30 years to her college sweetheart, Jeff, and the mother of son, might be at very high risk of developing a series of cancers.  

When she researched her family history, Maile found multiple cancers on her father's side.

"(I found) endometrial, colon, my sebaceous carnicoma, ureter cancer, which is also very rare, bladder, kidney cancer," she says.

She had surgery to remove the tumor.

A year later, Maile developed another cyst, this one in her back, under her bra line.

"It looked like a little pencil knot on my skin," she says. "It felt like a little pencil eraser."

It, too, was another oil gland tumor. 

Genetic testing at Northside Hospital confirmed she has Muir-Torre syndrome.

That's when it hit her.

"I realized how all-consuming it was," Maile says.  "It's an 80% chance of colon cancer in your lifetime, around 60% endometrial.  Ovarian is high. GI cancers are high."

So, after surgery, Maile came to see Atlanta Cancer Care medical oncologist Dr. Ron Steis, who ran a blood test to see if she was anemic.

"When I found she was iron-deficient, I thought she must be bleeding in her GI tract," Dr. Steis says.

The next day, after a scheduled colonoscopy and endoscopy, Maile was diagnosed with cancer in her small intestine.

"And I'll have to tell you that one hit me pretty hard," Maile says.  "All kinds of things go through your mind. You know you've done everything you can do to try to prevent this.  We had scanned and scoped before that."

She underwent chemotherapy, major surgery, then more chemo. 

And, they were just getting started.

"It doesn't stop," Dr. Steis says.  "You're born with that defect and you're going to die with that defect.  And the name of the game in between is to monitor people so that they never get a cancer that is advanced and incurable when it's found. You want to find it at the earliest stages and take care of it at the earliest stages."

Leah Maile is grateful for her Northside cancer team, who have since found and treated more early cancers.

Now that she knows to be vigilant, Maile says, she hopes to be here, stitching her family's story, for years to come.

"I can let it overwhelm me, or I can let it empower me," she says.  "And, it's given me the power to control the tests that I have."