This document discusses care of cancer survivors and outlines the following key points in 3 sentences: 1) Approximately 3% of the population are cancer survivors, with many being elderly and having multiple comorbidities. 2) Both cancer-related and general medical needs must be addressed in cancer survivors, including surveillance for recurrence, late effects of treatment, and new primary cancers as well as screening and management of comorbidities. 3) The role of primary care physicians in providing ongoing care for cancer survivors along with survivorship care plans is reviewed.

1. Care of the Cancer Survivor
Eva Grunfeld, MD, DPhil, FCFP
Ontario Institute for Cancer Research, and
Dept of Family and Community Medicine,
University of Toronto

2. No conflicts of interest

3. Objectives of the Presentation
1. Definition and epidemiology of cancer survivors
2. Overview of cancer-related healthcare needs of
cancer survivors
3. Overview of general medical and preventive
healthcare needs of cancer survivors.
4. Review the role of PCPs and survivorship care
plans
5. Conclusions

4. Objectives of the Presentation
1. Definition and epidemiology of cancer survivors
2. Overview of cancer-related care needs of cancer
survivors
3. Overview of general medical and preventive care
needs of cancer survivors.
4. Review the role of PCP and survivorship care
plans
5. Conclusions

5. Definitions of Survivorship
 From the time of diagnosis through the
remaining years of life.
National Action Plan for Cancer Survivorship,
Centers for Disease Control and Lance Armstrong Foundation, USA, 2004
versus
 The period following first diagnosis and
treatment and prior to the development of a
recurrence of cancer or death.
Source: From Cancer Patient to Cancer Survivor,
Institute of Medicine, USA, 2006

6. Cancer Care Trajectory
Source: IOM, 2006

7. Source: J. Natl. Cancer Inst. 2008 100:236; doi:10.1093/jnci/djn018

8. Breast Cancer:
Conditional relative survival
Source: IOM Report, 2006

9. Colorectal Cancer:
Conditional relative survival
Source: IOM Report, 2006

10. Summary
 50% of cancer patients will be long-term survivors
 Breast and colorectal are among the most prevalent cancers
⇒Between 60 to 80% are long-term survivors
 approximately 3% of the population are cancer survivors
 most are elderly and most have multiple comorbidities

11. Objectives of the Presentation
1. Definition and epidemiology of cancer survivors
2. Overview of cancer-related healthcare needs of
cancer survivors (focus on breast and colorectal
cancers)
3. Overview of general medical and preventive
healthcare needs of cancer survivors.
4. Review the role of PCP and survivorship care
plans
5. Conclusions

12. Case : Breast Cancer
Your patient is a 48 y.o. with T2N1M0 carcinoma of the left
breast. Primary treatment consisted of lumpectomy,
chemotherapy, and radiotherapy. She is on extended
adjuvant treatment with an aromatase inhibitor.
⇒ Now what?
Her oncologist recommends the following protocol for follow-up:
 Visits every 3-4 months for 10 years
 Annual CT and bone scan
 CBC, LFTs each visit
 Tumour markers (CA-15, CA-27, CEA) each visit
 Bilateral mammogram biennially (as per screening recommendations)
⇒ Do you agree?

13. Survivorship Issues
Routine follow-up care
 Surveillance for recurrence
 Surveillance for late effects of treatment
 Surveillance for new primary cancer
 Psychosocial issues
 Special concerns (social/economic/occupational)
General medical and preventive care

14. Special Issues
 Ongoing adjuvant hormonal therapy
 Weight control
 Lymphoedema
 Menopausal Symptoms
 Osteoporosis
 Cognitive functioning
 Psychosocial functioning

15. Breast Cancer:
surveillance for recurrence
 Distant recurrences
 occur within 5 years
 can occur ≥ 10 years
 Most frequent sites of recurrence:
 breast, bone, liver, lungs
 69% of recurrences are interval events and present with
signs or symptoms, not routine tests
Source: Grunfeld et al., BMJ, 1996

