February 17-23, 2005

cover story

Out of the Abyss

A self-portrait by Jean Lait, a graphic artist, former City Paper employee and breast cancer survivor.

Once isolated, young breast cancer survivors now find strength in numbers. This weekend, thousands will meet in Philly to find a way out of the darkness.

by Bruce Schimmel

In the fall of 1995, Dr. Andrea Pedano was taking a cruise in the Caribbean when she noticed what looked like a dent in her left breast. She had never given herself breast exams — "Not at 34," she says — and her own doctor had noticed nothing in a routine checkup six months earlier.

But after seeing the shadow on her breast, "I went feeling around and I felt a lump," says Pedano, a 5-foot-3-inch bodybuilder with luminous green eyes, who describes herself as "built like a fire hydrant." It's an apt metaphor; Pedano also served as a volunteer firefighter. In fact, she graduated firefighter school the same day she became a doctor.

Returning to Philadelphia that weekend, Pedano was back in her office on Monday, seeing patients. "This was not going to stop me in my life," she recalls.

The next day, Pedano was on the surgeon's table for a biopsy. The results came back that same day: The tumor was malignant. On Wednesday, Pedano returned to work. Thursday, she was under the scalpel again, as the surgeon searched for disease in her lymph nodes. Waiting for the pathology report to arrive on Friday, Pedano saw her own patients.

…It's raining and a little windy. Where I am, there used to be a city. Now all of the people are gone and the buildings are dirty and grey with the windows broken or missing. Some buildings are burnt. The only sound is the wind. Everyone is dead… There is no color in this landscape. There is no smell.

Pedano took the diagnosis, surgery and subsequent chemo pretty much in stride. "Other than a scar, my body wasn't deformed. Besides, I have scars all over my body from field hockey, racquetball; so another couple more didn't mean much."

Still, Pedano had questions that neither her medical colleagues nor older breast cancer survivors could answer. "I was faced with a couple of treatment options, and I wanted answers about my energy level, about dating, about having a sex life. I had the kind of questions that a 60-year-old woman with breast cancer cannot answer." So she formed her own support group.

Such groups for breast cancer survivors are now commonplace. But less than a decade ago, the special needs of young women with breast cancer were barely on anyone's radar. On Jan. 12, 1996, about a dozen young breast cancer survivors met for the first time in the boardroom of Pedano's firehouse.

Early on, as group leader, Pedano passed along a warning she'd heard to the women gathered. "I warned them about the crash and burn," she recalls. In other words, the deep depression that strikes nearly everyone after treatment. With her own chemo finished, Pedano felt prepared.

She wasn't. "Despite being warned about it, it happened," she says. And by the time Pedano pulled out of her own downward spiral, she had gained more than 50 pounds. She had fallen into the abyss. The tough fireplug had cracked.

"You go home and you sit there and think, "My God, what happened?' You start asking yourself why me, why now, why did I deserve this?"

There is a place that anyone with a devastating disease will tell you about. It's when the disease kidnaps you and takes you to a terrifying place, a lonely place where hope is shattered, and your heart is broken. You feel utterly alone. It goes by many names. Psychiatrists call it a profound depression; a philosopher might term it existential angst. For a minister, it is a spiritual abyss that some would call hell.

Successful treatment may lift you out of this dark hole, and you go back to your life chastened, but reasonably secure. With cancer, especially breast cancer, that never really happens. There are no guaranteed successful treatments. And the side effects of treatments currently employed almost always make survivors' lives even more terrifying.

For younger women whose sexuality is still in bloom, the attack is even more brutal, a deeper insult to their spirits. Stripped of the optimism of youth, women in their teens, 20s, 30s and 40s face a murkier future. Treatment often leaves their sexuality ravaged, their fertility in doubt.

While still relatively uncommon, the rate of breast cancer in young women is inching up. About 5 percent of all women in the U.S. are expected to receive a breast cancer diagnosis by the time they are 40. Today, there are more than a quarter-million young women in America living with breast cancer.

This weekend, a thousand young women are expected to fill the Pennsylvania Convention Center for the fifth annual and largest-to-date conference of young breast cancer survivors. The workshops are varied, covering everything from pharmacology to pathology to parenting to patient rights. But this year's keynote speaker, psychologist Julia Rowland, is a telling signal of a changing tide. Rowland is a national leader in the emerging field of psycho-oncology. On the border between medicine and psychology, psycho-oncology charts how a person's emotions might change the course of their cancer and how cancer, in turn, affects minds.

Rowland heads the National Cancer Institute's Office of Cancer Surviviorship, and her recent appointment signals a convergence between psychiatry and medicine and a growing recognition that surviving cancer means treating the mind and the body together. It's a lesson that almost every young breast cancer survivor feels in her heart.

"All cancer imposes a sense of control over people," says Rowland from her office in Bethesda, Md. "But breast cancer is particularly acute in young women, who are used to being in charge of their own lives. Breast cancer just isn't as scary a disease in older women. Older women are not generally as concerned about intimacy and fertility.

