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Life After Breast Cancer

From the Beth Israel Deaconess Medical Center, Boston, MA

Address reprint requests to Hester Hill Schnipper, LICSW, BCD, Beth Israel Deaconess Medical Center, 330 Brookline Ave, Boston, MA 02215; email: hhill{at}caregroup.harvard.edu

HERE’S THE CASE

SHRUGGING OFF her mink coat, Meredith Powers settled into the comfortable chair in my office. A 40-year-old single woman, she had completed her active treatment for stage II breast cancer 3 months earlier. Through the months of surgery, chemotherapy, and radiation, she had maintained most of her normal life routines and insisted that breast cancer was a disruption that could be managed. To her astonishment, she now found herself overwhelmed with emotions and unable to function. She called her medical oncologist when she could barely get out of bed in the morning and found herself weeping uncontrollably. As she explained that she had never before felt so out of control and that she was "baffled" by her feelings, she began to cry.

"Am I crazy?" she asked me.

As we began to talk, it was clear that she was struggling with many problems that were new to her and that were directly related to her diagnosis and treatment. She was exhausted and very frustrated with her diminished level of energy. She was angry with many of her friends and worried about being a burden to her family. She was unhappy with her body and the changes due to her cancer; she hated waiting for her hair to grow and felt "fat and ugly." She worried about her performance at work and her limited options considering a career move. She wanted her old life back and was starting to understand that was impossible.

For more than 20 years, I have been an oncology social worker, working primarily with women who have breast cancer. For the past 8 years, I, too, have been a woman diagnosed with this illness and have been transformed as my life’s work has become my life. Working daily with women who are struggling with the same issues that confront me, I have been challenged to focus my attention and my efforts on understanding and ameliorating the issues of breast cancer survivorship.

There are more than 2 million breast cancer survivors in the United States and many millions more worldwide. As early detection and more effective treatments secure long-term survival for more and more women, the physical and emotional impact of this diagnosis and its treatments must be addressed. It is no longer enough, although it is certainly important, to cure the cancer. The lifelong consequences of breast cancer treatment need to be recognized, addressed, and treated so women can enjoy the lives they go on to live. It is vital that physicians and other oncology caregivers recognize this reality and prepare their patients for the posttreatment period with the same detail, empathy, and attention that was given to earlier explanations of diagnosis and treatment planning.

The crisis of breast cancer does not abate with the final chemotherapy or radiation treatments. Indeed, in many ways, the real crisis is just beginning. How do you learn to live with the sword of Damocles ever dangling? How do you come to terms with the changes in your body as well as the changes in your perspective? How do you manage the changed relationships and the intense emotions that continue into the future? These are questions with which the patient will have to struggle, as life is slowly reclaimed. Recognizing that there are existential issues that must be examined by each of us in our own hearts, there are predictable problems in many other areas that can be addressed by caregivers.

The most important facts to be given to all women as they near the end of their active treatment are that the recovery process is slow, that many find it emotionally more challenging than the months of treatment, and that they should be prepared for some days of worry, sadness, frustration, and anger. A good rule of thumb is that recovery will take as long as the total duration of treatment, counting from the day of diagnosis until the day of the final radiation or chemotherapy treatment. The issues of life before cancer will be waiting; cancer does not make other troubles disappear. It is likely that tolerance for these issues will be more limited and that patients will experience a sense of being out of sync with many friends who imagine that the cancer experience is over.

SHORT- AND LONG-TERM PHYSICAL AND MENTAL CHANGES
As more women are surviving breast cancer, attention is being paid to the physical sequelae of radiation and chemotherapy treatments. Common complaints include fatigue and low energy that may last for months. Muscle stiffness, joint pain, and general aches and pains are inevitably accompanied by fear that they signal a recurrence. Even the specific and relatively minor aches and pains directly related to treatment (eg, transient shooting pains in the breast, arm, and hand or chronic chest tightness or even pain after breast reconstruction) may be interpreted with anxiety about their meaning.

There are widely varying estimates that between 5% and 33% of women who have breast surgery eventually, months or years later, develop lymphedema. Lymphedema is uncomfortable and, depending on its degree, can also be quite unsightly. Because there is no real cure, it is extremely important that physicians educate their breast cancer patients of the guidelines to minimize the risk. Women need to be reminded that these rules need to be followed for the rest of their lives. Because women remain more vulnerable to infection on the affected arm, physicians should also address the signs of infection and the need to quickly seek medical attention should it occur.

