WORKING WITH WOMEN WHO

HAVE BREAST CANCER

ADARA 2018 BREAKOUT CONFERENCE

KENDRA L. SMITH, Ph.D. LCPC
BREAST
CANCER
 ADVOCATING FOR COMPASSION
WITHIN RESEARCH

• Respect for those who are living through, living with, or living
beyond life-threatening illnesses
• Caring about the complex conditions that shape their experiences
• Avoiding research that does not have passion and feels
disembodied or emotionally sanitized
• Engaging the participants in all parts of the research process
 EXISTING RESEARCH

• 2001: Bringing breast cancer education to deaf women

• 2003: Deaf Survivors: Breast cancer stories from all over the United
States
• 2009: Deaf women with breast cancer: The meaning of social support
• 2013: Breast cancer education for the Deaf Community in American
Sign Language
• 2013: Breast cancer knowledge and practices among D/deaf women
 EXISTING RESEARCH

• UCLA-GLAD studies
• Participants 40+ years old
• Self-identified as D/deaf or hard of hearing
• Study 1 (2002-2003): What do D/deaf women know and understand about
breast cancer?
• 68 interviews (7 were BC survivors)
• Study 2 (2008-2010): Comprehensive breast education program for D/deaf
women who did not have breast cancer
• 22 D/deaf BC survivors
• Intervention administered and questionnaires completed
 COMMUNITY EFFORTS

• Deaf Mosaic (1993), Episode 811

• Signing On: A Documentary Film (2011). Anita Buel
and Deaf Pinkies, Minnesota
 MY RESEARCH: THE BEGINNING

• Invitation to join a community forum

• Criteria:
• Deaf, hard of hearing, and (ASL-proficient) hearing
• Breast cancer survivors or previvors with genetic markers
• Asked:
• What is your “wish list” for breast cancer survivors in the Deaf
Community? Is there anything we need to understand better
about what it’s like to have breast cancer? Do we have questions
that are not yet answered?
 THREE THINGS:

• Thirst for accurate information

• Culturally-informed medical providers
• Need for emotional support
LIVING THROUGH…
 BREAST CANCER: DIFFERENT STORIES

• Type of breast cancer and stage

• Grade
• Appropriate treatment
• Treatment availability and expense
• Clinician’s diagnostic skills, knowledge, and judgments
• Individual body’s reaction to treatment regimes
• Personal genetic make-up
• Prognosis depends on the stage at diagnosis, the biological characteristics
of the tumor and the age and health of the patient
 WHAT IS CANCER

• Broad term for a class of diseases characterized by abnormal cells that grow and
invade healthy cells in body tissue.

nationalbreastcancer.org
 WHAT IS BREAST CANCER

• Malignant cancer cells in breast

tissue, often in milk producing
system
• Breast cancer cells that invade
tissue or organs outside the breast
are still “breast cancer”
• 1 in 8 U.S. women will be
diagnosed with breast cancer
 BREAST CANCER GROWTH

• Normal healthy chemicals

in a woman’s body
• Estrogen
• Progesterone
• HER2 (a growth hormone)
 TUMOR GRADES

• Grades (severity of the mutation and

likelihood it will spread)
• 1 = Look more like healthy cells (low grade)
• 2 = Look moderately different than healthy cells
(Intermediate grade)
• 3 – Look abnormal and very less like normal tissue
(high grade)
 CANCER STAGES

• Determined by:
• Size of the tumor in the breast
• Number of lymph nodes affected
• Whether or not the breast cancer has invaded other organs
• Stage 0 & 1A and 1B: confined to a small area and found early (non-invasive)
• Stage 2A & 2B: early stages but already spreading (within the breast)
• Stage 3, A, B, C: ”advanced”—cancer has invade some surrounding tissue
• Stage 4: Breast cancer has spread to other areas of the body
• New grading in 2018: Also consider estrogen- and progesterone status and HER2
 TREATMENTS

• Surgery
• Radiation
• Chemotherapy
• Hormonal therapy
• Targeted therapy
• Immunotherapy
• Complementary and holistic medicine
 It is mine! MY decision. Help guide me to listen to my
heart and soul and essence. --LP

How can we think when there is so little sleep? --GP

I would want them to know that every cancer patient has anxiety
about all of the decisions we have to make. --JW

People think insurance pays for most of my medical

expenses. My partner and I had to get a second mortgage
on our house to pay for my chemotherapy. --MM
 LIVING WITH…
SIDE EFFECTS OF TREATMENT

