Addressing Survivorship Issues
for Women with Breast Cancer:
An Emphasis on Sexuality
Elli Collins, RN, MS, OCN, CBCN
Oncology Clinical Nurse Specialist
Kathryn Bracero, RN, OCN
Supervisor, Oncology Services
Stacey LaFave, MS
Oncology Social Worker
CVPH Medical Center
The FitzPatrick Cancer Center
A Quality Improvement Initiative
Purpose of Project: To increase
access to appropriate support and
services to address breast cancer
survivors’ concerns regarding
sexuality and intimacy issues
Background
 More than 11 million cancer survivors
 Need to address survivorship issues, not just immediate side
effects of treatments
 Mandated by 2015
 Facilitator of “Treasure Chests” (BCSG) since 1986
 Have received much feedback, comments, concerns over the
years – often r/t sexuality issues
 Periodic programs for survivors as part of TC meetings (i.e.
Shar-ring telephone conference; Dr. Patti O’Brien; generalized
discussion at meetings)
 Still a recurring theme by women cancer survivors (not just
breast)
Turning Point - 2008
 “Survivorship Education for Quality Cancer Care Conference”
– City of Hope - 2008 – 2 staff attend
 Focus of monthly Nursing Inservice Education on
Survivorship Issues – 2009
 Breast Cancer Survivors invited to be part of the Sexuality
nursing inservice – share their stories
 Informative articles distributed to nursing staff
 Significant impact to staff of survivor comments
 Decided to look at avenues to pursue this topic
 2010 – decide to investigate grant possibilities
Main Objective
Our main objective at the time - to
apply for grant funding to address
this quality improvement initiative
Fall - 2010
 Decide to pursue Susan G. Komen grant (NENY
Affiliate)
 Grant application deadline – November 2010
 Kathy, Stacey and Elli begin to brainstorm – time
crunch
 Need to collect data to verify the lack regarding
this under-addressed topic (Needs Assessment)
 Two 5-point Likert Scale surveys developed; one
for survivors; one for nurses
 Surveys were not tested for validity or reliability
– limited time frame – needed information
Methods
 Patient Survey (needs assessment) mailed to 800
breast cancer survivors
 Patient Survey also emailed to over 300 (of the
same) women with breast cancer (alerting them
about the mail)
 Nurse Survey (needs assessment) emailed to
Director and Clinical Coordinator of the Inpatient
Oncology Unit (R5) to distribute to staff on the 3
shifts
 Nurse Survey given to each nurse in Cancer Center
 Deadline indicated (October 8, 2010).
Results of Patient Survey
 178/800 surveys returned (22% response rate/in 2-3 week
time frame)
 Demographics:
* Year since diagnosis:
~ 0-1 yr:
8% (15)
~ 1-3 yrs:
19% (34)
~ 3-5 yrs:
15% (26)
~ 5-10 yrs:
25% (45)
~ 10 + yrs:
32% (57)
 Currently receiving treatment (including HT):
* Yes 27% (48)
* No 68% (121)
* Blank 4% (8)
(NOTE: We did not ask age.)
Patient Survey (cont)
 Treatments they had:
* Lumpectomy
* Mastectomy
* Chemotherapy
* Radiation Therapy
* Hormonal Therapy
* Reconstruction
* Other
63% (113)
33% (58)
45% (80)
69% (122)
29% (51)
10% (17)
2% (5)
(tamoxifen, arimidex, medication)
* Blank
1%
(1)
Survivors were asked to Rate the SIGNIFICANCE
of each of 15 issues r/t sexuality or intimacy:
(1 & 2) Not at All/Very Little;
(3) Somewhat/Occasionally;
(4 & 5) Very Much/All the Time















Pain with intercourse
Other Pain
Loss of Sex Drive
Loss of Desire
Difficulty reaching orgasm
Hot Flashes
Vaginal Dryness
Fatigue
Vaginal Discharge
Change in Body Image
UTI’s
Fertility Concerns
Depression
Stress
Communication Probs
1 & 2
34% (61)
39% (70)
26% (46)
26% (47)
24% (42)
23% (40)
20% (35)
21% (38)
38% (68)
25% (44)
44% (77)
42% (75)
28% (50)
8% (33)
30% (53)
NA= No Answer, but box marked
No boxes checked at all: 11% (20)
3
12% (21)
15% (27)
13% (24)
12% (22)
17% (30)
14% (24)
8% (15)
28% (50)
4% (8)
8% (14)
2% (4)
1% (1)
14% (25)
18% (32)
9% (16)
4 & 5
15% (27)
6% (11)
27% (48)
27% (48)
15% (27)
32% (57)
37% (67)
27% (48)
4% (8)
27% (47)
3% (6)
1% (2)
14% (25)
21% (39)
10% (18)
NA
1% (1)
1% (1)
1% (2)
1% (2)
1% (1)
1% (2)
2% (4)
2% (3)
1% (2)
1% (2)
1% (1)
1% (1)
1% (2)
2% (3)
1% (1)
Women sought information from the following
professionals:















Medical Oncologist
Radiation Oncologist
Surgeon
Ob/Gyn
Psychiatrist
Family Physician
Physician (other)
Nurse Practitioner
PA
Nurse – Cancer Center
Clinical Nurse Specialist
Nurse – Other
Social Worker – Cancer Center
Social Worker/Counselor-Other
No boxes checked
20% (36)
6% (10)
4% (8)
32% (57)
6% (10)
28% (50)
3% (5)
8% (15)
6% (11)
10% (18)
3% (5)
3% (6)
2% (3)
7% (13)
38% (67) Interesting!
