Managing Life After Treatment

By Rosemary Jean Cadigan, PhD, University of North Carolina, Chapel Hill & Saskia Subramanian, PhD, University of California, Los Angeles

When Mary Bartlett finished her last round of chemotherapy for breast cancer, she was, of course, excited. However, her life didn’t return to normal; the fatigue she experienced all through treatment didn’t end, and depression soon set in.

“I was supposed to be happy. I made it,” Bartlett, 52, says. “After my treatment, a lot of people around me seemed to feel you’re fine, you’re cured, you don’t need anything.”

Bartlett’s life prior to cancer had been busy. She was married with two small children and worked long hours at an engineering firm.

Today, seven years after treatment, she continues to feel the effects from fatigue and short-term memory loss to periodontal problems. Worse still, she lost her job at the engineering firm and her husband to divorce.

Bartlett’s attempts to get relief from her symptoms have been fruitless. “My doctors don’t really have information they can give me about anything that will help.”

Today, more than two million people in the United States are breast cancer survivors. And although the trend seems to be changing, there is generally little discussion about the issues of cancer survivorship.

An unknown percentage of survivors suffer from long-term side effects of their cancer treatments. These symptoms extend beyond nausea and fatigue experienced during treatment; the side effects remain, or even appear, long after treatment is finished.

As social science researchers, we wanted to know about these symptoms—not only what they are, but also how they affect women’s lives. How do survivors manage their daily routine, their families, and their jobs when they are confronted by a host of physical conditions that impair “normal” activity?

Unlike previous studies that relied upon information from large, impersonal surveys, the data in our study was culled from in-depth interviews with women who have symptoms. To be eligible for our study, which was funded by the Susan G. Komen Breast Cancer Foundation, women had to have completed surgery, radiation and/or chemotherapy treatment at least a year previously, although they could still be taking the cancer-prevention drug tamoxifen. Furthermore, they had to be currently “cancer-free” and have at least one symptom they attributed to treatment. In the end, our study included 39 white and 33 African-American women, ranging in age from 32 to 84.

Our results indicate the five most commonly reported symptoms after treatment are hot flashes (86 percent), memory loss or “chemobrain” (82 percent), chronic pain (80 percent), fatigue (79 percent) and lingering soreness and/or numbness in the breast or arms (74 percent). The high frequency of hot flashes reported by our participants is not surprising given many were taking tamoxifen, which can cause hot flashes.

There were also some surprising symptoms—ones not often researched but nevertheless reported by a sizeable number of our participants: arthritis, dental or mouth problems and vision changes. More than 40 percent of our sample suffered from at least one of these symptoms. In all, there were well over 30 different symptoms women directly attributed to treatment.

Only recently have physicians acknowledged that women can have lingering side effects after treatment. Though virtually all study participants first sought help for their symptoms from medical providers, most complained that physicians were routinely dismissive of symptoms—certain, for instance, that fatigue was due to depression or that memory loss was caused by age rather than treatment. As symptoms persisted, most women felt frustrated and helpless. In addition, many worried their symptoms signified a cancer recurrence.

“With all these symptoms, I thought I was going crazy,” says Jane Martin, 44, who is plagued with a variety of symptoms including hot flashes, decreased range of motion in her arms, fatigue and memory loss.

That changed when she learned other women had similar problems. In fact, many of our respondents found great relief in just knowing they were not alone.

“When you find another woman that has the same problem, you don’t feel as bad,” says Martin.

When physicians can’t or won’t treat lingering symptoms, women seek alternate therapies and develop myriad coping strategies. Among those mentioned by participants are yoga and other forms of gentle exercise, diet modifications and acupuncture. Many try herbal remedies for the first time, such as black cohosh for hot flashes and vaginal dryness, though these seem to offer mixed results. Furthermore, for black cohosh specifically, few scientific studies have been done to demonstrate the long-term effects of this herbal remedy and some suggest that it may interact with tamoxifen.

To fight chemobrain and avoid the embarrassment and frustration of forgetfulness, others develop elaborate organization systems, make lists and/or create specific places for items they otherwise easily misplace, such as keys or eyeglasses.

Bartlett, for instance, says, “I went from someone who kept phenomenal amounts of data in my head to someone who can’t get out of the house in the morning without making a list. So now I have lists for everything. Before I go to sleep, I make lists of what needs to be done. In the morning, I check the list and I cross off as I get things done.”

In addition to developing coping strategies, many women report that living with long-term symptoms has changed their outlook on life. Dana Fogel, 49, has suffered from memory loss since finishing her treatment in 1998. “I hold onto the moment because I don’t have the ability to hold onto memories,” she says.

For Karen Walter, 54, a former dancer who suffers from multiple symptoms, including fatigue and degenerative joint disease, living fully has meant developing different hobbies and slowing down. Learning to swim has been easy on her joints, and at work she delegates tasks when she can and rests when she feels particularly fatigued. “I keep in mind that this is a new place in my life, and I’ve got to figure out how to adapt to this.”

The most vital message each participant wanted to get across to other women suffering from post-treatment symptoms is the importance of self-advocacy. For many, this means joining support groups or gathering information about their symptoms.

“I did research,” says Monica Sylvas, 60, a former legal secretary. “I went to libraries, medical research libraries, hospital libraries and I interviewed doctors. I went to support groups. All of a sudden, I felt like I knew more than everyone and that I could manage my care and I could discuss my care with my doctor. That gave me a sense of having some control over the situation. It helped minimize my anxiety.”

Sylvas’ advice to others: “Go get help. Talk to other cancer survivors and don’t give up. You really have to be your own best advocate.”

Editor's Note: Names have been changed to protect the confidentiality assured to all women participating in the study.