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Originally published as JCO Early Release 10.1200/JCO.2009.22.5854 on June 29 2009 © 2009 American Society of Clinical Oncology.
A Good LifeFrom the Rocky Mountain Cancer Centers, Longmont, CO. Corresponding author: Robert E. Fisher, MD, Rocky Mountain Cancer Centers, 2030 W Mountain View Ave, Suite 210, Longmont, CO 80501; e-mail: robert.fisher{at}usoncology.com.
Many years ago, I shared in the care of an astute primary care physician who eventually died from metastatic renal cell carcinoma. He maintained his intellect and composure until the end, and spent much time thanking us for providing he and his family "a good death." Although I am sure that this physician did not originate this term, he certainly used the term before it had gained its current common use. Recently, I had the privilege to be one of a few medical oncologists at a 4-day retreat for cancer survivors: The Ninth Annual Life Beyond Cancer Retreat in Tucson, AZ, in December 2008. Having become immersed in the issues that our patients face at this conference, I realized that we as a profession should devote ourselves to assisting our patients in striving for a good life with as much relevance and purpose as we assist our terminal patients in the dying process. My current thoughts are new to a practitioner whose career started more than 20 years ago. I can recall advising patients finishing breast cancer adjuvant chemotherapy. At that point in my early career, I thought these patients would be over cancer and normal again soon after their last WBC nadir and recovery from treatment-induced alopecia. I thought surely their lives were restored and their places with family, friends, and work would become usual within only a brief period of a few weeks at most. Though my ideas about recovery were certainly naïve, I venture that few of us in our profession have fully considered the burden of survivorship that our patients face. I believe that physicians practicing medical oncology maintain a narrow view of our patients' recoveries. We view recovery from the standpoint of frequency of office visits and treatment dates. But from the patients' perspective, as active treatment ends, their cancer experience may be just beginning. I can recall many patients finishing adjuvant treatment, with its scrutiny of minor symptoms and attention to crowded treatment schedules, and then being puzzled by what happens to them next. Suddenly, the devoted attention of their physicians, oncology nurses, and other support staff disappears. On more than one occasion, patients have described this after-treatment survivorship as falling through an empty void. Why is it that we, as medical oncologists, are not there for our patients to avoid this freefall? I think this is due to our errant, excessive attention to those on treatment, defined by us as some form of intravenous therapy. Witness that the National Coalition of Cancer Survivors was founded in 1986, yet the term "survivorship" as it applies to psychosocial and long-term health issues after cancer diagnosis did not appear in a published abstract or title in Journal of Clinical Oncology until 2002. Though we as physicians may see our returning patients as the fortunate ones, we need to realize the trauma experienced by many patients in their years as cancer survivors. Our patients live with the fear of relapse and disease progression. Their cancer fears may inhibit their return to a meaningful life, let alone achievement of normalcy. Their fear of relapse may, in fact, prove more debilitating than what a state of relapse becomes to other patients. We must realize that our patients' return office visits often function to recharge them and give them security and comfort until the next office visit some months in the future. Each return visit potentially confirms the gravity of their diagnosis, connects with a memory of a difficult time in their life, and reaffirms that they are safe to continue with a redirected life. Our patients leave our offices hopeful to be reassured of their freedom from cancer's reoccurrence. Then the process of uncertainty builds again with time, as the next oncology visit approaches some months later. These and other issues of survivorship change our patients' lives forever. Just as we follow our patients diligently for disease relapse, we should use the same diligence in our encouragement of all surviving patients to resume meaningful living. Rather than assuming that our patients will return to their former lives, we should ask, "How has having cancer changed you?" This question may assist in healing and recovery. From this may come a more meaningful life that incorporates their cancer experience in their new paradigm. Though we may be concerned about negative prognostic factors associated with a given patient's cancer, each patient in remission is a long-term survivor until their cancer proves otherwise. Our patients, including those with a poor prognosis, deserve the opportunity to live beyond the constant shadow of cancer. I am reminded of the woman in her 50s with breast cancer whom I first met in 2003. With 29 positive axillary lymph nodes, I acknowledged my concerns about her prognosis at our initial consultation. As the next 6 years transpired in remission, she has received my encouragement in our follow-up visits, not a litany of pessimism. I am sure that we all have such patients in our practices. I have learned that being an oncologist is not just about giving chemotherapy. It is also about inspiring patients. Fortunately, compared