A Good Life
Robert E. Fisher
From the Rocky Mountain Cancer
Centers, Longmont, CO.
Submitted February 18, 2009; accepted
March 30, 2009; published online
ahead of print at www.jco.org on June
29, 2009.
Author’s disclosures of potential con-
flicts of interest and author contribu-
tions are found at the end of this
article.
Journal of clinical Oncology
the art of oncolgy
whwn the tumor is not the target
Corresponding author: Robert E. Fisher,
MD, Rocky Mountain Cancer Centers,
2030 W Mountain View Ave, Suite 210,
Longmont, CO 80501; e-mail: robert
.fisher@usoncology.com.
© 2009 by American Society of Clinical
Oncology
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 com-
mon 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 profen
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 ad-
juvant 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 alope-
cia. 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 fre-
quency 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 Co-
alition 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 return-
ing 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 nor-
malcy. Their fear of relapse may, in fact, prove
more debilitating than what a state of relapse be-
comes 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 redi-
rected life. Our patients leave our offices hopeful to
be reassured of their freedom from cancer’s reoccur-
rence. 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 pa-
tients diligently for disease relapse, we should use the
same diligence in our encouragement of all surviv-
ing 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 meaning-
ful life that incorporates their cancer experience in
their new paradigm.
Though we may be concerned about negative
prognostic factors associated with a given pa-
tient’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 re-
minded 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 chem-
otherapy, 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 Earle (3) 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 oncolo-
gists’ practices(4) Stanton(5) reported that post-treatment oncology pa-
tients 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.
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 en-
couraging 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 encour-
age 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 survivor-
ship 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 survivor-
ship 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.
AUTHOR’S DISCLOSURES OF POTENTIAL CONFLICTS OF INTEREST
The author(s) indicated no potential conflicts of interest.
REFERENCES
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
■ ■ ■
Acknowledgment
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.
Robert E. Fisher
2 © 2009 by American Society of Clinical Oncology JOURNAL OF CLINICAL ONCOLOGY
Copyright © 2009 by the American Society of Clinical Oncology. All rights reserved.
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:::::: Creato il : 21/07/2009 da Magarotto Roberto :::::: modificato il : 25/10/2009 da Magarotto Roberto ::::::