16. Diagnosis of Recurrence
Interval or symptomatic (%)
 Tomlin 1987 64
 Zwaveling 1987 73
 Rutgers 1989 77 (distant)
 Ciatto 1985 58
 Ormistan 1985 78
 Valagussa 1981 78
 Stierer 1989 40 (distant)
 Pandya 1985 54
 Scanton 1980 73
 Winchester 1979 91
 Grunfeld 1997 69*
 Woster 1995 77*
 Donnelly 2002 74*
 te Boekhorst 2001 63
* Identified as interval event Source: Tomiak, Ann Oncol, 1993

17. Adjuvant hormonal treatment
 Extended adjuvant treatment with Aromatase Inhibitors (AI)
and/or Tamoxifen (for hormone receptor +ve)
 Several scenarios:
 immediate Tam (maximum of 5 years)
 immediate AI (maximum of 5 years)
 AI after 2 to 3 years, or after 5 years of Tamoxifen
 AI followed by 2nd AI
 AI for postmenopausal only
 s/e = loss of BMD, fracture (2-4%), bone/joint pain
 Tam for pre, peri, or postmenopausal
 s/e = uterine cancer (1%), hot flashes, DVTs (1-2%)
Source: Burstein, J Clin Oncol, 2010

18. Breast Cancer:
ASCO Guidelines for Follow-Up
 History and physical, including breast exam
Every 3 to 6 months for Years 1-3
Every 6-12 months for Years 4-5
Annually thereafter
 Annual mammogram, unless otherwise indicated
 Other lab tests and scans NOT recommended in
asymptomatic patients
Source: Khatcheressian et al., JCO, 2006

19. Surveillance Mammography
 Purpose
 Detection of ipsilateral recurrence
 Detection of contralateral new primary
 RCTs of follow-up regimens control for
mammography
 Guidelines recommend annual
Source: Grunfeld, Noorani et al., The Breast, 2002

20. Prevalence of Late Toxicities
Common Less Common
Premature Depends on age Cardiovascular CHF 1-5%
menopause and regimen; 70% of Disease
women over 40
CMF
Hot flashes 40-50% Second Primaries Leukemia
1-2%
Weight gain 50% gain 6-11 lbs; Endometrial
cancer <1%
Fatigue 30% 1-5 yrs Sarcoma <1%
Cognitive 30% Bone health 2% fracture
Impairment on AI
Lymphedema 12-35% Blood clots 1-3%
From Cancer Patient to Cancer Survivor, IOM Report 2006

21. Outcomes related to exercise
in breast cancer survivors
Level of Exercise (MET hours/week)
Source: Adapted from Holmes et al., 2005

22. Outcomes related to weight gain
in breast cancer survivors
Change in Body Mass Index (BMI)
Source: Adapted from Kroenke et al., 2005

23. Case: Colon Cancer
Your patient is a 65 year old otherwise healthy woman who
has just completed adjuvant chemotherapy for Duke’s C
colon cancer.
⇒She wants to know what happens now.
She asks you:
- how often do I need to see the doctor?
- do I not to go to the oncologist or my PCP?
- what kind of regular tests do I need?
- what problems should concern me?
⇒ What do you tell her?

24. Colorectal Cancer:
surveillance for recurrence
 early stage – 90% 5 year survival
 Stage III – 65%
 90% of recurrences in first 5 years
 most common sites
⇒liver, lung, local, abdomen
 Metachronous new primary
3 to 5% in first five years
 Meta-analysis of RCTs show that intensive follow-up
results in improved survival

25. Colorectal Cancer:
ASCO Guidelines for Follow-up
ASCO 2005 update
 History and physical:
- q 3 to 6 months x3 years; q 6 months years 4+5
 CEA
- q 3 months ≥ 3years; if stage II or III, eligible for Sx or CTx
 LFTS, FOBT, CBC
- no
 CT chest and abdo; CT pelvis for rectal cancer
- annual if eligible for Sx or CTx
 Colonoscopy
- perioperative; year 3; year 5; more frequently if polyps

