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117Seminars in Oncology Nursing, Vol 22, No 2 (May), 2006: pp 117–125

BJECTIVES:

o offer personal and professional

erspectives on survivorship.

ATA SOURCES:

ersonal experience, publications,

overnment resources.

ONCLUSION:

hallenges experienced by the

ancer patient are influenced by

umerous factors, including age,

ype and extent of cancer, treat-

ent schedule and effects, finan-

ial well-being, access to support

nd follow-up, information needs,

nd family reactions. Challenges

re eased through a kind word

nd guidance from those whom

atients lean on the most and re-

pect, the nurse.

MPLICATIONS FOR NURSING

RACTICE:

urses play an important role in

reparing the patient and their

amilies to have realistic expecta-

ions and balance the demands

long the journey of survivorship.

From National Human Genome Re-earch Institute, National Institutes ofealth, Bethesda, MD.Jean Jenkins, PhD, RN, FAAN: Senior

linical Advisor, National Human Genomeesearch Institute, National Institutes ofealth, Bethesda, MD..Address correspondence to Jean Jen-

ins, PhD, RN, FAAN, NHGRI, Nationalnstitutes of Health, 31 Center Dr, Bldg 31,oom 4B09, Bethesda, MD 20892; E-mail:ean.Jenkins@nih.gov

2006 Elsevier Inc. All rights reserved.

Ca

749-2081/06/2202-$30.00/0oi:10.1016/j.soncn.2006.01.007

SURVIVORSHIP:FINDING A NEW

BALANCE

JEAN JENKINS

AM NORMALLY a very private person, it is often hard forme to share my feelings. So when Sharon Steingass, guesteditor of this edition of Seminars in Oncology Nursing,requested that I contribute an article about survivorshipissues I considered the possibilities. Should I share with

ou my own personal story of “survivorship”? To do that requireshat I reflect on all I’ve experienced in my life since 2001, when atge 47 I was diagnosed with non-Hodgkin’s lymphoma, which isot easy. Sometimes cancer survivors (including myself) just wanto move on and forget about it. Or, should I focus on the literaturebout survivorship with details of available resources and presenthis content more from a professional perspective? In the discus-ion that follows I have attempted to do both, because like all otherancer survivors my story involves both personal and professionalssues encountered throughout the continuum of experiencingancer. Perhaps by having both perspectives you will gain somensight about the importance you have as an oncology nurse, as aolleague, or as a friend to someone surviving cancer.I completed my PhD in 1999. As anyone who has been through

he dissertation research process can attest, it is a challengingime – intellectually, physically, and emotionally. So when Ixperienced fatigue in 2000, I attributed that energy drain toymptoms of a post-traumatic (dissertation) syndrome. I had nother symptoms. However, when I went for my routine mammo-ram it was discovered that my lymph nodes were enlarged andCT scan was recommended. To the surprise of both my physi-

ian and I, by CT a large abdominal mass was discovered. Iteemed rather ironic. I understood cancer as an oncology nurseor 25 years, but I was about to learn even more about cancerow as a patient.

CANCER SURVIVORSHIP

ancer survivorship, according to the Office of Cancer Survi-vorship (OCS) at the National Cancer Institute (NCI), begins

t the time of diagnosis and continues through the balance of

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118 J. JENKINS

is/her life (http://survivorship.cancer.gov).1 In-luded in this definition is not only the individualxperiencing the cancer, but also friends, familyembers, and caregivers. I would add to that list,

hat for some individuals (especially nurses) co-orkers are also an important part of this experi-nce. My co-workers became instrumental inelping me find information, maintain privacy,elect treatment options, and gain some control invery uncontrollable situation. Most of them un-erstood the implications of cancer and werehere for me, even when I thought I was okayrying to cope alone, as friends, as nurses, andhysicians they offered me a helping hand. I’mure that at times this experience was just asifficult for those I touched as it was for me.ancer survivorship is a topic worth exploringow because oncology nurses increasingly en-ounter one of the 9.8 million touched by theuccessful progress in cancer care. Nurses have anmportant role in preparation of the patient andheir family to have realistic expectations, and toe able to address short- and long-term needs.ssues facing those living with this chronic diseaseequire careful consideration and attention by all.