• Appetite and taste • Dry mouth • Memory loss • Scar tissue

• Anemia • Fatigue • Mood swings • Scar adhesion

• Anxiety • Fertility issues • Mouth sores • Swelling

• Hair loss and changes • Muscle pain • Swallowing
• Back and joint pain
• Nail changes problems
• Hearing problems (tinnitus)
• Blood clots
• Nosebleeds • Vaginal dryness
• Heart problems
• Cold and flu symptoms • Vomiting
• High cholesterol • Numbness
• Constipation/diarrhea • Weight
• Early (and quick!) onset of • Osteoporosis
• Coughing changes
menopause • Phantom breast pain
• Axillary Web
• Delayed wound healing • Dry skin and itching • Runny nose Syndrome
• Loss of libido • Leg cramps • Smell changes (cording)
• Lymphedema
 MYTHS AND MISINFORMATION

• Women do not die from cancer that stays in the breast

• Breast cancer does not have a cure, though the survival rate is
increasing yearly by reducing the risks (e.g., hormonal therapy to
reduce estrogen levels)
• Once you have breast cancer (above Stage 1) it is highly likely the
cancer will recur. The goal is to delay recurrence.
• “Remission” and NED (No Evidence of Disease)
 MIND-BODY CONNECTIONS

• Body parts may be removed and often reconstructed

• Body parts may cease to function, start to function again, or
function in a different way
• Minds can become disoriented in crisscrossing between the
memories of the body “as-was” and bringing the newly assembled
body into psychological being and acceptance.
• Anger at one’s own body
LIVING WITH
 LIVING WITH…LOSS

• Gendered appearance
My old clothes don’t fit right. Now I make sure I
wear make up, and jewelry, and frilly scarves. I want
to look feminine. --WR
I went to the store yesterday and the clerk called me
“sir.” I held back my tears until I got to my car. Then I
sobbed and sobbed. 5 minutes I couldn’t stop. Today I
don’t want to leave my house. --CP
 LIVING WITH…LOSS

• Body image
My doctor told me breast
implants would help me feel I do not have a right breast. To pretend I
better about my body. He have a right breast so others will be
was wrong! These are not more comfortable with seeing me in the
ME--not the breasts that street isn’t important to me. -- AJ
nursed my children. These
are foreign objects inside of
me. They are frankenboobs!
--EV
I want my therapist to understand that I am so much more than
my boobs. My boobs aren’t what make me a woman. I also want
her to understand that I deeply miss them in ways that I never
even knew I loved them. I want my therapist to know that most
days I feel free as a bird being flat and then I have other days that I
want a pair of foobs [fake boobs] so that my old favorite shirt will
look the way it used to look. I want her to understand that while I
don’t regret my choice [to not have breast reconstruction] and
most of my days are filled with happiness and life, that I still have
moments of grief. I want my therapist to remember that I am a
human full of a range of emotions and contradictions and that I am
fine just the way I am. I just need someone to listen without
judging. --ES
 LIVING WITH…LOSS

• Sexual desire and intimacy

I would have loved some counseling around intimacy
after surgery…I was very comfortable with my
decision…but very unsure how to approach my
partner (and Tamoxifen side effects added even more
complexity to this issue!) --MM
I leave my shirt on when my husband and
I have sex. I won’t let him look at me fully
naked anymore. I’m afraid the scars will
turn him off. --JT
 LIVING WITH FEAR

My therapist suggested I make a

• Recurrence of breast cancer
video for my children to remember
• Losing time to live me. I want to, I really do. This is
something I can do for my children.
Life will never again be the same because I
Make it easier for them. But I
finally understand I am not immortal. -PG
haven’t done it yet. I keep putting it
off. It makes the end of my life too
real. --AA
EVERY time I have a cough that lasts a little
longer than it should. EVERY time I have medical
tests done. EVERY time my ‘cancerversary’
comes. I go through the fear all over again. --TP
 LIVING WITH THE POLITICAL

• Labels Oh, and ask what I prefer to be called. I know

• Survivor everyone has a preference. I hate being called a
• Warrior survivor or cancer free. I still not 5 years out and
had aggressive cancer. --CJ
• Thriver
• Pink marketing
• National Breast Cancer Awareness Month
• Susan G. Komen Foundation (and others) focus more on awareness
than research (17%)
• Less than 5% of all charitable money goes toward research for
metastases
 SUPPORT SYSTEMS

• Wanting/needing support while also wanting/needing

to be alone
• Family
• Sometimes we try to be strong for each other, but we all
need to recognize the fear, worry, and stress
• Friends and coworkers
• Medical personnel
I am deaf and live in rural country area. Doesn’t mean
I’m stupid. Means I am already a survivor before I had
breast cancer. Doctors assume I am not smart and
don’t deserve respect, informed decisions, and choices
about medical care. I asked lots of questions and got
little information back. Here in my town, I don’t have
support here for my anger. ---FA
 SUPPORT SYSTEMS
• “Sisters” in cancer
• Helps to find acceptance
• Provides hope and encouragement
NO ONE but another cancer patient
could possibly understand me and the
trauma I went through and the sadness
and shock I continue to feel. --AEG
I need to connect with
other women in the same
phase of treatment. I was
fortunate enough to meet a
wonderful woman who
spent hours telling me what
to expect. I couldn’t get that
from others. --SGP
 SUPPORT GROUP CAUTIONS