26. Objectives of the Presentation
1. Definition and epidemiology of cancer survivors
2. Overview of cancer-related care needs of cancer
survivors
3. Overview of general medical and preventive care
needs of cancer survivors.
4. Review the role of PCP and survivorship care
plans
5. Conclusions

27. Cancer prevalence by age
25.0%
19.3%
20.0% 18.0%
17.8%
14.8%
15.0%
11.3%
10.0% 8.0%
Percentage
5.4%
5.0% 3.5%
2.2%
0.6% 0.9% 1.4%
0.0%
30-34 35-39 40-44 45-49 50-54 55-59 60-64 65-69 70-74 75-79 80-84 85+
Age

28. Number of comorbidities by age
12.8
24.3
12.5 38.6
18.4 16.4
16.1
20.1
22.5
Percentage 16.9
19.2
21.1 15
13.6
12.7 8.8
6.4 4.6
55-64 65-74 75+
Age
0 1 2 3 4 5

29. Severity of comorbidity
by cancer site
2.9 5.5 4.4
7.4 6.8 9
10.3 14.2 14.1
13.3 16.1
17.3 17.3
20
25.4 28.8
31.6
27.6
27.3
29.8 29.8
None
32.9
Mild
29.3 Mode rate
28.6
Se ve re
Percentage
55.3 53.6 52.2
45.5 46
38
31.2 30.6
Lung
Breast
Prostate
All Patients
Gynecological and Neck
Head Urinary System
Digestive System

30. Competing Causes of Death
Yancik, R. et al. JAMA 2001;285:885-892. Source: Yancik et al., JAMA, 2001p 30 mon

31. General Medical and Preventive Care
 Management of comorbid conditions
 heart disease, diabetes
 Early diagnosis of chronic diseases
 Preventive health care
Screening for other primary cancers
new breast primary, colorectal cancer, ovarian cancer
Screening for other chronic diseases
osteoporosis, hypertension, hyperlipedemia

32. Never screened over 4 years
Index Cancer 4
%
HodgkinÕ
s
Breast Lymphoma Endometrial Colorectal
(n=11,219 ) (n=2,322 ) (n=3,473 ) (n=1,833 )
Screening
1
Mammogram - 36.6 24 .4 38 .4
Pap 2 50.7 37 .0 - 63 .2
Colorectal
65.3 76 .1 65 .6 -
cancer 3
1. Females age 50-69
2. Females age 20+
3. Age 50 to 74; FOBT, Barium enema, sigmoidoscopy or colonoscopy
4. Size of sample varies based on age/sex eligibility for screening modality
Source: Grunfeld et al., Can Fam Phys In Press

33. Summary
 Cancer survivors are at risk for late
complications
 Complex interactions between late effects of
treatment, other medical conditions, and
cancer
 Focus on medical care for conditions other
than the index cancer is crucial, particularly
for older cancer survivors

34. Objectives of the Presentation
1. Definition and epidemiology of cancer survivors
2. Overview of cancer-related care needs of cancer
survivors
3. Overview of general medical and preventive care
needs of cancer survivors.
4. Review the role of PCP and survivorship care
plans
5. Conclusions

35. Breast cancer patients:
mix of physician visits
Follow -up Year
% of patients with at least one visit
Physician Specialty
Year 2 Year 3 Year 4 Year 5
(n=11,219) (n=10,026) (n=9,297) (n=8,624)
Primary Care Only * 8.0 12.3 17.3 23.0
Oncology Only* 8.8 7.7 7.5 6.4
Multiple 4.9 3.6 3.0 2.2
PCP and Onc ology* 81.1 77.0 71.8 66.6
PCP and Medical 11.3 16.5 18.4 17.6
PCP and Radiation 7.5 8.2 9.2 9.3
PCP and Surgical 13.1 13.9 14.7 15.9
PCP and Multiple 49.2 38.4 29.5 23.8
* P < 0.001 Source: Grunfeld, J Oncol Pract, 2010