ISSUES

hile cancer is a major event in anyone’s life,it also brings with it an opportunity for

earning–learning about one’s self, about relation-hips with others, and about the importance ofamily and friends. Growth resulting from thisearning is not easy though, and those we meetlong the way can either make it easier or moreifficult. I found that the nurses and physicians Iet in the clinic were essential to my understand-

ng, coping, and being able to survive the canceriagnostic and treatment processes.

nitiationMy most recent experience was working with

ersons who had a hereditary contribution toheir family’s history of cancer. I understood thatereditary factors do increase someone’s risk forancer, such as breast-ovarian or colon canceryndromes. But I had non-Hodgkin’s lymphoma!mong the many questions asked by my son werehether or not there was a history of cancer iny family and did this increase his risk for

ancer. All I could say was that, based on today’s

nowledge, lymphoma did not appear to be a p

ancer that had a hereditary contribution to whyt occurred. But what I could explain less wellas that there are genetic changes that occur inormal cells as they progress from being benigno cancerous. I was about to learn even morebout how these genetic changes found in myymphoma cells could be used in guiding theecisions about my care.2(p60)

Often times, the newly diagnosed patient andis/her family struggle with “why me”? It is diffi-ult to identify the multiple events that may haveontributed to the genomic alterations that under-ie the initiation and progression of cancer.earching for a cause of a specific cancer is oftens individualized as the person. There are manyypes of causes–and ways to look for them–ofancer. Genetic mutations are certainly a keylayer and recently, the NCI and the Nationaluman Genome Research Institute joined to-ether to launch a collaborative effort to cataloguehe genetic changes that characterize cancerhttp://www.genome.gov/15015123). This effortay provide an effective way to identify all of the

elevant genetic changes and malfunctions thatan contribute to a large number of major types ofancer. A pilot program will begin in 2006 and willake 3 years to complete.

In addition to somatic mutations, inheritedariation also plays an important role in cancerisk. Genetic testing is an option that many fam-lies with a possible inherited predisposition toancer can now consider (http://www.genetests.rg). Persons with a strong family history mayeed further risk assessment and counseling to

dentify the value of earlier implementation ofcreening and prevention recommendations.urses should recommend to individuals and their

amilies consideration of gathering family healthistory and completing a family health portraituch as the one available from the US Surgeoneneral (http://www.hhs.gov/familyhistory). Fac-

ors suggesting a possible inherited cancer risknclude: diagnosis at an atypically young age, rareorm of cancer, unusual presentation, multiplerimary cancers, cancers associated with birthefects, patterns of cancer associated with anown cancer syndrome (ie, HNPCC or BRCA1/2)http://www.cancer.gov/cancertopics/pdq/genetics/isk-assessment-and-counseling/healthprofessional). Aecent report of findings of familial aggregation ofon-Hodgkin’s lymphoma and a possibility of in-reased risk for other cancers such as melanoma,

rostate, pancreas, and stomach cancer suggest the

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SURVIVORSHIP: FINDING A NEW BALANCE 119

eed for consideration of family history in non-odgkin’s lymphoma.3 For more information aboutancer genetics, see the textbook edited by Straussranin, Masny, and Jenkins.4

I’ve worked my whole career in a clinical on-ology setting. Could something I’d been exposedoo, such as a virus or chemotherapy drugs, haveut me at risk for my cancer? Many of my oncol-gy nurse colleagues were also being diagnosedith cancer and I wondered about the occupa-

ional exposures we had all experienced. I readbout suspected environmental contributions toymphoma development, such as pesticides, wa-er contaminants, and hormones. I’d had a hys-erectomy for fibroids – perhaps the hormoneeplacement had modified my body’s ability toespond appropriately to fight off the cancer cells.ost likely, according to the literature, my bodyad responded to an infectious agent and theells remained active rather than turning off ashey normally would. Whatever the reason(s) forhe cancer, it wasn’t something I could changeow. I had to move on from would’ve, could’ve,hould’ve, to dealing with the now.2(p64)

iagnosisThe diagnosis of my type of cancer restedithin the pathologists hands. Based on my

creening tests, I knew that I had cancer in mybdomen and throughout my lymph nodes. Buthe bone marrow results would tell me even morebout what was suspected; that I indeed hadymphoma. There are several types of lymphoma,ome with worse prognoses than others. So, Ias extremely anxious to know the bone marrow

est results.2(p60)Results indicated that I have fol-icular lymphoma (B cell).

