Twenty eight years ago this past July, a brief three-page article was published in the New England Journal of Medicine that forever changed the way we view and address the needs of those both in treatment for cancer and beyond that point. The author, Dr. Fitzhugh Mullan, set-off a series of events that are still in motion today. By sharing his experience with diagnosis, treatment, and “seasons” of survival, he verbalized in an international public forum the problems being faced by survivors.(1) Thus began our idea of “survivorship,” one that plays a growing role in oncology as the numbers of cancer survivors in the United States reach new heights. As of January 1, 2012, there were 13.7 million cancer survivors living in the United States—this is up 3.4 fold from 1975.(2) Twenty two percent of these are breast cancer survivors, and forty percent are 10 or more years post-diagnosis. The number of cancer survivors is projected to approach 18 million by 2022, with the largest increase among people who are 15 or more years post-diagnosis. We have come a tremendous way from July of 1985 when Dr. Mullan first named the phenomenon of survivorship, and yet we have a tremendous journey in front of us. Only by understanding the concept of survivorship and its needs—both met and unmet by the current state of affairs—can we fully appreciate the continuing needs of survivors and the challenge of how to continue to address them in the best manner.
Navigating Potholes and Roadblocks
With any road trip, there are bumps in the road, diversions, roadblocks, and potholes. For those journeying through a cancer diagnosis and treatment, and into long-term survivorship, this is no different. While in the diagnosis and treatment phases, many individuals feel more directed and supported—the path is clear, with many medical professionals (physicians, nurses, and others) pointing the way and discussing the possible routes, even helping to negotiate various perils, like chemotherapy and radiation side effects. However, with the completion of treatment and the transition into follow up care, come a whole new set of issues, often without the immediate access to support to which patients may have grown accustomed.(3) This can include higher levels of distress, caused by long term or late term side effects, or fear of recurrence, among other symptoms.(3,4,5,6) Overall, one third to one half of women with breast cancer experience psychosocial distress.(7) While some individuals may negotiate their way through to survivorship while encountering minimal road hazards, a plethora of issues, both physiological and psychosocial, can affect cancer survivors. Moreover, the very treatments that help save lives can create quality of life issues such as fatigue and pain, fertility and reproductive issues, body image and sexual functioning issues, lymphedema, and cognitive difficulties. (8,9,10,11,12,13,14) Expectations of a return to normal after treatment can cause difficulties in survivors’ relationships with partners, friends and families.(15) Difficulties with insurance, finances, and employment also exist.(7) Lastly, depressed mood and anxiety, particularly fear of recurrence, is prevalent for many survivors.(5,6,16)
From Paving Their Own Road to Having a Customized Itinerary
Dr. Mullan noted in his article a void for services for those in “extended survival” that was only beginning to be filled by emotional support groups.(1) These days there are a plethora of services that have been shown in the peer review literature to be effective for survivors to address the issues they encounter. Emotional and psychoeducational support groups exist, and have significant benefits for participants. (17,18,19,20,21) Additionally, a number of mental health professionals—psychologists, marriage and family therapists, clinical social workers—offer individual, group, or couples/family therapy to help those with relationship or communication difficulties, anxiety, depression, and many other issues survivors may be struggling with.(22,23) Instruction in modalities such as Mindfulness Based Stress Reduction and Guided Imagery can help individuals cope with stress, anxiety, depression, fatigue and chronic pain.(17,24,25,26) Neuropsychological assessment, cognitive rehabilitation programs, and individual treatment with psychologists exist to address cognitive difficulties. (27) Exercise programs and nutrition workshops are also available for survivors to promote and aid in health behavior change.(28) Specialists, in the forms of physicians, physical therapists, and others, can help address lymphedema, pain, sexual dysfunction and reproductive issues. This gives an idea of the number and scope of available resources and services for survivors, but is by no means an exhaustive list.
The options are many and confusing, and that is without including many other complementary and alternative treatments that may not have been validated in the literature thus far. This can make navigating the programs and services extremely difficult for survivors. They may not know what is out there, or how to find or access these services. Many may be overwhelmed by the number of options, and not be able to decide or prioritize what would be best for their individual needs. Others may need assistance or support with following through on lifestyle or behavior changes after initiating them through a program or on their own.
Here enters the new phase in survivorship interventions—Survivorship care plans and interdisciplinary programs aimed at addressing survivors’ needs. Survivorship care plans are a recent development that have been discussed in the literature, and implemented for survivors. A survivorship plan is created when a survivor working in conjunction with a medical professional lays out a plan for addressing medical (continued screening, managing treatment related side effects) and health behavior (nutrition, exercise) needs for the future (as an example, see Haq et al., 2013). What is missing from this, however, are other disciplines to address psychosocial issues in survivorship, as well as coordination and collaboration of care across all disciplines. We have already seen that integrated or multidisciplinary care can make a significant difference in patients’ lives who are struggling with chronic pain, diabetes, and cardiopulmonary issues, to name some of the domains where this has already been implemented.(29,30 )This is where we need to direct our efforts in order to provide the best care possible specifically for those living after cancer.
This is an exciting time in the history of cancer diagnosis and treatment, and one in which organizations that can provide coordinated services, like Breast Cancer Connections, will fill an important and growing need for survivors. We are speeding towards vast improvements in survivorship care that have the potential to not only increase the quality of life of survivors, but aid them in truly thriving after their journey through cancer.
- Cancer Survivor Toolbox: National Coalition for Cancer Survivorship
- Survivorship-Living With and Beyond Cancer, National Cancer Institute
- American Cancer Society
Survivorship Care Plans:
Your Community Resource for Information & Support
Breast Cancer Connections’ Programs and Services
Helpline: (650) 326-6686
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2. de Moor JS, Mariotto AB, Parry C, Alfano CM et al. Cancer survivors in the United States: Prevalence across the survivorship trajectory and implications for care. Cancer Epidemiol Biomarkers Prev 2013; 22(4): 561-70
3. Lethborg CE, Kissane D, Burns WI, et al. “Cast Adrift”: The experience of completing treatment among women with early stage breast cancer. J Psychosocial
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6. Koch L, Jansen L, Brenner H, Arndt V. Fear of recurrence and disease progression in long term cancer survivors—a systematic review of quantitative studies. Psychooncology 2013;22(1):1-11
7. Knobf MT. Psychosocial responses in breast cancer survivors. Seminars in Oncology Nursing 2007; 23(1): 71-83
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9. Reinertsen SV, Cvancarova M, Loge JH, Edvardsen H, Wist E, Fossa SD. Predictors and course of chronic fatigue in long-term breast cancer survivors. J Cancer Surviv. 2010;4(4):405-414
10. Bower JE, Ganz PA, Desmond KA, Rowland JH, Meyerowitz BE, Belin TR. Fatigue in breast cancer survivors: Occurrence, correlates and impact on quality of life. J Clin Oncol.2000;18(4):743-753
11. Minton O and Stone P. How common is fatigue in diseasefree breast cancer survivors? A systematic review of the literature. Breast Cancer Res Treat 2008;112(1):5-13
12. Helms RL, O’Hea EL, Corso M. Body image issues in women with breast cancer. Psychology, Health and Medicine 2008;13(3):313-325
13. Park JH, Lee WH, Chung HS. Incidence and risk factors of breast cancer lymphoedema. J. Clin Nurs. 2008;17(11):1450-1459