36. Mix of Physician Specialties Visited:
Breast Cancer Survivors
70
60
50 Year 1
40 Year 2
Year 3
30 Year 4
20 Year 5
10
0
Both PCP Only Oncologist Neither
Only
*p<0.0001 for change over time
Source: Snyder et al., JGIM, 2009

37. Testing a Primary Care Model of
Breast Cancer Follow-up Care
STUDY YEARS METHODS SUBJECTS
1991-1992 Focus Groups Patients (England)
1992-1993 Focus Groups Patients (England)
Phase I
1992-1993 Survey FPs (England)
1992-1993 Survey Specialists (England)
Phase II 1993-1994 RCT (n=296) English Patients
Phase III 1997-2003 RCT (n=968) Canadian Patients
Phase IV 2007-2011 RCT (n=400) Canadian Patients

38. Testing a Primary Care Model of
Breast Cancer Follow-up Care
STUDY YEARS METHODS SUBJECTS
1991-1992 Focus Groups Patients (England)
1992-1993 Focus Groups Patients (England)
Phase I
1992-1993 Survey PCPs (England)
1992-1993 Survey Specialists (England)
Phase II 1993-1994 RCT (n=296) English Patients
Phase III 1997-2003 RCT (n=968) Canadian Patients
Phase IV 2007-2011 RCT (n=400) Canadian Patients

39. Results – Phase II
Randomized Trial Difference
(18 months follow-up) Trial Group (95%CI)
PCP Specialist
n = 148 n = 141
Time to diagnosis of recurrence 22 days 21 days 1.5 (-13 to 22)
(days)
Total time with the patient (min) 35.6 20.7 14.9* (11.3 to18.4)
Cost per patient (£s) 65 195 - 130 * (-149 to -112)
Time cost to the patient (min) 53 82 - 29 * (-37 to -23)
 No difference in health-related quality of life over time
 No difference in anxiety or depression over time
 PCP patients more satisfied
*p<0.001 Source: Grunfeld et al., BMJ, 1996

40. Testing a Primary Care Model of
Breast Cancer Follow-up Care
STUDY YEARS METHODS SUBJECTS
1991-1992 Focus Groups Patients (England)
1992-1993 Focus Groups Patients (England)
Phase I
1992-1993 Survey PCPs (England)
1992-1993 Survey Specialists (England)
Phase II 1993-1994 RCT (n=296) English Patients
Phase III 1997-2003 RCT (n=968) Canadian Patients
Phase IV 2007-2011 RCT (n=400) Canadian Patients

42. Follow-Up Guideline Sent
to Primary Care Physicians

43. Family Physician Cancer Centre Risk Difference
(FP) Group (CC) Group CC – FP
Outcome Event (n=483) (n=485) (95% CI)
Number of Patients (%)
Recurrence 54 (11.2%) 64 (13.2%) 2.02%
Distanta 36 38 (-2.13, 6.16)
Locala 10 12
Contralaterala 11 15
Death (All Causes) 29 (6.0%) 30 (6.2%) 0.18%
(-2.90, 3.26)
Serious Clinical Events 17 (3.5%) 18 (3.7%) 0.19%
(-2.26, 2.65)
Spinal Cord compressionb 0 1
Pathological fractureb 3 8
Uncontrolled local recurrenceb 2 0
KPS ≤ 70b 14 18
Brachial plexopathyb 0 0
Hypercalcemiab 2 2

46. Testing a Primary Care Model of
Breast Cancer Follow-up Care
STUDY YEARS METHODS SUBJECTS
1991-1992 Focus Groups Patients (England)
1992-1993 Focus Groups Patients (England)
Phase I
1992-1993 Survey FPs (England)
1992-1993 Survey Specialists (England)
Phase II 1993-1994 RCT (n=296) English Patients
Phase III 1997-2003 RCT (n=968) Canadian Patients
Phase IV 2007-2011 RCT (n=400) Canadian Patients

