Scanxiety:

Controlling Fear of Cancer

Juhee Cho

Department of Health Science & Technology

SAHIST, Sungkyunkwan University

jcho@skku.edu

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