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Adjuvant Chemotherapy For Women With Young Children: Our Patients as Parents

From the Division of Medical Oncology, Dalhousie University, Queen Elizabeth II Health Sciences Center, Halifax, Nova Scotia, Canada.

Address reprint requests to Daniel Rayson, MD, FRCP(C), Division of Medical Oncology, Dalhousie University, Queen Elizabeth II Health Sciences Center, 1278 Tower Rd, Halifax, Nova Scotia, Canada B3H 2Y9; email ccdr{at}qe2-hsc.ns.ca

THE CASE

A 32-YEAR-OLD woman undergoes a modified radical mastectomy for a 3.2-cm breast cancer with four involved axillary lymph nodes. Her estrogen/progesterone receptor status is negative. She is married and has four children, ages 2, 4, 8, and 12 years old. Her husband is a salesperson for a major computer company and travels frequently. Her only sister lives in another country and her husband’s family lives in another state. She has been the major caregiver for her children and has managed with essentially no outside support. After a thorough discussion of risks and benefits, she is willing to accept the prospect of chemotherapy but is feeling overwhelmed by the logistics of treatment. Additionally, she is worried about potential toxicities and the impact these may have on her ability to care for her children. She asks, ‘How am I going to do all this and still take care of my children?‘

Adjuvant chemotherapy for premenopausal breast cancer is notable for the fact that so many women are still in their childbearing years and are often the major, or only, source of care for their children still living at home. Issues relating to treatment toxicities and logistics are often framed within the broader context of being a parent and caregiver. Quality of life during therapy may be significantly influenced by ongoing parenting responsibilities. For many, identification of inadequate financial, social, spiritual, and/or spousal support results in prompt referral to a multidisciplinary cancer support team. Interdisciplinary consultation with oncology nurses, social workers, psychologists, and clergy can be critical in assisting with the impact of diagnosis and treatment. Patient support groups are also potentially valuable sources of support. For some patients, however, direct contact with the medical oncologist remains the major source of treatment information and support. For those women caring for children, dealing with the physical consequences of systemic treatment can be assisted by clear explanation, proactive preparation, and ongoing re-evaluation and support. Clinic visits during therapy are important opportunities for the oncologist to have a positive impact on a patient’s treatment experience, and the role of the physician should not be underestimated. Taking advantage of these opportunities may result in improved patient coping, lessened family disruption, and a more rewarding experience for all involved.

SPECIFIC TOXICITIES
Fatigue Cumulative fatigue is a universal sequelae of most adjuvant chemotherapeutic programs. Our patient, already stretched to her limit caring for children at home, may find it increasingly difficult to provide the same level of care and participation during therapy. Her partner may also be unprepared to face the responsibility of becoming a primary caregiver. Encouraging them to anticipate a need to broaden their support network early on may help to prevent crisis situations from developing when problems arise unexpectedly. Extended family members, friends, neighbors, teachers, coaches, and clergy can all be involved in extending the immediate social and childcare network available to the family during treatment. Members of the support network may also help monitor children’s coping skills and identify their unmet needs. Patients who work outside the home should be encouraged to address schedule flexibility with supervisors before chemotherapy begins so that changes can be made when needed. Oncologists should point out that work hours and job responsibilities can usually be increased should treatment be well tolerated, but the converse may be more difficult. Ongoing reassessment of the patient’s fatigue and of her family’s support network during therapy may further help to improve coping and to minimize family disruption. Aggressive management of other chemotherapeutic toxicities may help to minimize fatigue. Depression and pain may be the strongest predictors of posttreatment fatigue and should be addressed early. Finally, patients can be reassured that most do not suffer chronic symptoms.¹

Changes to Physical Appearance Changes in physical appearance, including alopecia, pallor, and weight gain, may raise concerns as to how the children will deal with their mother’s treatment. Cutting long hair before chemotherapy, as well as early encouragement and referral for wig fittings, may help. To minimize their impact, she should be encouraged to discuss the anticipated physical changes with her children, as well as their gradual resolution once therapy is completed. Children can also be included in the selection of wigs, hats, or scarves to help them become familiar with these changes and encourage their participation in the treatment experience. Early referral to a ‘Look Good, Feel Better‘ program may also help for those interested.

Nausea and Vomiting Concerns regarding nausea and vomiting may be partly allayed by explaining the relatively limited time period over which these symptoms usually arise. The improved control afforded by newer antiemetic regimens should be emphasized as well. Telling patients that they should not expect to be sick "all the time" may help to lessen anxiety over coping with ongoing parenting issues during treatment. This can be paired with communicating that many toxicities, including nausea, vomiting, mucositis, and bowel changes, have a rhythm in time of onset and duration. Emphasizing that this rhythm often becomes increasingly predictable with each treatment cycle may help our patient and her family prepare for the "bad days."