Some women are unhappy with their changed bodies and feel that they have aged precipitously. Surgical scars and changed breasts, especially, but not only, for women who have had mastectomies, can be accompanied by weight gain, hair changes, and subtle changes in skin tone, texture, and even color. Women speak of having to adapt to a new physical sense of self as well as a new sense of emotional vulnerability.

Cognitive changes after chemotherapy have recently been documented and have proven that "chemo brain" does exist! Tim A. Ahles, a psychologist, presented a study at an American Cancer Society meeting in March 2000 that was conducted at the Dartmouth Medical School in Hanover, New Hampshire. Overall, individuals who had received chemotherapy, in nine areas of cognitive functioning, scored significantly worse than a similar group of women who had not had chemotherapy. These differences lasted up to 10 years after the completion of treatment. Many women experience a general blunting of mental acuity, a certain fuzziness with quantitative thinking, and trouble with short-term memory and word finding. These deficits appear to improve slowly, but may never disappear. It is impossible to differentiate sharply between changes caused by menopause and diminished estrogen, by stress and psychological trauma and by the chemotherapy drugs themselves. Whatever the absolute cause, the cognitive changes are real and distressing. It is reassuring for women to be told that these changes are normal and likely will improve.

There is the rare but devastating possibility of a second cancer caused by the first treatment. There is the possibility of organ damage caused by chemotherapy agents or radiation therapy. Fortunately, most women are very unlikely to have to face these potentially life-threatening aftereffects. Most women, however, will have to contend with life-changing effects of their treatments, and most women are unhappily surprised by this reality.

MENOPAUSE AND SEXUAL CHANGES
Even women who had not planned to have more children find it distressing to have an acute menopause due to chemotherapy. Younger women feel suddenly older and saddened by one more way of feeling less womanly. The hot flashes, mood swings, and sexual changes can seem even more troublesome in the context of living with breast cancer. It is relieving to women to be reassured that the lowered (or vanished) libido and diminished responsiveness they feel are normal and likely to improve somewhat over time. In the early days of living with breast cancer, sexuality may seem less important to the woman, her partner, and certainly her doctors. It is ironic that the wish for intimacy and loving may increase during treatment while the desire for sex diminishes. However, as time passes, both sexuality and intimacy regain importance and it is unfortunate that few caregivers address sexuality with their breast cancer patients. There are strategies and products that can help and women should routinely be asked if they would like to speak further about these issues. If a physician does not feel comfortable discussing issues of sexuality, the patient could be referred to an oncology social worker or another therapist who is more at ease with this subject. By not dealing with sexuality, a physician may be unconsciously implying that the breast cancer survivor is less womanly and desirable than she was, or that these are not topics of importance. Both ideas are wrong.

INFERTILITY
The impact of breast cancer may be the most painful for younger women who had not yet completed their families. Grieving for what will never be can be just as intense as grieving for what has been lost. Certainly there are women who are able to achieve healthy pregnancies and healthy babies after breast cancer, but many others cannot do so, and any survivor contemplating pregnancy must also confront the realities of her possibly compromised life expectancy. The permanent loss of menses and, therefore, of traditional conception options is frequently cited as one of the most difficult issues for younger women. Although there may be other ways to build a family, being forced to consider alternatives to biologic motherhood can be one more devastating force of breast cancer.

ECONOMIC EFFECTS AND PROFESSIONAL ISSUES
We all have economic realities in our lives, and cancer can cause financial stress. In the acute phases, there may be lost income owing to missed work time or a smaller disability check. There likely have been additional expenses related to noncovered medical bills, childcare, transportation, or more take-out food. There is the well-known phenomenon of "retail therapy" that can result in large credit card bills. There may also be long-term financial implications. Thanks to the Americans With Disabilities Act, it is illegal to discriminate against someone at work because of cancer or another disability. The practical reality, however, is that it is almost impossible to prove that a missed promotion or denied new position is due to a cancer history.

Medical insurance may he harder to obtain and its availability as a benefit may also limit career choices. Cancer survivors often cannot purchase private disability and life insurance, although they may still be available as a group benefit. Unless a sound estate plan was already in place before diagnosis, it is difficult to secure the building blocks of financial planning after cancer. In this instance, an older person may be in a better position than a young parent who has been concentrating on building a life rather than planning for the future.