47. Evaluating a survivorship care plan
Overall Objective:
 To determine if a survivorship care plan and educational
intervention for breast cancer survivors ready for
transition from specialist care to primary care improves
patient and health service outcomes

48. From Cancer Patient to Cancer Survivor:
Lost in Transition
Institute of Medicine, 2006
Recommendation 2:
Patients completing primary treatment
should be provided with a
comprehensive care summary and
follow-up plan that is clearly and
effectively explained. This
“Survivorship Care Plan” should be
written by the principal provider who
coordinated oncology treatment.

49. What is a care plan
 Identifying information (patient and provider)
 Cancer treatment summary
 Diagnostic tests completed
 Risk of recurrence
 Signs and symptoms
 Recommended surveillance guidelines
 Potential late effects
 Preventive care recommendations

50. Design and Setting
Design:
 Multicenter randomized controlled trial
Setting:
 400 breast cancer patients on active follow-
up through tertiary cancer centers
throughout Canada

51. Study Intervention
All Patients Received:
Transfer to patients’ own FP for exclusive follow-up (i.e., all
oncology providers agree to transfer)
Discharge visit with oncologist according to usual practice
Patients and FPs instructed to schedule the first follow-up visit in
approximately 3 months
Statement that follow-up now provided by FP

52. Study Intervention
Intervention Group Only Received:
Patient received:
30 minute educational session with nurse
Survivorship care plan
Patient’s FP received:
Survivorship care plan
Guideline on follow-up
User friendly abbreviated version
Reminder table of visits and tests

53. Survivorship Care Plan

54. Patient-reported Outcomes: Change Scores over Time
Red dashed line = SCP, Black solid line = No SCP
Source:Grunfeld, J Clin Oncol, 2011

55. Who should provide
long-term care?
ASCO guideline - 2005 update
Based on two RCTs .. follow-up by a PCP appears to lead to
the same health outcomes as specialist follow-up with good patient
satisfaction. There is no reason to think that US patients will
be any different.
Canadian guideline - 2005
“responsibility for follow-up should be formally allocated to a
single physician, with the patient participating as much as
possible”

56. Percent willing to provide exclusive cancer follow-up:
results from a Canadian national survey of FPs1
Cancer ≤2yrs 3 to 5 yrs 10+ or never
Prostate 55.3 35.4 8.1
Colorectal 49.8 33.4 15.4
Breast 50.0 40.5 7.7
Lymphoma 42.0 41.6 15.4
1. Current experience providing exclusive follow-up most significant predictor of
willingness. Source: Del Giudice, Grunfeld, et al,, J Clin Oncol, 2009

57. Usefulness of various modalities to help PCPs
provide exclusive cancer follow-up
Rank Modality %
1 Patient-specific standardized letter with guidelines 95.4
2 Printed guidelines 91.8
3 Expedited rates of re-referral 92.7
4 Expedited access to test for suspected recurrence 91.1
5 Ability to telephoneemail specialist for advice 86.1
Source: Del Giudice, Grunfeld, et al J Clin Oncol, 2009

58. Objectives of the Presentation
1. Definition and epidemiology of cancer survivors
2. Overview of cancer-related care needs of cancer
survivors
3. Overview of general medical and preventive care
needs of cancer survivors.
4. Review the role of PCP and survivorship care
plans
5. Conclusions

59. Conclusions
 Growing prevalence of cancer survivors
 Change in perspective from acute life threatening disease to
chronic disease
 Growing body of research shows that PCPs can, are, & wish
to play a key role in post-treatment cancer care
 For breast cancer patients, a standard discharge visit with the
oncologist achieved similar results as a survivorship care plan
and educational session
 Quality of general preventive care is a concern
 Involvement of PCPs in post-treatment cancer care is
essential but need guidelines, access, and education

60. Niagara Falls, Canada