Scanxiety:
Controlling Fear of Cancer
Juhee Cho
Department of Health Science & Technology
SAHIST, Sungkyunkwan University
What is Scanxiety?
• Scan + Anxiety =Scanxiety
• Fear of what can be found from scan
– If I have cancer?
– Shrunk? Disappeared?
– Recurrence?
• Pre-scan psychosis: stress patients suffer as
they approach to having scan
Fear of Cancer Recurrence (FCR)
• High levels of FCR are very common, with 42-
70% of survivors reporting clinically
significant levels of FCR.
• FCR usually does not decrease over time even
when risk of recurrence is low.
• Women with DCIS also most concerned about
recurrence and metastasis
• FCR is the most unmet needs among breast
cancer patients
1. Simard S:4th Canadian Breast Cancer Research Alliance Reasons for Hope Scientific Conference: Vancouver, Canada; 2008.
2. Thewes B: Support Care Canc2012,20(11):2651–265913. 3. Ghazali N:Psychooncology2012. doi:10.1002/pon.3114.
Scanxiety among DCIS patients
“Well have I got cancer or haven’t I?”
“I am having a mastectomy for this pre-cancerous
condition. Am I really overreacting here or what’s
going on?”
“I was never told you had cancer or it could spread, or
anything. But I do always fear of recurrence and
metastasis.”
“The surgeon can’t tell us a lot about what will be the
long-term prognosis, its really hard for him to predict in
5 years time, or even in a years time.”
Issues with DCIS
• DCIS may be a difficult concept for
patients to understand: non-invasive cancer
• Misperceptions about the severity of DCIS
• Worries and distress about recurrence and
metastasis persists several years after
diagnosis and completion of treatment.
Consequences of High FCR
• FCR is associated with poor quality of life and
emotional well-being
– higher mental and physical fatigue
– higher depression and anxiety in cancer survivors.
• People with high FCR use more services or
may avoid appropriate tests to identify
recurrence in a timely fashion.
– Waste of resources
– Unnecessary delays
Scanxiety among Korean DCIS patients
• To assess scanxiety, fear of recurrence, and
quality of life in DCIS patients in Korea
• Cross-sectional survey
• Out-patients clinics at 2 major hospitals in
Seoul
• Study population:
– Stage 0 to 3 breast cancer patients
– Who had at least 1 surveillance check-up (who
finished the active treatment at least 1 year ago)
Measurements
Questionnaire Contents
Experience of surveillance -Difficulties, needs, unwillingness
-Counseling experience
Scanxiety -Fear related to surveillance
Fear of recurrence -Fear of second
cancer/recurrence/metastasis
HADS -Anxiety & depression
Knowledge about DCIS -Perception the risk
-Knowledge about surveillance
WHOQOL -Quality of life
Characteristics of clinical and
socio demographic
-Stage, age, treatment, education,
income, employment, etc
Pilot Results
Characteristics of participants (N=410)
DCIS (Stage 0)
N=61(14.9%)
Stage 1
N=143(34.9%)
Stage 2
N=147(35.9%)
Stage3
N=59 (14.4%)
• Study participants
• Mean age: DCIS (52.3), Stage I&II (51.8)
• Average of time since surgery
− Mean= 4.8 year (Range: 0.7~32.7)
Characteristics of participants
DCIS (n=61)
Stage 1~2 (n=290)
Stage 3 (n=59)
Characteristics N (%) N (%) N (%) P-value Age Mean (SD) 52.3 (11.0) 51.8 (9.5) 50.7 (8.7) 0.64 Marital status 0.47 Coupled 51 (83.6) 239 (82.4) 48 (81.4) Number of children 0.77
Mean (SD) 1.8 (1.1) 1.8 (0.9) 1.7 (0.8) Education 0.01 ≥College 36 (59.0) 140 (48.3) 25 (42.4) Working status 0.38 Currently working 23 (37.7) 94 (32.4) 20 (33.9) Monthly family income 0.06
>$4000 23 (37.7) 91 (31.4) 16 (27.1) Religion 0.15 Yes 44 (72.1) 211 (72.8) 44 (74.6) Time since surgery(yr) Mean (SD)
4.8 (4.0)
4.5 (3.8)
6.1 (5.9) 0.03
Co-morbidity 0.02 Yes 37 (60.7) 123 (42.4) 21 (35.6)
Most important tests
*
Rank DCIS Invasive
1 Breast sono (93.4%) Breast sono (94.3%)
2 Mammography (86.4%) Mammography (79.1%)
3 Blood tests (57.4%) Blood tests (74.8%)
4 MRI (45.9%) Bone scan (74.7%)
5 PET-CT(44.3%) MRI (46.7%)
Most difficult/dislike tests
