Being Positive?

Being positive for me means trying to avoid easy traps to fall into: dwelling on cancer, being afraid to make plans, enveloping myself in a cancer identity.

Two months after my breast cancer diagnosis I was at the park with my 1-year-old daughter, Kirtley, when an old friend showed up with her two kids. After hugs and shrieks at such serendipity, we began catching up. Her quizzical stare told me to go first since my very bald head made it clear that I had either joined a cult or was going through treatment for cancer. She was appalled to hear it was the latter, at which point she started regaling me with information on why it was critical that I not let a negative thought enter my head—or I would die.

She didn’t say exactly that, but when I look back on it, that’s what I heard. Of course I told her I was being positive because, at the time, some literature suggested that bad, negative people gave themselves cancer, and I surely didn’t want her to think I was part of that group. Of course, the reality was that as I told her I was being positive, I was thinking, “Yeah, I’m positive I’m scared to death,” and fearing that if she was right, I was sure to die because there were few nights I didn’t lie in bed and wonder how my daughter was going to manage adolescence without me.

That was almost 20 years ago, and now people who offer any kind of advice for those with cancer have become a bandwagon for me. Indeed, a bandwagon from which they are thrown headfirst to the ground for uttering any admonition to “stay positive.”

And yet, as it is with any of the purported causes or cures, those of us who have been through a cancer diagnosis want to know the validity and science of any evidence that may help us live longer or stave off recurrence of our cancer, which means we have to take a look at this mind-body information to see if, indeed, there is any proof that positive thinking will make a difference.

And the overwhelming answer is yes and no and maybe and, like every other aspect of cancer, who knows. Or as one friend said, “Would you define positive?”

Barrie Cassileth, PhD, chief of Integrative Medicine Service at Memorial Sloan-Kettering Cancer Center, has, as a career, studied, evaluated and implemented numerous forms of complementary therapy, including massage, art, music therapy and meditation. She points out that when the 1980s spawned the “attitude can impact recovery” issue, it was not the first time, adding that “blame the victim” attitudes go back at least to tuberculosis in the 19th century.

“It’s nonsense to think that if you don’t have the right emotions and thoughts you’ll get sick or you won’t recover. That kind of thinking is very hard on people with cancer. It affects the patient and the family in egregious ways,” she says, adding that making people think they’re psychologically inadequate often “leads to depression and guilt.”

Not feeling that you are “doing cancer right” can be a huge burden, Dr. Cassileth says, pointing out that people as well as their reactions to cancer greatly differ, and there is no science to indicate that how a person reacts to his or her cancer will impact survival.

It would seem that just looking at the logic of “positive thinking” would immediately point out its absurdity. You just learned you have cancer, a disease that can be life-threatening at its worst and life-changing at its best. It’s unimaginable to think you would ignore the fear that comes with such news. It’s similar to cancer survivors being told they will get back to “normal” when any survivor will tell you that our old lives are gone; what we will make is a new normal that incorporates all the life changes that cancer demands.

I like best how it was summarized by Jimmie Holland, MD, chairperson of the department of psychiatry and behavioral sciences at Sloan-Kettering and a key person in the establishment of psycho-oncology as an oncology subspecialty that deals with the psychological, social and behavioral aspects of cancer. In her book, The Human Side of Cancer, Dr. Holland devotes a whole chapter to what she calls “the tyranny of positive thinking,” explaining it this way: “For most patients, cancer is the most difficult and frightening experience they have ever encountered. All this hype claiming that if you don’t have a positive attitude and that if you get depressed you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives.”

But what about the studies that point to how the human body responds to stress or erotic photos? Isn’t that proof that attitude and feeling affect the body? No, says Dr. Cassileth. There is no empirical evidence to support the idea that the way we feel emotionally affects survival after a cancer diagnosis, except for the rare case when serious depression might keep some from completing proper treatment (see sidebar).