How satisfied were they with the
information from the professionals?






Never asked
Very Little
Somewhat
Very Much
Extremely Satisfied
No box checked
9% (16)
10% (17)
17% (31)
28% (50)
18% (32)
17% (31)
Why did they not speak with a professional?





Didn’t realize they could
6% (10)
No one asked me
13% (23)
Was uncomfortable/embarrassed
12% (21)
Did not realized the two were connected 12% (21)
No box checked
61% (109)
 Other: I associated the problem with age; I don’t worry
about small things; had no need to; no problems I could not
handle; joint pain; did not think it was necessary; was not
interested; holistic health counselor
From what other individuals did they seek
support/answers?










Spouse/Partner
Friend
Family Member
Another BC Survivor
Support Group
National Organization (800#)
Internet
FCC Literature
Other
No box checked
37% (65)
34% (61)
25% (44)
25% (44)
11% (19)
2% (3)
12% (22)
20% (36)
31% (55)
Asked about the literature at FCC:
Yes
 Were they given literature?
No
No Ans.
40% (71)
52% (92)
7% (13)
 Did literature answer question? 34% (60)
10% (18)
54% (96)
 Of note: Every exam room has the ACS booklets on
Sexuality in the literature wall racks. We did not ask if
they took the literature on their own, only if it was given to
them.
Asked about the importance to them of
being asked about sexuality concerns by
the different professionals
Key:
(1&2) Not at all/Very Little; (3) Somewhat; (4&5) Important/Very Important
1&2
• Oncologist
27% (49)
• FCC Nurse
25% (46)
• Getting info 22% (40)
support, referrals
from FCC
3
22% (40)
18% (32)
12% (22)
4&5
No Ans.
44% (79) 9% (16)
47% (83) 7% (13)
51% (91) 12% (21)
Some telling comments:
•
Many of these issues appear after treatment, as well as during, so
they need to be discussed ASAP!
•
It is a difficult thing to discuss especially with a male physician, so it
would be easier if the doctor broached the subject
•
I am inhibited, uncomfortable talking about sex/sexual matters
•
Although at this point I am thankful to be alive and enjoying
grandchildren, etc, the sexual issue is a horrible dark cloud that
hovers over my long term marriage. The depression waxes and wanes,
even with medication. The neuropathy is agony sometimes even with
meds. I don’t know the answers other than life isn’t perfect and
wasn’t meant to be. Just thankful that there are good days mixed in
with the bad. The Lord is my strength and help amidst it all
Comments (cont)
•
I never realized my breast cancer had any relation to this problem
•
I think there should be more emphasis on this subject as it affects
many of our personal lives and relationships
•
Discussed vaginal symptoms with NP. Did not realize others were
connected to breast cancer
•
Sexuality kind of went out the window. On a scale of importance
after this diagnosis, it is important and should not be neglected
•
Repeatedly told- nothing could be done – “live with it”, join a support
group
•
Thanks for caring
•
Support patients every way you can
•
And more…
Nurse Survey
The Professional Perspective
• N=26 surveys returned from FCC/R5
• Small sample size
• Did not delineate surveys by unit. Do not know
total number given out.
• We did not measure knowledge – asked about
their perceptions of their knowledge about
therapy effects on sexuality/intimacy
How familiar were they with effect of cancer and
the therapies on sexuality/intimacy?
