Lung Cancer Patient Finds Cause to Keep Fighting

Claire Chasles wants to know there is a reason to keep fighting. That is obvious both from the questions she asks and the ones she doesn’t. She seeks no predictions, and her doctor offers none. He says only: “It’s serious, but it’s not over.”

For now, that is enough.

“That’s what I wanted to hear,” Claire says. “I’ve still got a lot of fighting left.”

Claire, 42, has advanced lung cancer, caused by 25 years of smoking that began when she was a teenager. She cannot undo the behavior of her youth. She can only live with its consequences.

In that regard, she is like hundreds of thousands of Americans who became addicted to cigarettes in their teens and who developed serious smoking-related illnesses years later, among them lung cancer, emphysema and heart disease.

At the same time, Claire hopes that her ordeal eventually will have a positive effect on her 21-year-old daughter, Christine Schulze, who is four months’ pregnant and still unable to quit smoking.

The prognosis for advanced lung cancer usually is grim--a life span typically measured in months, rather than years. But who knows? Although Claire’s tumor is growing, it is doing so slowly and scans of her bones, head and organs show no signs yet that the cancer has spread.

“That’s why I haven’t gone out of my way to discourage her, or present a gloom-and-doom scenario,” said Dr. Naiyer Rizvi, her oncologist at Georgetown University’s Lombardi Cancer Center. “She may do well for some time.”

For how long, he won’t say. He can’t say, really, because he doesn’t know. And Claire doesn’t ask.

Soon she will begin the first of half a dozen daylong intravenous chemotherapy treatments, and much will depend on how the tumor responds. It won’t be a cure. Lung cancer can only be cured when caught very early. Few cases are found at that stage. But today’s drugs are more effective than those used in recent years against the disease, so there is reason to hope that she will gain some time.

While it may seem at times as if Claire and her doctor are avoiding the crucial issues, dancing around the truth, his responses have been honest--albeit tempered by the cues inherent in her questions.

Informed Consent

Claire knows that lung cancer is a serious life-threatening disease. How much she is told beyond that is up to her.

“A patient should determine how much information she wants and how much she wants to hear about what the future holds,” said medical ethicist Art Caplan. “The doctor should always allow the patient to set the emotional tone for a battle against a serious disease.

“Medicine is not just blasting tumors, it’s also providing support and allowing someone to maintain a sense of dignity and control,” he added.

In the past, doctors typically preferred to shield sick people from bad news about their prognoses. That attitude changed dramatically, however, with increasing acceptance of the concept of informed consent--a belief that patients should be given enough information to help them participate fully in their care. But some experts believe that sometimes the notion has been taken too far.

“I think, unfortunately, one of the unanticipated bad consequences of emphasizing informed consent to doctors is there’s a tendency to think everybody has to get the worst spin on their medical prognosis and listen to every horrid nasty outcome imaginable,” Caplan said. “That is not true. Informed consent is meant to empower patients, not terrify them and not crush their spirit.”

There is little existing research that examines the role of a patient’s attitude in the outcome of battling a serious disease. But anecdotal accounts abound of those whose positive spirits seem to have made a difference and who were determined to be there for important life-cycle events.

“I want to be able to hold this baby,” Claire said of her grandchild, due in the fall. “I want to do all the things a grandma’s supposed to do. I’m determined. You ain’t seen the last of my face yet.”

Doctor’s Approach

Rizvi’s approach stands in contrast to that of a group of doctors who treated Claire briefly during an emergency last month--an episode that her family would prefer to forget. But it is a compelling example of how some health professionals convey information about seriously ill patients to their loved ones.

Claire was having difficulty breathing one night. Rather than make the long drive to Georgetown University Medical Center, she rushed to an emergency room near her home in Bowie, Md.

There, physicians unfamiliar with the details of her case opened up her chest to drain a buildup of fluid in her lungs. Apparently unprepared for the extent of the cancer, they pronounced her case terminal.

“I’ve got bad news for you,” Christine recalls the doctors telling the group, which also included her fiance, Joe Kelly, and her younger sister, Carole. “The whole lung is covered with cancer. She has only six months to a year.”

Christine collapsed in tears. Joe, a gentle man with bright reddish-blond hair and a large matching handlebar mustache, relayed the news to Claire as she was regaining consciousness.

“It doesn’t look good. It doesn’t look good,” he told her, rubbing her hand.

In her semiconscious state, Claire thought that she was dying. Right then.

When Rizvi learned what had happened, he called Christine to reassure her.

“Her cancer has progressed, but there have not been any terrible telltale signs that the disease has progressed dramatically,” Rizvi said later. “Although the overall prognosis [for lung cancer] is still quite poor, the treatment for lung cancer is getting a little more encouraging.”