with administering chemotherapy, inspiring patients is more professionally satisfying. What should be the medical oncologist's role in the follow-up of our patients for the long-term? A review of recent literature can give us some scope of the issues from both sides of the examination table. In a random sample of American Society of Clinical Oncology (ASCO) members in a 2005 survey by the ASCO Cancer Prevention Committee,1 74% of the oncologists surveyed felt that it is the role of the medical oncologist to provide follow-up care for their surviving cancer patients. However, as cited by Oeffinger et al,2 referencing a 2005 Institute of Medicine report, cancer patients are often lost to follow-up in the setting of a busy oncology practice, and alternatively, primary care physicians lack knowledge of long-term health issues in patients with prior cancer treatment. A review by Earle3 cites an example of a cancer survivorship care plan that addresses the Institute of Medicine suggestions for follow-up care. A recent patient survey revealed that cancer patients felt that their psychosocial needs were not being addressed in their medical oncologists' practices.4 Stanton5 reported that post-treatment oncology patients are more likely to find psychosocial support on their own than from their oncologists. Also, it was found that patients with cancer had the highest risk of having depressive symptoms in comparison with adults with other chronic diseases. This research also showed that oncology patients want to discuss their state of emotional well-being with their oncologists. However, they are reluctant to broach this subject unless asked by their physician. Despite this, many cancer patients develop a positive outcome from their cancer experience, improving relations with others, gaining a sense of purpose, becoming more spiritual, and developing priorities in their lives after their initial cancer treatment.5 As I have learned from the Life Beyond Cancer Retreat, our patients look to us for encouragement, hope, and direction. Our patients can achieve remarkable accomplishments as cancer survivors, and this possibility should be nurtured. Minimal efforts and an encouraging attitude on our part can yield tremendous success for an individual patient and others. Given encouragement and opportunity, many patients will channel their creative talents into survivorship and advocacy programs. Though some may not finish the programs they initiate, these programs may be a legacy championed by determined friends and family after an untimely death. I am constantly reminded in my practice of the phrase "support your local oncologist." We should encourage a two-way dialogue between our patients and ourselves as physicians, for their sake and ours. Some of the most meaningful aspects of my medical practice have been in witnessing and participating in the accomplishments, large and small, that surviving patients have achieved. As we encourage patients to activism in the name of survivorship, our patients' successes can be viewed as part of our success as physicians. There are unlimited accomplishments in the programs that our patients may initiate through their own efforts and those of others they involve. Major cancer support programs in the United States that have become household names (eg, the Lance Armstrong Foundation and the Susan G. Komen Breast Cancer Foundation) are the product of the efforts of a single cancer survivor or a single family member of a cancer patient. Though we probably will not contribute to cancer survivorship programs with equal stature as these, each one of us can inspire our patients to create and participate in programs that will positively affect society. I see the future of oncology circumscribed by clinical pathways and evidenced-based medicine. However, contributing to survivorship and to the peace of mind of our patients will not be externally regulated in our practices any time soon. Despite having cancer, our patients demonstrate their humanity through their accomplishments, and we demonstrate our humanity in our efforts to encourage those activities. Though providing a cure may be elusive to us, we should strive at least to offer our patients a good life.
The author(s) indicated no potential conflicts of interest.
This article was written in tribute to Laurie Lahr, RN, MS, who inspired the author's interest in survivorship issues, and to Marcia Donziger, whose dedication to cancer patient communication and support through MyLifeLine.org is exemplary.
Author's disclosures of potential conflicts of interest and author contributions are found at the end of this article.
1. Ganz PA: A teachable moment for oncologists: Cancer survivors, 10 million strong and growing! J Clin Oncol 23:5458–5460, 2005. 2. Oeffinger KC, McCabe MS: Models for delivering survivorship care. J Clin Oncol 24:5117–5124, 2006. 3. Earle CC: Failing to plan is planning to fail: Improving the quality of care with survivorship care plans. J Clin Oncol 24:5112–5116, 2006. 4. Hewitt ME, Bamundo A, Day R, et al: Perspectives on post-treatment cancer care: Qualitative research with survivors, nurses, and physicians. J Clin Oncol 25:2270–2273, 2007. 5. Stanton AL: Psychosocial concerns and interventions for cancer survivors. J Clin Oncol 24:5132–5137, 2006. Submitted February 18, 2009; accepted March 30, 2009.
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Copyright © 2009 by the American Society of Clinical Oncology, Online ISSN: 1527-7755. Print ISSN: 0732-183X
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