Gene-expression profiling is a technique that isow used to decipher the biologic diversity thatften leads to clinical variation in molecular diag-osis of the type of cancer that is present.5 Biopsypecimens can be analyzed to determine specificell type (ie, diffuse histiocytic lymphoma or B-ell lymphoma) as well as to search for oncogenicvents (ie, bcl-2 translocation and c-rel amplifica-ion), which are indicative of reasons for variedreatment responsiveness and survival rates.6 Mo-ecular diagnosis of the specific histologic classifi-ation of cancer can provide guidance to bestreatment options based on histologic diagnosticategories as well as prognostic markers that in-

icate the potential outcomes for that individual. r

rognosisEach time I go in for bone marrow biopsies and

eriodically throughout the treatment regimennd follow-up, multiple research bloods arerawn. It clearly states in the informed consent Iigned that the results of these research studiesill not be given back to me. These tests are being

onducted along with other patients’ samples toetermine the correlation of gene expressioneasurements in lymphoma with clinical out-

ome. Although I recognize the preliminary sta-us of the meaning of this information, I am acientist by training and am curious as to theesults. It’s really quite fascinating, if it weren’tappening to me! 2(p62)

Disclosure of individual results of clinical re-earch is a controversial subject.7 Considerationf the meaning of the results for clinical decisions,he validity of study results, and implications forhe individual (benefit/harm) all contribute to de-isions made by study investigators about whennd what to report to study participants. Respector participants in research requesting individual-evel results is encouraged.

An article was published that reported the usef molecular features of biopsy materials to de-ermine prediction of survival in follicular lym-homa.8 Several of my friends wondered why Iould want to know this information. I felt thatcould better plan for the future if I knewhether my tumor cells had genes associatedith a poorer prognosis. I contacted the NCI

nvestigator to determine if my biopsy samplesould be analyzed using this microarray technol-gy. I was disappointed to be notified that despiteeveral attempts, they were unable to success-ully array my pretreatment biopsy sample.

reatmentHaving had the experience, as an oncology

urse, of providing information to patients aboutptions for treatment, I knew where to look forummaries of standard and research treatmentsor lymphoma (PDQ at http://www.cancer.gov). Ilso sought out a second opinion from a “lym-homa expert” to help guide my decision aboutreatment options. It became clear that standardreatment is insufficient in my case. My physi-ian told me that there is no “cure” for my can-er; it often reoccurs in 3 to 5 years. So I knewhat I had to do more than get “standard” treat-

ent. And although the side effects and cancer

esponsiveness are unknown, I decided that a

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120 J. JENKINS

linical study (http://www.clinicaltrials.gov) wasy best shot at living to see my granddaughter

row up. There was a study that included stan-ard chemotherapy up front, but then had theddition of a vaccine or placebo as the researchuestion. I was fascinated that the genetics tech-ology that I was so passionate about because of

ts great potential for improved health care in theuture was opening a treatment door for meow.2(p63) The vaccine is designed to enlist my

mmune system to attack remaining cancer cellsased on my own specific cancer cell mark-rs.9,10

ymptom ManagementIndividuals receiving cancer treatment experi-

nce a plethora of side effects. The NCI PDQatabase summarizes pathogenesis, contributingactors, assessment, and intervention recommen-ations for treatment related concerns. Table 1

ists the complications and side effects of cancerreatment, many for which the NCI provides sum-ary resource information (http://www.cancer.

