Cancer patients tackle condition with Flying Colors

March 29, 2007

 

When Elizabeth and John Edwards sat down with Katie Couric Sunday night on "60 Minutes" to talk about Elizabeth's recurrence of breast cancer and how it might affect his presidential campaign, Luane Semos watched with more than passing interest.

She knows a little bit about what Elizabeth has gone through in the past week: When Semos was 34, she had her first breast cancer, and, a year later, it came back, having metastasized to her bones "in several places." Semos went though chemotherapy and, eventually, a stem cell transplant, and today, at 46, she says she rarely thinks about her cancer. She's too busy working full time in finance and accounting, and chasing after her 5-year-old daughter adopted in 2001, four years after her transplant.

"Dying of breast cancer never occurs to me," Semos says.

But she and many other cancer survivors are hopping mad that dying -- specifically, when Elizabeth Edwards might die, and how the progression of her illness will affect her family -- is all anyone seems to be focusing on. The point, powerfully illustrated by the dozens of women in the weekly meeting of the Flying Colors cancer support group, isn't how or when you'll die. The point is figuring out how to live.

Just ask Barbara Snipes, who said, after her cancer metastasized to her liver in 2004, "I heard it all: 'You won't live. You'll live a year.' " Particularly

infuriating was the doctor who told her grown daughters that their mother had "exceeded expectations," a none-too-subtle way of saying she was done for.

"I just said no, this is not going to get me, I'm enjoying life too much." So Snipes changed doctors and has begun taking a brand-new drug called Avastin, which works by cutting off blood supply to her tumors. "The most we hoped for was to keep the tumors stable," she said, but after the first four treatments, the tumors' size was actually reduced.

"So far, it's working," says Snipes with a smile.

All of these women are more than aware that sometimes the drugs don't work, and no one here is saying a cancer recurrence isn't scary. But there's been so much progress. Pat McRee, who leads the Flying Colors support group and is a two-time breast cancer survivor herself, points out that 10 years ago, she and her friends "fantasized -- and that was the word we used" about drugs just like the one Snipes is taking. "And 10 years from now, there will be a group, probably us, still sitting here, boobs still perky ..."

A wave of laughter sweeps the room. "At least one ... or one and a half," someone shouts over the laughter.

But back to Elizabeth Edwards. You get the idea that many of the women in the room wish she -- and her doctors -- had told her story differently.

"I'm so sad she chose to use the word 'incurable,' " said Ellen Stucker, a 17-year breast cancer survivor. "We don't know if it's incurable or not." It's simply too early to know much of anything, the group agrees. And they mourn for the fact that Elizabeth will be making her journey through cancer in the public eye, possibly without the support of cancer survivors who have gone before her.

"This is so much bigger than her," says Judy Young, whose first "small tumor" in 1995 eventually progressed to both lungs, her bones, her ribs, her chest wall, and, eventually, to her brain. In 2001, she had Gamma Knife surgery on her brain, a procedure that uses beams of radiation, and no incisions, to remove the cancer. She says, proudly, "I last had cancer in 2001. I'm not under any treatment now." She and her husband run a successful business, and her son, 2 when she was first diagnosed, is now 13.

"(Elizabeth) doesn't know what we know," says Luane Semos, sympathetically. "All she knows is the worst part of it.

"I have a feeling Elizabeth Edwards is strong enough that she'll get where we are," she says. "And that she'll share it when she gets there."

IT'S BACK ...

Five things to know about dealing with a cancer recurrence, from the survivors of Flying Colors ( phone 901-682-3916):

1. Try not to pay too much attention to statistics. As Pat McRee says, statistics have no soul. You have the soul of a survivor.

2. Find a doctor who will listen to your concerns and work with you. If you don't have that kind of doctor at first, change doctors until you find one.

3. Remember that cancer is a journey, and everyone does it her own way.

4. Join a support group, for everything from recommendations about doctors, treatments and side effects to a group of friends who really know what you're going through.

5. Laugh as much as you can.