Like Claire, Christine has chosen to hold onto the hope in his words.

“I’m now taking it day by day, each day that I have her, and not looking at it as six months, or a year,” Christine said softly. “I believe she knows it’s going to happen one day. But I think she believes that when she does die, she will have been around long enough so her grandchild will know who she was. As long as she has that positive attitude, anything can happen.”

Hospital Visit

Several weeks later, Claire and Joe have come to Georgetown to talk with Rizvi about what happens next. She no longer is participating in a clinical study of an experimental drug; the tumor has grown too much.

She is still weak and Joe grabs a wheelchair for her as they come through the front door of the hospital. She complains that she is hot, and fans herself with cancer pamphlets she picks up from the tables in the waiting room.

“She kept the windows open all night, and I was freezing,” Joe jokes, but he looks concerned.

While Claire still craves cigarettes, she has given them up because smoking now is painful.

Rizvi arrives, asks a series of questions, then says: “At this point, chemotherapy really would be the way to go.”

As he explains the process, she nods and occasionally punctuates his sentences with an “OK.”

“You’ll be getting two drugs--taxol and carbo platinum--as an outpatient,” he says. “They will be administered intravenously from 8 a.m. to 4 p.m. There will be minimum to no nausea. You will lose your hair after about two or three cycles. You’ll probably experience progressive fatigue.

“It will involve one day every three weeks, typically six treatments in all. Midway through, we’ll do a chest X-ray and a CAT scan. Hopefully, we can get some control of this tumor.”

“We will,” she declares. “I ain’t ready to quit.”

“I can’t mislead you that things are rosy,” he tells her. “The situation is a little more serious now. But it’s not a grim, grim picture. We’re getting a pretty good response rate from the drugs, better than from the drugs used five or 10 years ago. I can’t tell you how bad it is yet. It’s serious, but it’s not over.”

“It’s not like death is knocking?” she asks.

“No,” he replies.

“That’s what I wanted to hear. I have a lot of fighting left. I didn’t kick enough ass last time.”

He smiles.

She asks: “What’s the outlook for getting me past an 18-month checkup?”

“You mean, from now?”

“Yes. Is it too early to say?”

“Yes, it’s too early. But they’re not zero.”

Stubborn Infection

When Claire and Rizvi finish talking about the chemotherapy, she tells him how hot she feels. When he lifts the front of her sweatshirt to examine the incision on her right side, he sees that it is red, hot and inflamed. Claire, it turns out, has a vicious infection. He prescribes antibiotics and instructs her to come back at the end of the week.

But the infection does not go away, and she is admitted to the hospital again, this time at Georgetown. She is placed in intensive care and antibiotics are administered intravenously. When the doctors operate again, to clean out the infected area, they have to remove three ribs to get there.

Chemotherapy is postponed for now. Because the drugs suppress the body’s immune system, the infection could worsen.

Claire, who has already purchased a new wig, is impatient to get on with it. Both of her parents have recovered from cancer. Her mother had breast cancer five years ago and her father successfully had a brain tumor removed more than two decades ago. She says she has inherited their will to survive.

“I’m determined,” she says. “There’s something within me. Maybe it’s not being realistic, but I’m determined. As long as I’ve got the fight in me, I’m gonna use it.”

While there are few studies about the mind’s effect over cancer and other life-threatening diseases, the literature suggests that the influence is beneficial. At the very least, Claire’s attitude almost certainly will improve her quality of life, for however long she survives.

“If you can have your mood lifted while you’re fighting cancer, why not?” said Ellen Stovall, executive director of the National Coalition for Cancer Survivorship.

But Stovall--who survived two bouts with Hodgkin’s disease--cautions: “You can have a wonderfully positive attitude and still not do well against cancer.”

At least two studies have shown that a patient’s emotional outlook does make a difference in survival time.

In 1989, a 10-year study of women with breast cancer showed that those who participated in support groups lived an average of 18 months longer than those who did not. A UCLA study released in 1993 showed that patients with melanoma--an often-fatal skin cancer--who participated in support groups increased by threefold their chances of surviving five years, compared to those who did not.

This is good news for Claire, who embraces any and all encouragement not to give up.

“I don’t want to hear anything grim,” she declares. “I’m not gonna let it take over. It’s trying, but I’m not gonna let it win.”

And she welcomes support from all sources.

Recently she received a small package from colleagues at the University of Maryland, where she worked until going on sick leave last fall.

Inside was a tiny gold figurine of an angel.

She opened the card and dissolved into tears.

It read: “This angel is to watch over a very special person.”

It will be hanging over the front door when Claire gets home.