TABLE 1.Complications and Side Effects of Cancer Treatment

Bone and joint painCardiopulmonary syndromesCognitive disorders and deliriumEmotional concerns*End of life issues*Endocrine impairmentFatigueFever, sweats, and hot flashesGastrointestinal complicationsHypercalcemiaLate effects of childhood cancer therapiesLearning disabilities and memory problemsLymphedemaNausea and vomitingNumbness and tinglingNutritional concernsOral complicationsPainPruritisRadiation enteritisSecondary cancersSexuality, intimacy, and reproductive issuesSleep disordersSuperior Vena Cava syndrome

*Multiple topics presented at http://www.cancer.gov/cancertopics/coping.

ov/cancertopics/coping). Oncology nurses are ex- t

ellent resources for assistance in deciding whichntervention works best for many of the commonide effects, such as nausea and vomiting. Someffects are short term, while others are experi-nced for a long time, or even experienced follow-ng cancer treatment. Genetically based interven-ions such as vaccines may produce otherymptoms such as localized injection reactionsnd immunologic type effects (fever and chills).I would arrive in clinic for chemotherapy in

omfortable clothes, with my CD player, and myavorite music. The treatment I received wasdministered in the same clinic where I sawatients. So the nurses and I worked out a plan

or me to be tucked away in a corner bed torovide me with privacy and then to receiventi-nausea medication that often put me toleep. I found that I could best tolerate the treat-ent with this routine. One nurse expressed con-

ern that I wasn’t interacting with the otheratients in the clinic. Perhaps some individualso better with such interactions; but I just wasn’tp to sharing that special day (sarcasm) everyonth with anyone else. At each visit they would

heck to see if I was experiencing any additionalide effects and assess how effective the interven-ions were at improving my quality of life.

revention of Long-Term EffectsQuality of life after cancer treatment is an im-

ortant goal, secondary only to achieving remis-ion. Research reports state that the individual’senetic make-up may play a role in aspects ofuality of life following treatment, including dis-ress, outlook, and fatigue.11 For me and manyther cancer patients, fatigue is a lingering sideffect of treatment. There are multiple contribut-ng factors to fatigue, including the disease processtself; pain or infection; disease impairment ofulmonary or neuromuscular systems; and cancerreatment and its effects (such as anemia). Someedications taken to reduce cancer treatment

ide effects can also produce fatigue. Often theastrointestinal distress is so intense that nutri-ional intake is limited or resultant metabolic dis-urbances create fatigue. Psychological distresseading to sleep disturbances or inactivity mayontribute to fatigue. I have found that my energyears down a lot quicker and the exhaustion is a

ot more intense than before having cancer. Ofourse, I have also aged during this process, sot’s inappropriate for me to blame everything on

his cancer experience!

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SURVIVORSHIP: FINDING A NEW BALANCE 121

Assessment of the contributing factors to treat-ent effects, such as fatigue, may lead to effective

nterventions. More research is recommended toalidate findings of certain genes being present inhose experiencing greater fatigue, with the goal ofurther individualizing cancer care.

Cancer survivors of greater than 5 years re-ponding to a health profile survey reported gen-rally good health.12 The sample of 3,674 womennd 2,162 men were adult cancer survivors. Over-ll, 31% felt that cancer had affected their overallealth. There was a gender difference, with menenerally reporting fewer specific problems. Age,ength of time since diagnosis, and cancer typeffected the frequency and type of health effectseported. Table 2 lists the reported long-term ef-ects, with arthritis/osteoporosis (26.4%) being the

ost frequent. As reported, memory loss becameess of a problem over time, but hearing loss andataracts became more prominent. This kind ofata provides a foundation of knowledge fromhich to determine guidelines for survivor fol-

ow-up and the design of follow-up medical healthare clinics.