Having cancer causes anyone to examine her life and to think carefully about priorities and time. Many women decide that their work life is less important than it was and some choose to reduce their professional responsibilities. Others, however, feel that time may be more limited and thus they may push even harder to achieve goals. The central truth is that the diagnosis of cancer may impact a woman’s professional life and that it is helpful to acknowledge this and remind her that there are lawyers, career consultants, financial planners, and others who can be helpful, if necessary.

INTERPERSONAL RELATIONSHIPS
It is an unfortunate reality that having cancer can change relationships. Its impact on family and friends cannot be overestimated. It is likely that some friendships, even old ones, may be lost due to this stress, while others will be forged and strengthened. A common complaint of survivors is the apparent belief of those around them that, once the last treatment is over, the cancer is over. Family, friends et al may expect an immediate return to full family and work responsibilities and not appreciate the lingering fatigue. They are unlikely to understand, or to want to understand, the existential dread that remains and the hard facts of uncertainty. Many women find themselves angered and saddened by their friends’ apparent insensitivity. It is helpful to suggest that, to the extent that they are comfortable doing so, they educate their friends about the natural history and uncertainties of breast cancer. Their friends may still not fully understand the anxiety, but they will likely be more appreciative of the struggle.

Husbands and partners are relieved that the treatment is done and may likely be exhausted by the extra roles they have assumed. They worry about their wives’ possible deaths and how they would manage alone. They may well have tried to protect their spouses and not expressed these fears, and their wives may have interpreted this silence as indifference or misunderstanding. Many couples need time and, sometimes, help to find their way back to one another and to find the separate but parallel paths that continue together on the journey of life.

Children generally resume their normal routines and their natural styles long before the end of treatment. I have been part of a decade-long study of the impact of a mother’s breast cancer diagnosis on her children. Over and over again, we have found that giving children age-appropriate information and making it possible for them to continue their usual schedules make their adjustment easier. Adult children may well be served by being educated about their mother’s prognosis and fears. Younger children require more concrete information about the impact on their immediate needs and may need reassurance that "someone will always take care of them." If the cancer should return, there will be time to deal with the painful realities. Worry during the period of recovery and, hopefully, continued good health is the job of the adults in the family, not of the children.

Single women face special challenges after breast cancer. It is never easy dating and certainly breast cancer does not make it easier. Women can be reassured of one solid truth: that any partner worth having will not be scared away by her illness. It always takes courage to take the risk to meet, know, and love someone. Now it may take even more. It can be especially helpful for single women to find and talk with others who are dealing with similar concerns. Referring women to one another can be the most helpful intervention that can be offered.

In my practice, I facilitate a number of support groups. It is striking that more women seek a group after their breast cancer treatment than at the time of diagnosis or during chemotherapy or radiation. Once the physical battle is over, the psychological struggle intensifies. It is so important that women feel supported in this work and understand that their feelings are normal and appropriate. Finding others who share the experience can be enormously reassuring and empowering. Of course not every woman is interested in healing in the company of others; some women find other ways to rebuild and to reclaim their lives as they adapt to a "new normal."

The challenges of survivorship are many. More than anything else, it is the searing recognition of mortality that changes everything. From this moment forward, all of life will be viewed through a double lens as we appreciate the possibilities of both a long life and a greatly abbreviated one. This dual view may actually, over time, enrich our lives. We make a conscious and willing choice, each of us living with cancer, to go on, to take and to appreciate the darkness as well as the sunlight. We hold dear the night as well as the morning.

HELPFUL RESOURCES

• The Association of Oncology Social Work (AOSW) can make referrals to an experienced oncology social worker for psychological support services. Telephone: (847) 375-4721; Web site: www.aosw.org
  
• The Susan G. Komen Breast Cancer Foundation has many materials and a hotline for individual questions. Telephone: (800) I’M AWARE (462-9273); Web site: www.komen.org
  
• The National Alliance of Breast Cancer Foundations (NABCO) is a resource for information and materials including an extensive resource list. Telephone: (888) 80-NABCO (806-2226); Web site: www.nabco.org
  
• The National Coalition for Cancer Survivorship (NCCS) has information about advocacy, legal, employment, and insurance issues. Telephone: (877) 622-7937; Web site: www.cansearch.org
  

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