Fever and Infection Unrealistic fears of fever and infection during chemotherapy may lead to withdrawal from parental activity and unnecessary disruptions in family routine. Clear explanations with regard to the relatively low incidence of febrile neutropenia may partly alleviate these fears. It is also important to explain that the source of these febrile episodes is generally the patient’s own bacteria and not something that she would catch from her children or their friends. Patients can be reassured that they do not need to disengage from family activities because of fears of infection during chemotherapy.

Transient Toxicity v Progressive Disease: The Child’s Perspective
Depending on interactions with classmates or others, children may view cancer as always leading to irreversible progression toward sickness and eventual death. Previous family exposure to others with cancer should be explored. Chemotherapeutic toxicities may be interpreted as part of the same symptomatology that occurred to a classmate’s grandmother before death from acute leukemia. The misinterpretation of transient symptoms during adjuvant therapy within the broader context of a generic diagnosis of cancer may lead to significant childhood anxiety and fears of loss. The expected resolution of most toxicities and the ultimate goal of increasing the chance of being cured should be addressed with the entire family. It is important to communicate realistic optimism. The adjuvant setting should be clearly contrasted with other, more desperate situations which the patient and her family may have had to confront in the past. The patient may wish to plan a visit to her child’s classroom or daycare center to help demystify her experience for classmates and teachers and to thereby further strengthen her child’s social support network.

Childhood distress may not always be recognized by parents. Routine issues and problems arising in children’s lives may become magnified due to the heightened emotional milieu engendered by chemotherapy and a cancer diagnosis. Responses to disruptions in routine can be greatly influenced by developmental level. Teenagers are often very aware of body image and imitate others as they strive to develop as individuals. Toddlers and younger children are more focused on day-to-day routine and may have the most difficulty in adjusting to changes in mealtime and activity schedules. Educating parents about how their children may respond to the side effects brought on by treatment may help them to anticipate the emotional and behavioral changes that can arise.^2,3

Encouraging participation of the children in clinic visits may be beneficial. Meeting the people involved with their mother’s care, touching the machines, and seeing the medicines may help to personalize the experience and minimize imaginary evils. The anxiety of the unknown may be reduced, and the burden faced by the spouse in terms of explanations may be lessened, by encouraging inclusion of the children in clinic visits when appropriate.

The potential toxicities of adjuvant systemic treatment pose a real threat to the parenting roles of women with young families. Many of these issues may be addressed by a number of cancer care professionals, including oncology nurses and social workers, among others. The broad range of supportive services available to patients should be emphasized and their use encouraged. Dispelling some of the fears surrounding the potential toxicities of adjuvant chemotherapy, however, is rightly within the domain of the treating oncologist and should not be totally delegated. Many anxieties can be relieved if addressed early in the course of therapy. A list of potential toxicities can be accompanied by realistic reassurances that include the entire family. Relating specific toxicities to their potential impact on parenting roles may help prevent sudden crises. Ongoing re-assessment of family coping and dynamics during chemotherapy may help to prompt referral to the full range of cancer support services, if needed. Encouraging proactive preparation and discussion for patients and their families may allay some of the fears prior to treatment and may facilitate adjustment. Doing so may help life resume as normally as possible after therapy by minimizing long-term family consequences of systemic treatment.

REFERENCES

1. Bower JE, Ganz PA, Desmond KA, et al: Fatigue in breast cancer survivors: Occurrence, correlates, and impact on quality of life. J Clin Oncol 18: 743-753, 2000[Abstract/Free Full Text]

2. Welch AS, Wadsworth ME, Compas BE: Adjustment of children and adolescents to parental cancer. Cancer 77: 1409-1418, 1996[Medline]

3. Hilton BA, Elfert H: Children’s experiences with mothers’ early breast cancer. Cancer Pract 4: 96-104, 1996[Medline]

COMMENTARY
Having been diagnosed with primary breast cancer twice, first at age 43 and with a young family myself, I felt a close feeling of kinship to the described patient. A cancer diagnosis often mantles patients with a sense of isolation, as though they have been singled out from their fellow humankind. Couple this with a geographic isolation from the extended family, then further link it with high parental responsibilities, and the feeling of isolation blooms into an understandable sense of being overwhelmed.

To be sure, cancer is not a day at the beach for anyone. Each patient population has its own problems extraneous to the disease but singular to its nature and stage of life.

With the onset of cancer, circumstances or factors that were easily—or barely—managed before swiftly assume a wholly different complexion.

Dr Rayson has illuminated, particularly well, the distinctive landscape facing the patient who has a young and active family. Today’s mobile society only deepens the crevices in the terrain of this landscape. For help, the patient must explore every avenue she has, including relationships developed at church and through organizations to which she and/or her spouse belong.

Dr Rayson rightly points out the active role the oncologist should take in explaining the effects of chemotherapeutic agents, their varying degrees, and some of the paths open to the patient in this particular situation. The wisdom of an ongoing evaluation of family dynamics cannot be overestimated. Lastly, a call to the American Cancer Society may reap further sources unique to the patient’s area.

Shirley Ruedy

Author, "Cancer Update" column

The Gazette

Cedar Rapids, IA

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