Key: (1 & 2) Not at All/A Little; (3) Somewhat; (4&5) Very/Extremely
1 & 2
3
4 & 5
 Cancer/The Disease
15% (4)
42% (11)
42% (11)
 Surgery
12% (3)
50% (13)
39% (10)
 Hormonal Therapy
27% (7)
46% (12)
27% (7)
 Chemotherapy
27% (7)
35% (9)
39% (10)
 Radiation Therapy
27% (7)
39% (10)
35% (9)
 Targeted Therapy
39% (10)
35% (9)
27% (7)
To what degree aware that the treatment side
effects can impact sexuality/intimacy:

















Key: (1&2) Not at all/Very Little; (3) Somewhat; (4&5) Very/Extremely
1 & 2
3
4 & 5
Depression
12% (3)
23% (6)
65% (17)
Loss of Sex Drive
15% (4)
19% (5)
65% (17)
Change in Body Image
8% (2)
15% (4)
77% (20)
Loss of Desire
19% (5)
31% (8)
58% (15)
Vaginal Dryness
15% (4)
23% (6)
62% (16)
Vaginal Discharge
23% (6)
35% (9)
42% (11)
Vaginal Stenosis
35% (9)
27% (7)
39% (10)
UTI’s
31% (8)
19% (5)
50% (13)
Painful Intercourse
19% (5)
35% (9)
46% (12)
Fertility Issues
23% (6)
23% (6)
54% (14)
Hot Flashes
27% (7)
31% (8)
42% (11)
Stress
12% (3)
31% (8)
58% (15)
Change in Sensations
27% (7)
31% (8)
42% (11)
Fatigue
19% (5)
19% (5)
62% (16)
Pain
19% (5)
15% (4)
65% (17)
Alteration in Relationships 19% (5)
27% (7)
54% (14)
Communication Problems 19% (5)
31% (8)
58% (15)
Comments about the Nurse Survey:
• It is reassuring to see that of the 3 columns, the greatest
percentage still falls in the “feel very” or “extremely aware”
category for the side effects.
• On flip side, totaling the other 2 columns still indicates a
need for education.
• The specific effects of specific drugs or therapies was not
separated out.
Frequency with which the nurse asked patients about
sexuality issues: (N=26)
•
•
•
•
•
Never
Rarely
Occasionally
Usually
Always
27% (7)
46% (12)
19% (5)
4% (1)
0
 58% - “not enough time”
 35% - “the patient didn’t ask”
 19% - “were embarrassed”
 27% - “didn’t feel comfortable with the information
 58% - “didn’t know enough about it”
 54% - “didn’t know the resources”
 65% - “lack of privacy”
Extent to which the nurse felt
comfortable discussing the topic with
patient/spouse:
• 46% (12) – “not at all” or “a little”
• 35% (9) – “somewhat”
• 19% (5) – “very” or “extremely comfortable”
We had work to do!
•
Clinical Relevance
“We talk about everything with our patients – bowel and
bladder habits, nausea and vomiting, but we do not address
sexuality issues. It is the last frontier for us…” …”It is
hard for us to think about sexuality and cancer at the same
time because they do not seem to go together. When you
think about sexuality, you usually use positive or neutral
words, but cancer is usually associated with negative words.
We are very focused on treating cancer and forget about
sexuality and it’s importance to patients.”
~ Mary Hughes
2009 ONS Mara Mogensen Flaherty Lectureship
First Public Endeavor after NENY Komen grant received:
Exhibit at 13th Annual Treasure Chests Soiree - May 26, 2011
Exhibit at CVPH Community Lecture Series – Sept. 21, 2011
Overall Goals of the Grant:
• Apply various strategies to educate health professionals
within the Cancer Center, CVPH Medical Center, the
community, and breast cancer survivors and their partners
pertaining to sexuality/intimacy issues related to cancer and
its therapies
• Hire a consultant (Dr. Sage Bolte) to:
* Evaluate our needs
* Help us introduce sexual health assessments into the
nursing assessments
* Provide 2 days of intensive education to 2 previously
identified FCC RN’s
* Present an evening educational dinner program (Oct. 24) to
women with breast cancer, their partners and various
health professionals
Advance
Publicity
Included
brochure
mailings to
survivors,
professionals;
newspaper
article; other
local publicity
Addressing the Elephant in
the Room:
Sexuality, Relationships &
Cancer
Sage Bolte, PhD, LCSW, OSW-C*
Life with Cancer ®
sage.bolte@inova.org
*Some of the slide content developed by S. Bolte and K. Tierney, 2011, ONS
Regional Conferences
Registration Desk at “Sexuality
Dinner Program” – October 24, 2011
October 24 Preliminary Program Results
 Publicity
•
~1000 brochure invitations mailed to cancer survivors
•
~200 brochures mailed to health professionals
•
•
Email reminders sent to both groups
Flyers distributed and posted all over CVPH/FCC
 Dinner Program Attendees: N= 75
24
17
2
15
5
7
5
Breast Cancer Survivors
Partners
Physicians (Med Onc, Onc. Psych.)