"For a young woman, you're moving forward — and this is God's way of saying, "You thought you had plans.' You can fall into an abyss," says Rowland, "and the climb out for a younger women can be tougher, because they get into it deeper."

And they get into it deepest, says Rowland, just when it is least expected. The crash generally comes not during but after radiation and chemo end. After treatment. When the medical doctors are done, as the pain and nausea subside, just as life is supposed to be getting back to normal. That is when most women hurt most.

"In the past, all we worried about was the treatment," says Rowland. "But the reality is that the end of treatment is the most terrifying time. At least before you had a focus in your life — getting through the treatment."

In 1998, at the age of 35, Jean Lait had been married for just six months when her husband discovered a lump in her left breast. They were fooling around at the time, Lait recalls — her husband discovered the lump "as a husband might."

The months of chemotherapy that followed were terrible, says Lait. But her friends and new husband rallied around her: cooking, cleaning, chauffeuring and caring for her as the toxins wore her down.

As therapy ended after four months and people wandered back to their own lives, Lait's spirits sank from bad to worse. Lait was suffering, and people didn't get it.

"When I saw the looks on my friends' faces — the strained, fearful, slightly pitying look," says Lait, "the look [that] says, "Didn't anyone tell you? Your treatments, your cancer IT'S OVER!' I sank lower into depression, because I felt powerless to do anything more since the treatment was over."

A tall woman, before chemo Lait was also slender with long, naturally blond hair that framed her pale blue eyes. She was active and athletic. After therapy, she stayed inside most days and gained a lot of weight.

"When I looked in the mirror, I felt like I was looking at a stranger. I felt like I was looking at an alien. My skin was smooth and shiny, and I kept asking myself, "How did I get here?'" Her long blond hair fell out and grew in a dull brown. Her hair is still dark today.

No one around Lait understood the fear that gnawed at her, or the terrible place into which she had fallen. Her nightmares and her waking fears were flowing into each other, as she wrote at the time in her diary:

I woke up last night from a nightmare. It woke me up because I realized that the images in the nightmare are images that my subconscious had been painting while I'm awake, and now I have to look at them every minute of every day. It was the only time I have woken up sweating and yelling at nothing.

Here is the nightmare: I have no hair and no clothes and I'm a little cold and dirty. I want to feel embarrassed but I look around and there isn't anyone in sight. I'm standing in the middle of the street. It's raining and a little windy. Where I am, there used to be a city. Now all of the people are gone and the buildings are dirty and grey with the windows broken or missing. Some buildings are burnt.

The only sound is the wind. Everyone is dead. There is another sound but I can't make it out. It kind of sounds like a ship bell with a long echo or a rock song stuck on one chord. The cars parked along the side of the street are long abandoned. There is no color in this landscape. There is no smell.

It's an apocalyptic feeling. A feeling not of pending doom, but a sinking feeling that everything that was ever feared has happened. Panic and confusion. What do I do? Where do I go? I yell. No answer. I look for something familiar a landmark, a restaurant, a house. Nothing.

From the depths of her depression, Lait's world began to swirl around her, as it did in her dream. "That's when everything starting sliding past me. Like the world was built on someone's drafting board and they've decided to fold up the table and go home. It starts slowly, then picks up speed. I start to slide and grab on to the manhole cover in the middle of the street to keep from falling. I look at the sky. It's dark and terrible with everything in the world falling into it like there isn't any more gravity. My eyes start to hurt with the impossible images they are seeing. As the manhole cover comes loose and I start to fall, oh, God."

What Lait went through is common. "You cross into a new territory," says Rowland, "and there is no going back. You are inexorably changed. You are a different person than you were."

Continues Rowland, "The family is kind of saying that things should be back to normal, but that person is changed irrevocably."

Lait's friends' attempts to console her were met with anger.

"I feel like smacking anyone who tells me how "great' I look," Lait wrote in her diary. "Yeah. The picture of fuckin' health. Wouldn't it be great to have the one person who sees me and says, "Whoa! What the hell happened to you?' The politeness is killing me."

Lait now says, "My husband tried very hard. Not knowing if or when the cancer would come back depressed me. But I think it really scared the shit out of him. I think he may have understood me and my fears — but not himself, his own fears of death."

The possibility of losing a marriage or destroying a relationship is among survivors' biggest fears, Rowland says, despite research suggesting that marriages after diagnosis fare about as well as marriages in general. Still, for younger women, with much of their lives hopefully ahead of them, survival itself will become even more important than almost any relationship.

Breast cancer is very "permission giving," says Rowland. Younger women, especially, will use breast cancer as an opportunity to examine every part of their lives and to change them, to confront "all those existential issues of how to make sense of this disease."

Research suggests that if a woman feels that her marriage is hurting her chance of survival, she'll do whatever it takes to safeguard her future health. Young women, whose worlds are still in flux, will abandon their lives in order to survive.