But what about the Ohio State University study that found weaker immune systems in patients who are stressed about their cancer compared with less stressed patients? Barbara Andersen, PhD, began studying women with stage 2 or 3 breast cancer more than 10 years ago to find out if reducing stress and changing health habits have any impact on recurrence of cancer. In her study, more than 200 women were randomized to two groups, one that received psychological interventions and one that only received psychological assessment. Participants completed interviews and other measures of emotional distress, social adjustment and health behaviors. Researchers also examined the activity of natural killer cells and T cells, both of which are critical to the body’s immune system. What researchers found was no significant change in the number of T cells or killer cells among both groups, but the women in the interventions group showed stable or improved ability of their T cells to multiply, while the women in the assessment group showed a decrease.

So, what’s the truth? Dr. Andersen’s team concedes that their research raises more questions than answers.

Since my diagnosis with breast cancer, I have seen every coping method out there. Soe women were crazy before they were diagnosed and others were eternal optimists; some stayed exactly the same and some didn’t. I know women who were grumpy, angry and never had a positive thought who have lived, and others who were cheerful and engaged who died.

Patty Ginsburg, marketing director for a local electric utility in Anchorage, Alaska, was diagnosed with stage 3 non-small cell lung cancer in 2004. Ginsburg, a long-distance runner, quit smoking more than 20 years ago. “Being positive for me means trying to avoid easy traps to fall into: dwelling on cancer, being afraid to make plans, enveloping myself in a cancer identity. I’ve still got some life to live, and I’m extremely grateful for the quality of life I’ve been blessed with.”

Ginsburg underwent radiation and chemotherapy and is now in remission. She says being positive means not being afraid to die and letting go of what she couldn’t control, while embracing what she could control. “I realized that what I could control was huge. How you respond to what happens—that’s what counts and we have enormous power in that.”

During treatment Ginsburg says her friends were surprised by how positive she was, but Ginsburg responded differently to their reactions to her attitude than to her husband when he was vocally optimistic about her future. “I

didn’t like it and told him so, because I didn’t think either of us should harbor illusions. There’s a difference between being hopeful and being falsely optimistic.” Other survivors agree with Ginsburg that identifying the difference between hopeful reality and outright denial can make the difference in living through cancer or having cancer control your life.

Fran DiGiacomo says cancer has made age 45 the average life expectancy of her family members, so it didn’t surprise her to have breast cancer at age 40. But it did surprise her to beat breast cancer and then be diagnosed with stage 3C ovarian cancer at 54.

“I have had 21 surgeries to date and been on chemo for seven years,” she says, before explaining what she calls her “mental management” technique. DiGiacomo believes that hopelessness can lead to losing the energy to seek out the best treatment. Her specific plan includes five elements: spirit, discipline, laughter, purpose and focus.

DiGiacomo says every element is part of her plan and necessary for handling the challenges of cancer and life, also allowing herself days when her body and spirit say it’s time to turn inward—not ignoring her challenges but taking charge of when she will let them keep her down.

I had my “come-to-positive-thinking” resolution about three years after my diagnosis, when the old “I-am-woman” routine was wearing off and all the emotions that had not been expressed (fear, rage, anger, frustration) finally boiled to the surface. At my annual checkup when my surgeon told me everything was great, I burst into tears.

It was clear that there was work yet to be done. She suggested I join the support group she was forming in her office. It was in the support group that I learned we are all different and what works for one person does not work for another. I also learned the most valuable lesson: Feelings are legitimate and should be honored if not analyzed. I also learned that I can choose how to respond to something, and that doesn’t mean to hide the real feeling but to choose from the smorgasbord of real ways we can respond to the universe and all the stuff it throws our way.

A number of survivor friends who wanted to talk about being positive agreed. As a group we decided that feelings are like a heavy cloud we live with after diagnosis. This cloud holds all the emotions of cancer—grief, fear, regret, anger—that if hidden away will allow us to be positive. Pretending the cloud is not there by keeping it behind us doesn’t work because it always makes itself present when we relax our guard, and the energy we exert to keep it back there becomes unmanageable. We all agreed the best place for this cloud is squarely in front, where we can decide how to deal with it—controlling it instead of it controlling us.