*
Rank DCIS Invasive
1 Mammography (32.8%) Mammography (37.3%)
2 PET CT (22.9%) Bone scan (31.2%)
3 MRI (18.0%) PET CT (27.2%)
4 Bone scan (16.4%) MRI (22.4%)
Having fear associated with surveillance
(Scanxiety)
Yes
70%
No
30%
70.5 69.7 69.5
50
60
70
80
90
100
DCIS Early stage Late stage(%)
P-value=0.92
Yes
62%
No
38%
Worrying about next surveillance
57.4
64.1
55.9
50
60
70
80
90
100
DCIS Early stage Late stage(%)
P-value=0.40
Perceived risk of recurrence
13.6
42.4
27
17
4.6
33.2
26
36
0
20
40
60
none somewhat moderate very
DCIS
Invasive
(%)
P=0.004
Perceived risk of metastasis
17
40.7
27
15.3
5.5
34.3
23.9
36.3
0
20
40
60
none somewhat moderate very
DCIS
Invasive
(%)
P=0.001
none
14%
somewhat
42%
moderately
27%
very
17%
Concern about breast cancer
recurrence (N=61)
Fear of recurrence in DCIS
Knowledge of DCIS
Statements
% of
answering
correctly
DCIS is one of the most serious forms of cancer (No)
70.5
DCIS can become an invasive breast cancer (Yes)
41.0
A woman who has had DCIS is more likely than other women with breast
cancer to develop cancer in the other breast (No) 16.4
A woman who has had her breast removed can still get breast cancer (No)
27.9
Women with DCIS has to do regular check up as much as women with
invasive breast cancer (No)
8.2
DCIS have the 1% of possibility that can become metastasis cancer (Yes)
36.1
Would like to avoid cancer surveillance
2.9*
0.5
1.0
0
0.5
1
1.5
2
2.5
3
Od
ds
rati
o(9
5%
CI)
Yes
25%
No
75%
* P-value<0.05
5.5
1.5
1.3
0.1
2.0
0.5
Scanxiety Fear of recurrence Invasive cancer
vs. none vs. none vs. DCIS
Willing to get more cancer surveillance even
clinically not required
Yes
55%
No
45%
1.0
3.5*
1.8*
0
0.5
1
1.5
2
2.5
3
3.5
4
Od
ds
rati
o(9
5%
CI)
Scanxiety Fear of recurrence Invasive cancer
vs. none vs. none vs. DCIS
* P-value<0.05
Adjusted for age and survival
1.8
0.7
1.3
3.2
1.0
10.6
Scanxiety makes me do more active health
management
Yes
95%
No
5%
90.2 94.1
96.6
50
55
60
65
70
75
80
85
90
95
100
DCIS Early stage Late stage(%)
P-value=0.64
Problems due to Scanxiety
65.6 61.4
71.2
50
55
60
65
70
75
80
85
90
95
100
DCIS Early stage Late stage(%)
1) Daily activity disturbance 2) Business ability/Concentration
P-value=0.34
57.4 56.9
62.7
50
55
60
65
70
75
80
85
90
95
100
DCIS Early stage Late stage(%)
P-value=0.83
Scanxiety and Depression
3.5 4.1 3.5
6.4 7.1 7.8
0
5
10
15
20
DCIS Early stage Late stage
normal
scanxiety
7.8 7.9 7.1
8.7 9.2 10.1
0
5
10
15
20
DCIS Early stage Late stage
normal
scanxiety
1) Anxiety(range 0~21) 2) Depression(range 0~21)
*
* P-value<0.05 * P-value<0.05
* *
* *
Unmet needs: communication with doctors
16.4 18.6
6.8
0
10
20
30
40
50
60
70
80
90
100
DCIS Early stage Late stage(%)
54.1
63.8 66.1
0
10
20
30
40
50
60
70
80
90
100
DCIS Early stage Late stage(%)
1) Ever talked with physicians 2) Want to talk with physicians
P-value=0.18
P-value=0.82
Counseling experience and scanxiety
1.2*
1.4
1.1
1.5
0.8
0
1
2
3
4
Od
ds
rati
o(9
5%
CI)
3.3
Family Patient Nurse Friend Doctor *P-value<0.05
Adjusted for stage
2.8 2.3
1.0
0.4
2.6
1.1 1.0
0.5
1.5
Summary of Findings
• DCIS patients are having similar tests for surveillance
as other invasive breast cancer patients.
• DCIS patients experience the same level of scanxiety
as invasive breast cancer patients.
• Perceived risk of recurrence among DCIS patients is
much higher than actual chance.
• DCIS patients have similar level of fear of recurrence
as invasive breast cancer patients.
• DCIS patients do not have appropriate knowledge.
• Scanxiety is negatively associated with compliance of
surveillance.
Discussions
• Need more detailed surveillance guideline for
DCIS patients
– High risk group
• Younger age at diagnosis, Omission of radio-therapy
• Large, high grade and multifocal or multicentric tumors
• Educating patients and more active
communication
– Accurate risk perception
– Helping to reinforce a sense of control
– Psychosocial support for fear of recurrence.
Thank you
Thank you for your attention