Lee Giller has gotten used to the confused looks on people’s faces when he tells them he has stage IV male breast cancer.
“They are dumbfounded,” said Giller, who was first diagnosed nearly eight years ago.
He was treated, thought he was “out of the woods” and then discovered last fall that the cancer had spread to his lungs, liver and bones.
Doctors said the average life expectancy is about 24 months.
That has not stopped Giller and his family from raising money for breast cancer research for Susan G. Komen for the Cure, the largest breast cancer organization in the world.
The family has raised about $250,000 for the disease that strikes 200,000 Americans each year, and of that about 1 percent, or 2,000, are men.
To reflect the rarity, the Komen for the Cure slogan for its support of men is “Breast Man Walking — Male Breast Cancer, Rare but Real.”
The Akron man’s wife, Kathy, said many people think she must be joking when she discusses her husband.
“It is so unfathomable,” she said. “That is the only way they know how to react.”
Giller, 55, was diagnosed in 2005 after discovering a lump on his chest.
The cancer had spread to a few lymph nodes, and Giller underwent a mastectomy, chemotherapy and radiation.
His paternal grandmother had breast cancer, and Giller, his daughter Pamela and son Jay all learned that they carry the breast cancer gene BRCA1. Pamela was diagnosed with a nonaggressive form of breast cancer in 2011 at the age of 28.
Signs of recurrence
Giller sold his Macedonia fabric company, B. Berger, last summer. About that time, he began to notice occasional shortness of breath, including during the 60-mile, 3-Day for the Cure event in Cleveland in August.
“I have been an athlete in shape all my life,” he said. “I knew especially walking up a hill I was breathing hard. Much harder than I normally would breathe.”
On a fall drive to Washington, D.C., wife Kathy suggested he be checked for a cough.
“The odds of me getting [breast cancer] to begin with were so slim,” he said. “I figured if it came back it would be like getting hit by lightning.”
A CT scan discovered spots on his lung, and further testing showed the cancer had spread to the bones and liver.
Giller is now undergoing chemotherapy every three weeks at the University of Pittsburgh Medical Center and also is involved in a trial run of an experimental drug. He is not sure if he is getting the experimental drug or a placebo.
After his treatments, he usually does not feel well for the next week or so, he said.
“I slowly recover and then by the time I am feeling pretty good, it’s time to start another one,” he said.
When he is having a down day, he has to deal with “nausea, bone pain … extreme fatigue. You just don’t feel like getting out of bed. You can’t really walk up the steps.”
He said that though there are patients who have survived 20 years, his doctors said the average survival rate for stage IV male breast cancer is 24 months from diagnosis.
Kathy Giller said: “Knowing what we know about his prognosis and about his disease, I still have a really hard time grasping the fact that we are facing this now. We both thought we were going to be the lucky ones. We were going to dodge that bullet.”
Volunteering for a cause
Meanwhile, they continue to support Komen.
Lee Giller is on the Northeast Ohio board. Kathy Giller has been the top fundraiser for the Cleveland 3-Day walk for several years and was named co-survivor of the year by Komen in 2010. She has already raised $15,000 for the August 3-Day and hopes to raise $30,000 for the event.
“He makes it easy for me,” she said of her husband. “He is amazing. He never complains.”
The family has done 15 of the 60-mile, 3-Day walks since the first diagnosis.
Pink is a popular color in their home. There are pink orchids in the kitchen, Kathy Giller wears a pink sweater and pink scarf, her cellphone case is pink, and her husband wears a pink shirt.
As she solicits for Komen, she sometimes uses pink paper for her message.
“Even though stage IV breast cancer is not curable, breast cancer never is, there is hope,” she wrote in a fundraising letter. “If you think all the walks, the races, the pink ribbons, and the attention that breast cancer gets is for naught, think again. Not only do these events raise critical dollars to fund research for treatments and ultimately a cure, they give survivors, co-survivors, and families of the fallen a way to hope and to heal.”
The Giller family is an inspiration, said Sean Shacklett, the new executive director of the Komen Northeast Ohio affiliate.
There is a “general misconception that breast cancer is a female-only disease,” said Shacklett, a Richfield resident.
“Lee is a pinnacle of strength as he fights this terrible disease and is a shining beacon of hope to others.”
Denise Grcevich, of Chagrin Falls, president of the board of Komen Northeast Ohio, calls Lee Giller a “quiet force” and “one of the most thoughtful, dedicated and generous volunteers I know.”
Sharing their struggles
Kathy Giller started a blog on the Caring Bridge website last fall, and early this month expressed hope.
“The symptoms have improved markedly,” she wrote. “Lee’s cough is not nearly as frequent or as severe … Obviously what we really hope for is a miracle.”
Last week, after receiving new results, she wrote: “The cancer is responding to treatment. There is an overall 30 percent shrinkage in the tumors.”
She added, “We still have an uphill battle ahead, but today the road looks a little brighter.”
At a meeting last week at the downtown Akron-Summit County Public Library, Lee Giller told a group of 20 about his cancer journey and the upcoming 3-Day summer walk.
“There is no end in sight,” he told the group as he described his treatment schedule. “Once it metastasizes to your organs, you live with it.”
But he added how grateful he is for their support.
“You guys are my hope, you guys are the reason that I am optimistic,” he told them.
Jim Carney can be reached at 330-996-3576 or at email@example.com.