ollow-UpI am still trying to survive the tentacles of this

TABLE 2.Frequency of Health Related Problems by Gender

Health Problem % All Women % All Men

Thyroid* 12.1 6.2Stroke 3.3 4.4Skin 5.3 6.9Seizures 0.6 1.2Psychological* 3.3 1.7Migraines* 4.9 1.8Lung 5.9 5.7Memory loss 8.7 7.8Liver 1.6 1.7Kidney/bladder* 9.8 14.2Heart* 13.9 17.2Hearing loss* 9.9 14.9Frequent infections* 6.8 3.9Dizziness 8.0 7.6Diabetes mellitus 8.1 8.7Circulation 10.7 10.9Cataracts* 17.4 14.1Bleeding 3.5 3.9Arthritis/osteoporosis* 32.9 15.5Abdominal pain* 7.7 4.5

*P value significant at �.0025.12

east. Every 6 months when I return to the clinic y

y blood pressure goes up, I experience moreatigue (the only symptom pre-diagnosis), and Iave multiple aches and pains that I know forure signal the return of the cancer. I know thatorrying about the cancer coming back is nor-al, but it doesn’t make it any easier. Each timego in for follow-up I fear the possibility that my

ife will be turned upside down with results of thehysical exam or CT. It really doesn’t get easiers time goes on. In fact, I think in some respectst is harder as I reach that magical time point ofaverage time to relapse.”

ealth Care SystemsOnce treatment ends, it is difficult to return to

he way it was and expectations of what is nowmportant often have changed. The contact withhe support systems found at the clinic and theoutine associated with the treatment visit is noonger present. When treatment ends it is such aelief to have accomplished that small goal, butxpectations of what is next is often guarded. Fearxists – it’s hard to return to “normal” life. Nursesan assist the individual to begin thinking aboutife beyond cancer treatment. Developing a well-ess plan is one suggestion provided in a “Facingorward Series” offered by the NCI.13 Professionalupport services may be recommended such asounseling, pain clinics, support groups, and den-ists. Often the routine maintenance of mammo-rams, eye checks, or dental care may have takenbackseat to the cancer care and will now need toe addressed. The President’s Cancer Panel, as andvisor group, has held several meetings to gathernsights about the challenges of living beyond can-er (http://pcp.cancer.gov). Topics including ac-essing relevant post-treatment information; ob-aining appropriate follow-up screening andancer care; acquiring necessary supportive ser-ices; overcoming financial and insurance-relatedarriers; and addressing cultural and languagearriers to care are addressed in an annual re-ort.14 Recommendations for addressing issuesffecting survivors across the life span are summa-ized in Table 3. Past meeting minutes as well aspcoming President Cancer Panel meeting dates,hich are open to the public, offer a rich resourcef information about survivorship at their website.

ecovery Takes TimeA quote from an NCI booklet is indicative of a

roblem many patients experience, “The values

ou grew up with may affect how you think about

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122 J. JENKINS

nd deal with cancer. Some people feel they haveo be strong and protect their friends andamilies.”13(p47)

I found myself going through the motions,hrough the biopsies, through the doctor’s ap-ointments, through the treatment. I didn’t reallyllow myself to feel the emotional side of things. Iut up a strong front that I was doing just fine.hat was how I coped best; but it didn’t reallyllow others in my life to feel like they wereeeded. They didn’t know how to help, nor couldexpress that I did indeed need their help. Once

he visible signs of cancer treatment disappear,t’s sometimes even harder for others to under-tand that residual effects still remain-for a longime.

ISSUES FACING THE SURVIVOR AND OTHERS

mploymentCancer occurring during the adult years dis-

TABRecommendations to Address Issues

1. Treatment and follow-up care informationUpon discharge from cancer treatment, provide a recordUpon discharge from cancer treatment, provide a follow-u

2. Inform patients/survivors and their caregivers about legal3. Evaluate the impact of HIPPA privacy and insurance porta4. National public education cancer-related education and in

Raise awareness of survivor experiences and capabilitiesImprove existing online resources regarding clinical trialsDevelopment of an online information resource for effectsEvaluation of the role of specialized long-term follow-up cInclude education about survivorship needs as core conte

5. Counsel survivors about psychosocial and support needsInform survivors of common psychosocial effects of cancDevelop a caregiver plan at the outset of cancer treatmenInclude psychosocial services as part of comprehensive c