"My husband was ready to get back to the life we once had," says Lait. "But for me, there was nothing I wanted less than to go back to that life. I told my husband that I was changing my own life. I asked him to take the trip with me in order to keep from drifting apart. He agreed, but it proved to be too much for him."

The couple divorced in 2001, three years after the diagnosis. Lait is now single. She moved from Philadelphia and lives alone in rural New Hampshire, where she has plans to open a bookstore. Seven years have passed, and her cancer hasn't returned. The disease doesn't hang on her mind as it once did, and she's come to see her breast cancer as a kind of blessing.

"Some breast cancer survivor might look cross-eyed at me to [hear me] say this," says Lait. "But in many ways breast cancer was the best thing that ever happened to me. After all this, you learn to open yourself in ways you hadn't thought of, and it creates an energy that's palpable. Because when you finally stop crying, the laughter goes on forever."

Today, Pedano's firehouse's boardroom has been converted into a sleeping area for men. Standing next to a gleaming fire truck, looking into the bunk room, Pedano remembers the pain that poured into that room.

"There were some women who came and all they wanted to do was whine and cry about it," she says. "I wanted it to be proactive and uplifting, instead of reactive and depressing."

The topic of that first young survivor meeting in 1996 was sex and intimacy after breast cancer. It is still the most popular topic today.

But instead of whining and crying, a recent meeting of the Young Survivors Network produced gales of laughter. Big, raucous laughter, a regular wall of guffaws. From a hotel meeting room in West Conshohocken, 60 young women — most finished with treatment, when depression is most likely — are chortling and roaring.

The crowd has come to hear Dr. Ann L. Honebrink, medical director of Penn Health for Women at Radnor, on the topic of dealing with premature menopause in young survivors. One woman in the audience is wearing electric earrings that blink red and green. "They're my hot flashes," she grins.

That fighting spirit: Andrea Pedano organized one of the first young breast cancer survivor groups. "I wanted it to be proactive and uplifting, instead of reactive and depressing." Photo By: Michael T. Regan

The women are peppering Honebrink with questions about how women in their 20s, 30s and 40s can cope with hot flashes, dry vaginas and the feeling of "bugs crawling over you." They ask about their ovaries, shut down by treatment, whose unexpected "rebooting" and "bouncing back will drive you nuts." As Honebrink details each symptom, the women roar back like a gospel meeting.

The women ask about non-FDA-approved use of drugs. Many have already experimented and share their results. The crowd lets loose a long "ohhhh," as a woman describes how testosterone cream can enlarge the clitoris.

There's no shame, embarrassment, silliness, or coyness. As young survivors they will do whatever it takes to stay out of the abyss, including openly mocking their inner turmoil.

"You see this incorrigible fighting spirit," says Pedano. "It's one of the things you pick up on when you're around young survivors — as in, "Fuck this; this isn't going to end my life.'"

Despite this, Pedano originally felt failed by the support group she created. She finally turned to a therapist to stay afloat and started to remake what she had thought was already a wonderful life. "I needed to make empowering choices, because it would send a message to my immune system," she says.

One of choices that Pedano made was to change her dating habits. "I stopped messing around with knuckleheads," she says. "Cancer led to a more healthy and stable emotional state." Within two years, Pedano found a man to marry.

Today, Pedano has an active family practice in Roxborough and is finishing a second degree in psychoneural immunology. Her cancer has not returned. And more than ever, she's convinced that cancer is in some ways a disease of the spirit.

"There's a theory that a broken heart could lead to breast cancer," says Pedano. "I wouldn't rule out my broken heart as a causative factor." She puts her hand on her breast. "My own cancer was directly over my heart."

Many women share Pedano's belief that breast cancer is caused by their mental health, says Dr. Rowland. And while there is scant, some say no evidence of a direct correlation between a broken spirit and breast cancer, some studies do suggest that post-treatment depression can affect the chance of survival.

"The immune system looks for any signal, including negative thought," says Pedano, who advises her own cancer patients to "get the toxins out of your space. Whether that's cigarettes, your job, the food you eat — or toxic people."

Does she take her own advice? "Oh, God, yeah. There's no space for those things in my life. Anyone who disempowers you ought to be gone."

Like every other survivor, and those who will be in Philadelphia for the convention this weekend, Pedano says she continues to struggle with "the fact that you have to live with the thought that you've had cancer. It's like you got your death sentence, but they forgot to tell you when. At some point it occurs to me every day that I've had cancer."

A religious person, Pedano says she leans on her faith and has found comfort in a kind of fatalism. "I have a strong faith. I told God that if I had a mission and if it wasn't over, then he needed to support me through this. I think there's a reason for everything."

So what is the mission that breast cancer gave her?

"Even now, I haven't figured that out," says Pedano. "But it's on my list of the top 10 questions I'm gonna ask God when I get to heaven. And if I don't make it there, I'll just ask the other guy."