Nurses
Counselors/Social Workers
Other Allied Health Profls (Pt Nav)
Student Nurses
Pre/Post Test Questions for
Breast Cancer Survivor or Partner
1=Strongly Agree; 2=Agree; 3=Not Sure; 4=Disagree; 5=Strongly Disagree
1.
I feel comfortable with my knowledge of how cancer/it’s
treatments may affect my (or my partner’s) sexuality.
2.
I have enough information to have a conversation with my HC team
about how treatment may affect my (partner’s) sexuality.
3.
I feel competent in creating change in at least one area of my
sexual health and/or intimate relationships.
4.
I have enough information to have a conversation with my partner
about how cancer has affected my sexuality.
Pre/Post Test for
Health Care Professionals
1= Strongly Agree; 2= Agree; 3=Not Sure; 4= Disagree; 5=Strongly Disagree
1.
I feel comfortable with my knowledge of how cancer/it’s
treatments may affect my patient’s sexuality.
2.
I have enough information to have a conversation with my patients
about how treatment may affect their sexuality.
3.
I feel competent in creating change in at least one area of my
patients’ sexual health and/or intimate relationships.
4.
I have enough information to have a conversation with my patients
about how cancer may have affected their sexuality.
Participant Evaluation Form
(Survivors/Partners and Professionals together)
The extent to which the objectives were met:
Key: 1=Poor
2=Fair
3= Good 4=Very Good
1.
Define Sexuality and Intimacy.
2.
Identify the impact of cancer
treatment on sexual self.
3.
Describe the options to help manage
difficulties with sexuality & intimacy.
4.
Increase comfort with addressing
sexual health issues.
1
2
5=Excellent
3
4
Data is in process of being summarized.
5
Conclusions so far…
• Sexuality/Intimacy Issues ARE a concern to breast cancer
survivors
• Survivors want the subject addressed
• Nurses ARE uncomfortable with the subject
• Nurses do feel a lack of knowledge
• Although the grant is for “breast cancer patients,” the
information and resources are applicable to patients with any
type of cancer
• Providing free programs (e.g. October 24) doesn’t necessarily
mean attendance by professionals & patients will be incredible
• A variety of strategies may be needed to address this topic
for patients and professionals (e.g. individually, smaller groups)
Progress: Consultant Recommendations
October 24-25: Successful intensive 2 days with Dr. Sage Bolte
 Work with the Oncology Clinical Nurse Specialist in the
implementation process (beginning with patient contact shortly
after diagnosis and transitioning to nurse contact at first oncology
appointment)
 Determine the best way to introduce to the nursing staff, simple,
practical ways in which to incorporate sexual health assessment
into routine nursing assessments
 Utilize meetings to help the Cancer Center nurses to become more
comfortable with the topic
 Encourage use of the two “sexuality resource nurses” as necessary
Consultant Recommendations (cont)…
 Create resource list for patients
 Increase awareness of types of products & resources available
locally (i.e. sample lubricants, websites, literature, etc.)
 Evaluate and revise our nursing assessment “form” incorporating
more of a “Quality of Life” assessment format (& including sexuality)
 Review our educational materials and revise accordingly to include
sexuality and other QOL issues.
 Incorporate use of a Distress Scale with sexual health assessment
 Eventually incorporate into Survivorship Care Plan
 And more…!
Additional Planned Grant-Funded Program
Half-Day Survivorship Program for survivors (March 2012)
 Scheduled Keynote is Susan Leigh, RN, BSN
 Plan to address several “hot topics” including Sexuality, Nutrition, and
Exercise. Presenters in the process of being confirmed.
 Offer participants the opportunity to experience Complementary
Therapies including massage, healing touch, reiki and reflexology at the
program
 Get feedback from participants - evaluate program
Closing Remarks
• This initiative is still a work in progress…
• Continue to evaluate our methods and strategies.
• What have we have learned? Have we made a
difference?!!
• Communication in every direction is key!
Thank You!