6. Address fertility concernsProvide information about options for preserving fertility aProvide parents of young children diagnosed with cancerFocus research on fertility preservation optionsCoverage of fertility preservation procedures and infertility

7. Health insuranceRevive efforts to implement comprehensive health care reProvide adequate reimbursement for prostheticsProvision of coverage for psychosocial servicesProvide reimbursement for risk assessments, surveillanceEvaluate existing follow-up care clinic models

NOTE. Additional recommendations are available for childrendiagnosed as adults, and for those diagnosed as older adult

upts the survivor’s ability to carry out functions m

onsidered crucial such as family, social, andork-related responsibilities. Self esteem may beffected because of changes in the way the survi-or looks, how they feel, and their reduced abilityo keep up with daily living requirements, whichay influence if they can continue in their cur-

ent employment. Depending on the severity ofhe treatment effects, working full time may notlways be possible for the patient or their familyembers who may need to assist with transporta-

ion or care needs. Workplace discrimination haseen an issue for those whose cancer treatmentr follow-up was perceived by employers as re-uiring excessive or prolonged absences (http://cp.cancer.gov).While in treatment I was able to continueorking full time. However, I planned leave for

he day of and the day after treatment to allow medequate rest and recuperation. Having thereatments in the same hospital where I workedas also convenient for stopping to get pre-treat-

3.cting Survivors Across the Life Span

care receivedre planegulatory protectionsprovisions

ation

ancer and treatment

r health care providers

d treatment

n possible effects of treatment on pregnancy or offspringmation about the impact on fertility

tment service

other follow-up care

those diagnosed as adolescents or young adults, for thoset http://pcp.cancer.gov.

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SURVIVORSHIP: FINDING A NEW BALANCE 123

his routine continued for a year. I often had myon and his family visit with me the day afterreatment so that I had time with my new grand-aughter, Becca. Although physically exhaustednd nauseated on that day, I received enormousenewal from the love and attention of those whoeant a lot to me. Then I could return to work at

lmost full capacity. It was hard to juggle all theemands, but supportive colleagues would no-ice when I would need some extra time off andncourage me to do so. I could not have contin-ed working had I not had a sufficient leavealance, supportive colleagues, and family tossist me with balancing the demands.Employment and work-related disability were

nvestigated in a study of 1,433 adult survivors ofaried cancers.15 Survivors were at risk for disabil-ties and quitting work, even after the first year ofurvivorship. Thirteen percent of all survivors haduit working for cancer-related reasons within 4ears at diagnosis. One of five survivors reportedisabilities at follow-up (21% of all females; 16% ofll males), with half of them still working. Thoseiagnosed with blood and lymph cancer (stage IV),entral nervous system cancers, and head andeck cancers were most associated with employ-ent problems. The authors concluded that the

hallenge is to identify survivors with employmentroblems so as to better manage symptoms, reha-ilitation, and consider accommodation of disabil-ties.

ostsThe cost of survival includes both financial and

motional toll. Existing health care coverage inhe Unites States is limited not only for treatmentosts, but also for preventive care, psychosocialupport, and follow-up care. Often the individual’snsurance and employment link is a disadvantageor those unable to continue working during theirancer experience. Cancer survivors report theeed for better information about existing lawsnd regulations that may protect their employ-ent, insurance, and assets.14

I was at an advantage with the coverage ofosts for my health care. Employed as a nursefficer within the Public Health Service, I wasntitled to military health benefits. These benefitsovered my routine mammogram that led to myiagnosis and the subsequent cancer work-up.nce diagnosed, I investigated clinical trial op-

ions. All evaluations, treatment, and follow-up

isits were covered for this NCI-sponsored clini- s

al trial. So, at least for me, the financial costsave not been a concern. However, the emotionaloll is a different issue.

