Caring for the Life You Saved

April 15, 2015

We may find that in the case of recurrence surveillance, doing less than we now do is better. Conversely, for persistent symptoms, adoption of lifestyle behaviors by survivors, and the meeting of family needs, doing more than we do now is better.

In this issue of ONCOLOGY,[1] Drs. Denlinger and Shah address the difficult balancing act of post-surveillance testing in three common cancer survivor populations, and attempt to answer this key question: How often and how rigorously should we look for recurrences? In a world of value-based care, routine imaging and laboratory testing in the asymptomatic survivor population must have a clear mandate. Denlinger and Shah present a compelling argument that intensive post-treatment surveillance in these survivors is not always necessary.

Containment of sky-rocketing expenditures is at the forefront of health care reform. Denlinger and Shah’s careful review of beneficial surveillance strategies, with its evidence-based arguments for the elimination of unwarranted imaging and laboratory testing, is important. The article also presents an opportunity to evaluate the goals of survivorship care beyond recurrence surveillance-goals which perhaps have been missing in survivor care and which would add value. Several areas deserve consideration, including intensification of care for residual symptoms that have an impact on functioning and quality of life, survivor adoption of lifestyle behaviors that may reduce the risk of recurrence, ongoing discussion of goals of care and advance care planning, and the addressing of family needs.

When asked about their needs, survivors rate fatigue, fear of recurrence, and sleep disturbances as insufficiently addressed.[2,3] These symptoms are signs of distress, and are understandable consequences of a life-threatening diagnosis and its therapy. Survivor distress is also often caused by infertility, chemotherapy-induced peripheral neuropathy, debilitating fatigue, chronic lymphedema, or hormone deprivation. The management of these issues often requires the compassionate and multidisciplinary approach commonly used in palliative care. The life that has been saved by initial treatment must be made worth living for the survivor. As is being done with surveillance, research should continue to evaluate the therapeutic value, scalability, and cost-effectiveness of interventions for residual symptoms in survivorship, and symptom resolution should be a goal of every survivor visit.

Current survivorship guidelines address more than just surveillance strategies. They provide a resource that encompasses the range of concerns that may need to be addressed in cancer survivors. Denlinger and Shah show where value is lacking in intensive surveillance for recurrence, yet real value could be added to clinician visits during survivorship if these visits were to emphasize monitoring and reinforcing survivor behaviors that a growing evidence base now shows hold promise for reducing the risk of recurrence. While surveillance for early identification of recurrence is the current focus of care, preventive risk-reduction strategies via lifestyle change may add much more value. At least three observational studies suggest that exercise in survivorship can lead to an incredible 50% reduction in the risk of recurrence of breast[4,5] and colon cancer,[6]rivaling-but substantially less costly than-the benefit seen with adjuvant trastuzumab,[7] and with added cardiovascular benefits. Maintenance of hormonal therapy for breast cancer survivors should continue for 5 to 10 years but may cause unpleasant side effects that lead to premature discontinuation. Reinforcement of adherence behaviors is another example of an important survivor visit focus that can reduce the risk of recurrence. Evidence-based recommendations involving smoking cessation, regular exercise, avoidance of weight gain, minimization of alcohol intake, and adherence to regular health care visits are simple and completely cost-free to endorse and monitor in the survivor period.[8]

Motivating patients to adhere to beneficial lifestyle behaviors is one example of cost-effective survivorship care. Survivorship provides an additional opportunity with long-reaching effects. Any diagnosis of a serious illness provides clinicians with an opening for advance care planning discussions. Introducing advance care planning in a calm setting helps normalize the discussion[9] and encourages review of goals throughout the disease trajectory. Discussion of advance care planning is considered to be a clinical practice that is integral to high-quality cancer care,[10] and standards to help guide such discussions have recently been published.[11]

Finally, successful survivorship care should address the needs of the patient’s family. A diagnosis of cancer affects the family as well as the patient. Beside the distress that results from a family member having cancer, there may be genetic or environmental implications for family members, along with the burden of becoming a long-term caregiver. Caring for a cancer patient can exact the same physical and psychological distress as caring for a dementia patient,[12] yet these burdens are often ignored, resulting in a decline in the caregiver’s health.[13] Simply recognizing the unmet needs of family caregivers helps alleviate the survivor’s distress as well.[14,15] Once again, cost-effective measures, such as counseling family members of cancer survivors, may provide an opportunity for appropriate screening and education about risk-reduction behaviors, especially in families where environmental[16] or genetic risks[17] for the development of cancer are increased. Simple interventions include strengthening communication between family members via social media[18] and involving family members in wellness programs.[19] The value added by addressing the needs of family members of cancer survivors is understudied and an important area for further research.

Denlinger and Shah are to be commended for their efforts to provide a thorough discussion regarding appropriate surveillance testing in survivorship. Let’s continue the conversation by examining survivors’ needs more expansively, through endorsing survivorship research that also addresses palliative care, lifestyle modification, advance care planning, and family caregiver needs. We may find that in the case of recurrence surveillance, doing less than we now do is better. Conversely, for persistent symptoms, adoption of lifestyle behaviors by survivors, and the meeting of family needs, doing more than we do now is better.

Financial Disclosure:The authors have no significant financial interest in or other relationship with the manufacturer of any product or provider of any service mentioned in this article.


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15. Sklenarova H, Krümpelmann A, Haun MW, et al. When do we need to care about the caregiver? Supportive care needs, anxiety, and depression among informal caregivers of patients with cancer and cancer survivors. Cancer. 2015 Feb 11. [Epub ahead of print]

16. Cooley ME, Finn KT, Wang Q, et al. Health behaviors, readiness to change, and interest in health promotion programs among smokers with lung cancer and their family members: a pilot study. Cancer Nurs. 2013;36:145-54.

17. Howell LA, Brockman TA, Sinicrope PS, et al. Receptivity and preferences in cancer risk reduction lifestyle programs: a survey of colorectal cancer family members. J Behav Heal. 2013;2:279-90.

18. Badr H, Carmack CL, Diefenbach MA. Psychosocial interventions for patients and caregivers in the age of new communication technologies: opportunities and challenges in cancer care. J Health Commun. 2015;1-15.

19. Stoutenberg M, Sogor A, Arheart K, et al. A wellness program for cancer survivors and caregivers: developing an integrative pilot program with exercise, nutrition, and complementary medicine. J Cancer Educ. 2015 Feb 10. [Epub ahead of print]