• Meetings can become depressing, boring, and

lifeless. Add fun activities and celebrations
• Having a better prognosis than others in the group
can make the woman feel guilty for being in a
better situation
 THINGS NOT TO SAY
(AKA “THEY MEAN WELL”)

• Well, at least…
• Everything happens for a reason.
• When my aunt had cancer…
• So how are the treatments going? How are you really?
• You should try…
 THINGS YOU CAN SAY

• I am so grateful to hear about how you’re

doing and just know that I’m on your team.
• That sounds so hard.
• You are a beautiful person.
• Nothing!
LIVING BEYOND
 CONTINUING SUPPORT SYSTEMS

We don’t get our normal life back. There is no such

thing as cancer free. My doctor says “NED” but I add
“AY”—”as yet.” The trauma is still there. There is still
discomfort and pain. What I need is help—physical,
emotional, and financial. Everyone helps when you are
in crisis but after awhile they expect you to be healed
and cancer free. I am terribly alone and lonely and
people call me a pity party if I say anything so I don’t
anymore. --SA
 LIFE CHANGES
This is a journey, not a destination. --CF
Everything changes.Your
relationships and how you view
things. It is never over. I think
everyone could benefit seeing
counselors. --LF
Confidence, gratefulness, fitness,
and fear can undulate between
periods of life so busy you don’t
even think or remember you
ever had cancer—over the years
of long term survival, and it’s ok
to need support and help again
at times. --KF
WHAT DO YOU WANT TO TELL THE
AUDIENCE?
 Lean in. Listen to us. --DM

Just listen to each woman to help her find her

voice and her choices. Ask about what her
choices mean to her, and what she would do if she
could follow her gut and not worry about other
people’s reactions. - BA
That I don’t want to be sedated. I sought out counseling
because this is a difficult journey. Immediately they wanted
to put me on a mood stabilizer. I refused. I wanted to be
present and to learn from my journey. I needed
counseling…not drugs. --LS
 I want them to listen, and not see us as statistics, or
assume we are typical anything. “She has cancer, she must
be upset,” or “she’s not crying, something is wrong”.
These are both wrong. Also, it would be super if it were
easier for cancer patients to get therapy. --GP
THE HUMAN SOUL DOESN’T WANT TO
BE ADVISED OR FIXED OR SAVED. IT
SIMPLY WANTS TO BE WITNESSED—TO
BE SEEN, HEARD AND COMPANIONED
EXACTLY AS IT IS.
- - PA R K E R PA LM E R
REFERENCES
Berman, B. A., Jo, A., Cumberland, W. G., Booth, H., Britt, J., Stern, C., Zazove, P., Kaufman, G., Robins Sadler, G., &
Bastani, R. (2013). Breast cancer knowledge and practices among D/deaf women. Disability and Health Journal, 6, 303-
316.

Berman, B. A., Jo, A. M. Cumberland, W. G. Booth, H., Wolfson A. A. Stern, C., Zazove P., Kaufman, G., Robins Sadler G., &
Bastani R. (2017). D/deaf breast cancer survivors: Their experiences and knowledge. Journal of Health Care for the Poor
and Underserved, 28, 1165-1190.

Bowler, K. (2018). Everything happens for a reason and other lies I’ve loved. New York: Random House.

Dana-Farber Cancer Institute (dana-farber.org)

Faix-Wilkinson, K. (2009). Deaf women with breast cancer: The meaning of social support (dissertation)

Hickey, S., Merz, E. L., Malcarne, V. L., Gunsauls, D. C., Huang, J., & Robins Sadler, G. (2013). Breast cancer education for
the Deaf Community in American Sign Language. Oncology Nursing Forum, 40, E86-88.

Sadler, G. R., Gunsauls, D. C. Huang, J., Padden, C., Elion, L., Galey, T., Brauer, B. Ko, CM. (2001). Bringing breast cancer
education to deaf women. Journal of Cancer Education, 16(4), 225-228.
Singleton, B. M. (2003). Deaf Survivors: Breast cancer stories from all over the United States.

Williams, F., & Jeanetta, S. C. (2015). Lived experiences of breast cancer survivors after diagnosis,
treatment and beyond: Qualitative study. Health Expectations, 19 631-642.

RESOURCES

https://medschool.ucsd.edu/research/moores/about/outreach/ASL/Pages/default.aspx