upportSupport comes in many forms – loved ones,

olleagues, other cancer survivors, nurses, andhysicians. Health care providers sometimes as-ume that the patient has a support system, whenor many who are older and living far away fromamily members, they may not be in the bestituation. Feelings of anger and grief (for both theurvivor and their loved ones) are natural as lossf the “old body” and sense of self have beenhanged forever. Often times people makehanges in their lives to reflect what matters mosto them now.13 That’s what happened for me asy marriage of 29 years came to an end. Al-

hough dealing with cancer can sometimes bringamilies together, at other times this experiencetresses relationships, creating even morehanges with which to cope. Many times faith ismportant to those dealing with cancer and all itrings. Spirituality is a source of strength toany, including me.

mplications for NursesChallenges experienced by the cancer patient

re influenced by numerous factors, including aget diagnosis, type and extent of the cancer, treat-ent schedule and effects, financial well-being,

ccess to support and follow-up, informationeeds, and family reactions. Many of these chal-

enges can be eased through a kind word anduidance from those that patients lean on theost and respect, the nurse.I, the patient, now became even more aware of

he importance of knowledgeable and caring healthare providers. I wanted to understand what toxpect, when the scheduled treatment would oc-ur, and who to call in an emergency. Once canceras diagnosed, the “control” of my life was put in

thers hands. I sought out information to help meain some control in my life through participationn decisions about my care.2(p65)

esearchThe OCS mission is to enhance the quality and

ength of survival of persons diagnosed with can-er. OCS conducts and supports research thatssesses and addresses the effects of cancer and itsreatment for pediatric and adult survivors. Re-

earch supported by the OCS focuses on multiple

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spects of cancer survivorship including treat-ent sequelae, health care delivery models, and

ollow-up surveillance and care (Table 4). Nurseshat focus research efforts on issues facing cancerurvivors and their families will contribute to thenowledge and ability of the individual and theiramily to consider ways to not only survive, but tohrive along this new journey of living.

esourcesA listing of post-treatment resources is available

rom multiple agencies including books, meetings,act sheets, and reports (Table 5). A resource guidef long-term survival clinics providing additional in-ormation for persons seeking follow-up care is avail-ble at http://dccps.nci.nih.gov/ocs/resources.html.he National Coalition for Cancer Survivorship alsoffers programs and resources for cancer survivorshttp://www.canceradvocacy.org).

CONCLUSION

hange is never easy. Cancer has forced meto change – the way I view myself, what I

TABLE 4.Research Categories: Survivorship Issues

Cancer communicationFamily issuesFinancial burdenHealth care delivery

AccessSurveillance

Health disparitiesInstrument developmentIntervention researchPhysical effects

Pain managementRehabilitationReproductive effectsLong-term morbiditySymptom management

Psychological/psychosocialQuality of life

alue, and how I live. Most of all it has helped me v

REFEREN

oston, MA. Jones & Bartlett; 2005.

Ht2

nderstand even more fully the importance ofveryone you encounter along life’s continuum.n days when you look and feel rotten and

omeone at the clinic front desk smiles; or thehlebotomist who goes the extra step to get youn the first stick; to the nurse who knows wheno sit with you or to just leave you alone withour music – everyone makes a difference. Iave also learned that I am never alone and that

t is okay to ask for help. Mostly, I have learnedhat there is more to life than what I had previ-usly thought was important. I still struggleaily with finding a balance between thosehings that seem important with those that trulyre, and in knowing the difference. Most of all, Iave learned that “We must be willing to let gof the life we have planned, so as to have the lifehat is waiting for us” (E.M. Forster). Thank youor being a nurse and for seeing the importancef your role in preparing the patient (me) andur families to have realistic expectations, ando improve our ability to balance the demands ofhatever confronts us along this journey of sur-

TABLE 5.Resources16

American CancerSociety

http://www.cancer.org

CancerCare http://www.cancercare.orgFertile Hope http://www.fertilehope.org/index.cfmLance Armstrong

Organizationhttp://www.laf.org

National Coalition forCancer

http://www.canceradvocacy.org

SurvivorshipNCI Cancer

Information Service1-800-4-CANCER (1-800-422-6237)

http://cancer.govNational

ComprehensiveNetwork

http://www.nccn.org

NCI Office of CancerSurvivorship

http://survivorship.cancer.gov

ivorship.

CES

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